God be with you, as you make this difficult decision. Do not fear or think it as the end. If can give you comfort, maybe it is time.
Prayers with this decision.
Wanda Amorose

Sent by Wanda Amorose | 8:35 AM ET | 07-15-2008

Dear Leroy,

Hospice care IS more than getting ready for the end, so much more. It IS more effective means of dealing with pain. It IS support and assistance for Laurie and you. It is hopefully giving you more quality of life and help in dealing with the changes that are occurring. Hospice sounds like the help you are seeking. Having seen them in action, I would not hesitate to contact them again. Sooner than later.

To NancyGM, you ARE NOT ALONE in this community, we are here helping and supporting each other.

Sent by Sue Chap | 8:39 AM ET | 07-15-2008

Leroy and Laurie,
No matter what your decision, you must realize, as someone earlier once said, you have cultivated a very beautiful garden. The flowers that are growing here are a testament to the time and energy you have contributed to making this place a haven for many of us. These seeds are eternal, they will blossom and grow forever, much stronger and more beautiful with each passing day. When you look back at what you have accomplished, do it with a smile on your face and know that you have touched the lives of many. We are with you, we are your family and your friend and no matter what your decision, we support you. Continued prayers are with you all.

Sent by Laurie Hirth | 8:39 AM ET | 07-15-2008

Leroy

My vote is that you start hospice care. You never know, you may have a pleasant surprise if they can manage your pain. You can later stop the hospice care if you so choose. You and Laurie both may find it to be a very positive experience.

I pray for peace for you and Laurie.

Pam

Sent by Pam | 8:40 AM ET | 07-15-2008

Leroy - I volunteered for five years in a two-bed hospice home. My experience is that hospice care can relieve some of the stress of daily care and allow for more quality of time with family and friends. It doesn't rush 'the end', it does put a focus on pain management, and you meet some of the most caring people in the world. From your blog, it has sounded these past few weeks like you are already on the hospice path, listen to your heart and do what feels right. We will all continue to support you and Laurie in whatever decision you make.

Sent by Judy in Victor, NY | 8:41 AM ET | 07-15-2008

A big decision. I hope you know Hospice has worked with folks for much longer than anticipated and even left them if they improved.

Pain control and another option for information sounds like a good option.

I do have some problems with oncologist turning people over to Hospice. I can't imagine how difficult it is to work with so many dying folks but I feel they need to see the end. You and Laurie will know when it is right but I think it will be a great help to you both. Peace

Sent by Dona | 8:42 AM ET | 07-15-2008

Leroy, You'll have the number of days you'll have with or without contacting hospice. What hospice does is help you live those days absolutely as well as possible, without putting so much pressure on your loved ones.

From everything you've said about what's happened lately--especially that your treatment is now purely paliative, you and Laurie would benefit from hospice's assistance. I can understand why you don't want to be where you are, but not contacting hospice isn't going to put you elsewhere, it's just ignoring a great resource. Which is what many people do, until when they finally do let hospice help, there's not much time left at all.

And from everythoing I understand about hospice, they can be present for you in varying degrees depending on your wishes. Talk to them. Just talk to them.

Sent by N.R. | 8:42 AM ET | 07-15-2008

if having hospice with you and laurie will make things even a little more comfortable then it is time.

Sent by sarah | 8:43 AM ET | 07-15-2008

It is a tough call and I'm sure that you will know when you are ready. I suppose hospice in Hawaii would be considered out of network.

Sent by Brian Bogardus | 8:44 AM ET | 07-15-2008

Hospice is not the end. Think of it as a warm blanket. Heck, you could even get kicked out!!

Everyone I know calls it a blessing. The nurses are angels.

I was nervous about it myself. I read the book Dying Well and We Are There Heaven. It eased my mind. It will be the one of the best gifts to give to those who love you.

Sent by Janis | 8:45 AM ET | 07-15-2008

Hello Leroy,

What a personal and difficult decision.

I'm posting a link to a paper for your consideration. The paper is freely available on the internet.

http://www.nhpco.org/files/public/JPSM/march-2007-article.pdf

Many hospitals also offer palliative or comfort care programs if there are elements of hospice that aren't acceptable to you. Regardless, entering into any of these levels of management is not a one way street.

This is my first post but I've followed your blog since its inception and promote it where I can. I think you're an excellent teacher.

My best,

Jon Newman

Sent by Jon Newman | 8:45 AM ET | 07-15-2008

Dear Leroy,
Just follow your heart and all of us will continue to follow your lead. Laurie wants you back... will better pain management give you back more of your days and nights? I think so. We are sending thoughts of strength, little drink umbrellas, comfort, gowns that really close in the back, grace and giggles when a memory captures you for a brief tingly moment. Peace.

Sent by Stitches | 8:47 AM ET | 07-15-2008

Leroy, I read your post today and just cried. I've been following your blog since I found it when doing research about my sister's and niece's cancers. Leroy, there are so many hard things in life, and this is surely one of them. Getting ready to say goodbye to people you love is excruciating, so matter which side you are on. I so get her blog yesterday when she just wants things back as they were. Unfortunately, life isn't like that. Just wanted to let you know I had and have huge respect for you, even if from a distance.

Sent by Mary Oettinger Westra | 8:49 AM ET | 07-15-2008

Leroy, even just in the past couple of days, dozens of people have urged you to contact hospice. Many of these people were those who have been through what you are going through, others were professionals in the medical field. These posters care about you, and they know what they are talking about.

I suspect you think hospice is something rigid, like entering a one way street from which there is only one exit. Not necessarily so. They are flexible in every way.

And hospice is such an incredible comfort to caregivers. For Laurie's sake, do it. Just do it.

Sent by Wendy | 8:49 AM ET | 07-15-2008

It must be one of the toughest decisions you've ever made Leroy. My heart goes out to you. Let us know if we can help.

Sent by Elizabeth in Brooklyn | 8:50 AM ET | 07-15-2008

A difficult decision for sure! The way I look at it is just because hospice is now actively involved in your day-to-day care, it does not mean that your death is imminent! Hospice is a way to get the kind of assistance you need, pain management, etc., plus would it enable you and Laurie, family and friends to spend quality time together without having to focus on all of the daily activities necessary for your care. I would encourage you to try it.

All of my rationale and pontificating above is easy for me to say but you are the one who is affected so do what's best for you and Laurie!!

Blessings and prayers for you and Laurie.

Sent by Al Cato | 8:50 AM ET | 07-15-2008

Dear Leroy,
Considering hospice is a big step, but you can always stop should you decide it's not what you wanted. I worked as a hospice nurse and saw several patients taken off service because they were doing so well that they did not continue to qualify. So the outcome is not always set, and no one has a crystal ball. I heard many say they wish they had begun hospice care sooner because it contributed to their quality of life, including the family.

I suggest you grit your teeth, give it a try, and then if you don't like it, say it wasn't for you. You are still in the driver's seat!

My thoughts are with you, as always.
Linda

Sent by Linda | 8:51 AM ET | 07-15-2008

Mr. Sievers,

If you were to engage them too early, would you really lose anything real? Engage them too late, and you've lost a lot of excellent assistance and support for you and especially for Laurie. Who you are and have been your entire life will not change if you accept help. You are so brave and so strong, we here your blog army friends all know it, your family and friends know it, and you know it too, so is there really anything to fear in taking this step?
Give the gift of graciously allowing people to help you. This is their calling, what they were born to do. I admire them so.

Sent by Nichole in FL | 8:51 AM ET | 07-15-2008

Dearest Leroy and Laurie,

If pain and daily tasks are proving more daunting by the day, perhaps you should talk to hospice again. I realize it is like flying a white flag but if it makes things easier perhaps you will have more energy to enjoy each other.

I don't know either.

We all love you.

Sent by Lori | 8:52 AM ET | 07-15-2008

Dear Friend:
Your calling in hospice has been on my mind recently. Having gotten to know more about the things they offer, let me say first that their protocol is now 6 months of service to the patient and family, and in some cases they can be authorized to offer one year of service. Each one of us should hold out the hope that we can be the next Art Buchwald, and defy any time frame that might be attached to seeking their support.
I understand, from being right there as my dear friend Dan and his wife wrestled with this question, how hard it is to acknowledge that, indeed, it might be time. However, I cannot even begin to enumerate the many benefits once they come and take over. Besides pain management, they offer massage, music and pet therapy, reike, plus all kinds of emotional support services, etc. For my friend Dan, what will always stand out is that he had been using an oxygen supply for many weeks as his lungs failed. He had to deal with very dry nostrils and the discomfort that came with it. Once hospice was called in, one of the first things they said was that the tank should have had a humdifier attached to it to improve his air quality and comfort. It made an immediate difference. Neither the doctor nor the oxygen supplier ever mentioned this as optional or necessary.
I wish it were possible for all of us to restructure our thought processes so that the idea of calling them in is not immediately associated with dying, but rather as an aid to feeling as well as humanly possible in the days and nights ahead.
As always, I send you and Laurie my love.

Sent by Harriet | 8:53 AM ET | 07-15-2008

Leroy, I could not tell you what to do if my life depended upon it. But, being a Hospice Volunteer here in the Adirondack Mountains, what I have learned is that it is a shame for people to WAIT until the very, very end to get Hospice. What is the point of the pain and suffering, if you can be more comfortable? If you get better, WHICH WE ARE ALL STILL PRAYING FOR, you can say, hey, I no longer need you, thanks so much! DON'T GIVE UP, but accept a modicum of less pain. You know that you are loved and prayed for. Much love to Laurie.

Jan

Sent by Janice Goldberg White | 8:53 AM ET | 07-15-2008

I really think you should do it Leroy - I work in a hospice, my husband was cared for by wonderful hospice Dr's and nurses - they are EXPERTS in pain and symptom control, I see the difference their care makes to the quality of people's lives every day, please give them a try. Love Lisa

Sent by Lisa Burt | 8:55 AM ET | 07-15-2008

Practically, my suggestion is yes, start hopsice.
Emotionally, I may be just as conflicted as you are.
Leroy and Laurie, Thanks for your candor and eloquence as the days become harder for both of you.
I've got an extended family member just diagnosed with advanced disease. Our family is going from zero to hospice in really just a matter of days. But through sharing your experiences, I've been able to make the transition of little easier and have been able to help others to do the same. Thanks.

Sent by Karen | 8:56 AM ET | 07-15-2008

Dear Leroy,
I have no words today just prayers.

Sent by sasha | 8:56 AM ET | 07-15-2008

Leroy, there is no decision really necessary. Let Hospice come. Allow yourselves the benefit of the care and support that they can provide both of you. If it isn't a good fit...it's not permanent. You can ask them to stop coming and go back to the way that you were previously managing. This is a mind game for many...."is it time? is it too early?" My advice is, don't wait until it's "too late", and waste the precious time and peace of mind and support and comfort that they could have provided to you and Laurie. I love you both. Nancy

Sent by Nancy K. Clark | 8:59 AM ET | 07-15-2008

Our thoughts are with you at this difficult time.

Sent by Marie in Minneapolis | 9:01 AM ET | 07-15-2008

Dear Leroy & Laurie,
I've stared my mortality in the face twice now, it's true, but I have no idea what it is like to be in your shoes. The only suggestion I have is to interview an agency or two. Asking questions is not committing to anything, and with all my heart I hope it might help you. Your hearts haven't mislead you yet. Go with them (and I'd keep tissues handy).

Sent by Judie in CT | 9:02 AM ET | 07-15-2008

It's funny, it's not the additional help that is the problem, it's the acknowlegement of what getting that help means. For my less than profound two cents worth, I would say that if you can give Laurie a break from the chores and more time to be with you, then hospice care would be helpful. Your time together is precious. And remember you only have to accept the care YOU want.

Sent by Robin L. Fairfax VA | 9:04 AM ET | 07-15-2008

Oh Leroy, The joy of Hospice is you can have them get involved in your care and, in time, decide to quit!! While they run under the auspices of having the folks under their care have a life expectancy of 6 months or less, they can continue to extend your care and their involvement for as long as you need them. They did a wonderful job for my Dad for the last 8 months of his life. We could not have kept him home without their very compassionate care. I truly believe the earlier you get involved with them, the better. You have time to establish relationships with your nurses, aides, chaplain and social worker while you have the ability to do so. As your life continues on it's inevitable journey, they will be a tremendous comfort for Laurie and the rest of your family and friends. They assist with all means of pain management, equipment you may need in your home now, or later.....and are available 24 hours a day. It seems like it is better to have them on and then opt out later if you wish, then to not have that support in place when you and Laurie really need it. Bless you both with these tough decisions and challenging times ahead of you. I had wanted to respond to Laurie's message yesterday, but found it difficult on the first anniversary of my Dad's passing. To all of this blog family who are struggling with loss, I wish you peace.....

Sent by Karen from Upstate NY | 9:04 AM ET | 07-15-2008

Dear Leroy,
It is a hard decision. If you need the help take it. I believe some people do get better under hospice care and go in and out of hospice. My experience with hospice was very positive for both the patient and life giver. May God bless you and Laurie. May you make the right decision for you.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 9:06 AM ET | 07-15-2008

Leroy and Laurie:

I have never heard anyone say "I went on hospice too early." The average term of a hospice patient is far less than the six months period that was arbitrarily adopted when hospice service was added to Medicare benefits. You can elect hospice services and then drop out and re-up down the line. No one in hospice takes offense at your ambivalence. Please feel free to take advantage of the support that is available through hospice. They offer support for the whole "family" including the lifegiver.

Ruth

Sent by Ruth Ratzlaff | 9:07 AM ET | 07-15-2008

Larry, This is a hard decision that only you can make. If you are not sure, perhaps that suggests that it isn't time yet. See how today goes and tomorrow. I think you will know when it is time. God Bless.

Sent by townie | 9:07 AM ET | 07-15-2008

That is hard. On one hand, hospice care might take care of a few things leaving you less to worry about. On the other hand, their very presence in your life could make you sadder than you would be just slugging it out and doing things your way till the end. I gess go with your heart, leroy. I dont think there's a right or wrong answer on this one.

Sent by jean | 9:08 AM ET | 07-15-2008

Leroy,

I would definitely encourage you to go with Hospice care. I know this is a difficult decision, but it doesn't mean you are giving up at all! It's one way to have some control over the whole process. You choose how much care you want or need. These people are truly awesome. Even if it's just a nurse popping in once a week, it would be worth it for both you and Laurie, because they really are there for the whole family. The important thing is, YOU are making the decisions. God bless,
Lisa

Sent by Lisa Y | 9:10 AM ET | 07-15-2008

I have had some wonderful experiences with hospice and it has always benefited those people around the sick person too. Hospice nurses have an incredible sense with everyone involved and it allows the loved ones to concentrate on just being with the patient.

Sent by Suzy | 9:12 AM ET | 07-15-2008

Dear Leroy and Laurie,

I have been a nurse since 1973 and have done my share of different kinds of nursing. The rewarding has been giving private duty and hospice care. Please don't be afraid. The best people I have ever met and taken care of have been the hospice patients and their families.

You and Laurie can still control the amount of care you need and feel
comfortable with. Just be open and honest as both are. Ask lots of questions. Everyone wants to help the both of you.

Now that my husband had radiation, chemo and surgery for esophageal cancer, we are on the receiving end of the care. I know it is a hard road. So far the CAT scans have been good but one never knows what the future will bring.

Thank you both for sharing on this blog. You do more good than you will ever know!

Keeping everyone in our thoughts and prayer daily

Sent by barbara j | 9:12 AM ET | 07-15-2008

I have spoken to many people who wish they had contacted hospice sooner and never anyone who has regretted the contact. The hospics organizations I have worked with have been wonderful.

Sent by Steve | 9:12 AM ET | 07-15-2008

Dear Leroy,

By creating this blog and community, you have opened up a vehicle for 2 way communication. I have asked myself a similar question about using the palliative care unit at my hospital. Maybe my approach will resonate with you and others facing a similar decision point. I decided to use them if I found them helpful after the first few visits. Their purpose, as most of us know, is not there to cure you or change the ultimate outcome. As you said, they are there to make you more comfortable and to manage the pain. Given this as the starting point, I began using them a few months ago. They have helped me. It's not important how since each of us are different. But, I found people who have been through this with 100s of other patients and the right individuals (i.e., those with whom you are compatible) will help you. So, if the question in your mind is not "if" I need them, but "when" do I need them, my suggestion is to give them a try now. If, after giving them a try they're not helpful, cut them loose. The emotional hurdle in bringing them in is huge, but in the end it won't change the final outcome. Look at them as another technique or mechanism to make the most of each day.

Wishing you the best,

Ed Steger
www.blogspot.hncancer.com

Sent by Ed Steger | 9:15 AM ET | 07-15-2008

I dont't think there is a right or wrong answer here. I can tell you from experience that the Hospice nurses are wonderful. But again, the choice is yours, and you shouldn't feel defeated if you choose Hospice. My thoughts are with you.

Sent by Kathleen, NJ | 9:19 AM ET | 07-15-2008

Leroy,
As a nurse, a caregiver to many of my elderly and sick family members and a real time "life giver" to my spouse, I recommend signing up for Hopsice care highly. I know that there is a real knee-jerk reaction (fear) that I think we all share when admitting that it may be time to begin Hospice care. We don't want to do it!
I can only say that my experience with Hospice has been that we usually waited too long and began it too late, because of that "Hospice Care FEAR".
I feel that we share a universal fear, at least here in our culture, when we attempt to admit to ourselves or to our loved ones, that we need changes in our attitude about our life and it's direction. I gasp even typing these words to you.
With that said- Each Hospice program is a bit different, but the philosophy is the same. They are there to help make your days the best that they can be. That makes it worth the jump. Remember that you can always stop it if you don't like their style or the care that you are receiving from them.
I don't think that you'll regret the step. Remember that Art Buckwald was on Hospice care for YEARS! Quality of life is very important. We all deserve quality and dignity- that's what Hospice can give you.
Thoughts and prayers to you today.

Sent by Deb | 9:21 AM ET | 07-15-2008

Dear Leroy,
Nothing wrong with making yourself as pain free and comfortable as you can. That is what they are there for. Still, the whole idea of hospice does make you feel as if "the end" is near. That is just part of the stigma, tho, not always the reality.

You and Laurie are in my thoughts and prayers daily.

Lianne

Sent by Lianne Friedman | 9:23 AM ET | 07-15-2008

Here's a thought. Just give them a call and say you just want to meet with them. It doesn't mean you have to admit yourself yet. Baby steps Leroy. After you meet with them and hear what they have to offer, you will know when the time is right.

I will pray about it for you. God knows what direction you should take.

When we met with the hospice folks for our son it was made clear to them that in no way was Theodore ready to admit his time was growing near. They were just there to make living more bearable for him. After awhile he was ok with them being there, he had the pain pump, the hospital bed which made it easier for him to manuever (plus he was in control of the remote for the bed :)

Was it hard? Yes. Was it scary? You bet. Did we do it? Yep. His doctor recommended it actually so that took the decision out our of hands somewhat so that helped. Maybe ask your doctor his thoughts. A second opinion never hurts.

Try to enjoy the day Leroy and Laurie. Try to find peace. Sit and hold hands. Listen to music. Rest. God will take care of the rest. He will show you the way.

God bless you both.

Judy

Sent by Judy Voller | 9:23 AM ET | 07-15-2008

Whether or not you sign up for hospice care has no bearing on the outcome of your battle and it is certainly not an admission of imminent doom..\ It just means that someone comes by and checks up on you occasionally. And that may quite well have a significant effect on how well you and your caregiver live. From my own experience I can highly recommend it. Michael K.

Sent by Michael K. | 9:25 AM ET | 07-15-2008

Before I entered the world of cancer I saw hospice as almost surrendering (and I know that plays on the fight analogy you do not like.)
However after having to deal with other cancer friends making that decision, and meeting with hospice staff, I now can see that I was wrong.
In many ways it is the last act of a fighter. You are choosing where you are going to stand your ground, and the you are being active in making the most of the time you have left. You are still not going quietly into the night.
So when is the right time?
The questions about our treatment are so easy to answer. Yes I want chemo, no radiation, no more drugs. But the questions that touch the lives of those around us are the hardest to answer. We sometimes have to be selfish. Maybe hospice will be the best for us, but will make our loved ones feel like we don't have faith in the them, or that we are trying to push them away. It is a very tough decision.
I hope you can find the guidance you need to make that decision Leroy.

Sent by Brit | 9:26 AM ET | 07-15-2008

Remember that a hospice decision is reversible. If some new treatment opportunity comes along, you're not limited from exploring it or leaving hospice to take advantage of it.

Many families who have used hospice say their only regret was that they didn't begin earlier.

Hospice took a huge burden off me and my sisters when Mom was dying -- just knowing someone was there to help make decisions, even in the middle of the night.

And they can do much more than just pain management.

I think with hospice care too late is much more likely than too early.

Love to you and Laurie,

Kate

Sent by Kate Murphy | 9:28 AM ET | 07-15-2008

Bless you both. You're in God's hand now...he'll show you the way

Sent by LynnAnn | 9:30 AM ET | 07-15-2008

Leroy go with what is in your heart. You will always make the right decision.

Sent by Pat Z. | 9:30 AM ET | 07-15-2008

I imagine it's a huge step, Leroy. How about having them drop in so you can talk with them about what specific kinds of things they could be providing--and then you can decide?

In Louisville there's a Hospice commercial on TV showing a guy fly fishing who's supposedly under Hospice care. I'm alittle mystified by that myself but the gist of the spot is that Hospice's mission has changed and their involvement no longer signals imminent death. Just a thought amongst my many thoughts about you each day.
Love,
Anita

Sent by Anita Solomon | 9:34 AM ET | 07-15-2008

My mom died from cancer of the gall bladder 22 years ago. Her wish was to die at home in her own bed. With the help of one of the first pioneering hospice programs she was able to do so. Listen to your body. Listen to Laurie's face and body as she helps you. The hospice nurses will be a support to her as well as you. You'll know when it's time.

Sent by Linda | 9:37 AM ET | 07-15-2008

Talk with them. I am sure they will be able to help in all sorts of ways.

Sent by Carolyn | 9:38 AM ET | 07-15-2008

don't look at hispice care as the end, rather it will make life much easier for you and yours. no one knows when you will die. i think that is the burning question....no one knows..you re reckening when you will die. but why must you be in pain and discomfort? you can still hope for a mircle...as least i will pray for a mircile for you..there is always hope as long as you draw breath. you willhave another person with you during this time. another source of support... and you will be much more comfortable. you are not giving up....remember that!

Sent by ileana suber | 9:39 AM ET | 07-15-2008

Go for it, Leroy. My friend, Julia, "failed" hospice. So did my beautiful sister-in-law, Debbi. It was definitely time for hospice, they felt. Like you, they were looking for a comfortable way to remain with us for as long as possible. The pain wasn't managed well by us, as hard as we tried and as well-meaning as we were. Hospice, we were told, was designed for the last six months of life. They treat everyone in the room... family and friends. Well, lo and behold, both Julia and Debbi were made so comfortable that they outlived the hospice "deadline," pardon the pun. They both loved telling others how they "failed" hospice. Julia lived another year. Debbi was with us for nearly eight months. There is a lot to be said for being comfortable. Neither died in pain. Both were fully present until their last hours. It is what I would wish for any one I cared about.

Sent by Holly Anderson | 9:40 AM ET | 07-15-2008

Hi Leroy,
I am moved to respond to your throughts about hospice. You are putting into eloquent words what so many people contemplate as they make this decision.

Hospice is an organization blessed with an incredible group of human beings who, I believe, help people live to their fullest as they move through the last phases of life in this realm. They build a team of people with you who will walk this process with you, to meet you and your family's unique needs. They work hard not to be intrusive, and they will become dear to you and visa versa. I've worked with Hospice nurses and social workers through most of my nursing career, and during the illnesses of my own family members. It is helpful to them and to you and your family, ultimately, to meet them earlier rather than later..............for issues of symptom management as well as developing relationships with each other early-on.

It is a HUGE decision, I agree. I believe that you will be pleased when you do make that decision........when you are ready.

Thank you so much, Leroy, for continuing to share what is on your mind and in your heart.

Terry Gremel(RN, MSN)

Sent by Terry Gremel | 9:40 AM ET | 07-15-2008

Leroy - calling Hospice does not mean the end is near!!! It is a big step that I agree with. A major step - but not the end. They have access to many things that can help you and help Laurie also. They helped my husband out so much but they also helped me out so much. Call them - they are there to help both of you.

Sent by Deb from Michigan | 9:41 AM ET | 07-15-2008

I think we waited too long to get Hospice involved with Mom. We felt that if we admitted we were at that point, it was almost like an invitation for the inevitable to come sooner. Of course that is not the case (it could even work out to be the opposite); but it is difficult as a society to look upon such circumstances without emotions getting in the way. As a result, I think Mom endured more pain than she should have prior to their arrival. That bothers me still... The great thing about Hospice is that when you need "space" (for them NOT to be there) they get the hint and give you that window. Of course when you DO need them there -- to help with medical issues, hygiene and meds, they are right by your side. I think you will know in your gut when it's time. Remember, even if you do go ahead and put Hospice in motion, you call the shots...you are not giving up that control. I think if we would have realized that at the get-go, things would have been easier for all of us. God bless you both.

Sent by Karen Laven | 9:43 AM ET | 07-15-2008

Dear Leroy,

I'm sorry that you are struggling with this. The time for our family to make this decision with my mother is coming soon, also. From my understanding, the hospice folks are good at helping people make these kinds of decisions. In most cases, they can provide levels of care - you can start with in-home care and then move to on-site care later if you decide to do that. There's no harm in talking to them. Getting their expertise might ease your mind as you work through this difficult decision.

Best wishes with the pain management. I recommend you seek out and embrace whatever pain mitigating options are provided to you. You can do this incrementally, but you should consider doing so soon. Here's how you know you are ready for more help with the pain: when you find yourself saying things like, "more pain management would be welcome right now." Your pain is hard for your family and friends too; no one wants you to be in pain. Comfort and peace to you and yours.

Sent by Randy | 9:45 AM ET | 07-15-2008

Leroy,
Big decisions -- and maybe not so big. Hospice can give both you and Laurie some valuable support, services and relief. Being in their care does not hasten an end....often it adds more time of quality and comfort. (Remember Art Buckwald in hospice!!!!)
Thank you deeply for your candor and availablity through out this difficult journey. You are helping and connecting more people than you will ever know. May you feel the blessings and prayers that are being sent to you both.

Sent by Sandi in PHX | 9:46 AM ET | 07-15-2008

Hospice Care is more than getting ready for the end. It is about Living comfortably and compassionately. It seems like a difficult decision now, but it is one that you'll be forever greatful for once you are in their care.

When the time is necessary for hospice in my husband's care, I will not hesitate one second. We have been married 32 years and I love him tremendously. I don't know if that gives some insight to understand that I would do whatever is in my husband's best interest.

Sent by Margaret Fowler | 9:46 AM ET | 07-15-2008

Hi Leroy and Laurie,

Just checking on you both this morning. Again, our hearts and spirits ache for you both, and the decisions you are facing. Wishing we could send you something that would lift your spirits and make you both smile, and feel some peace and happiness for awhile. The offer of a visit from any of our dogs still stands, but, hopefully you already have friends with dogs to hang out with and pet, if that would be helpful.

Hospice? Ready? If comfort and pain management would be helpful, why not just go for it, and then, if you aren't comfortable with "hospice," you can always "fire" them! :-) Maybe even trying it for a week, and see??? I'm just throwing out ideas that are in my thoughts....I know you mentioned it's a big step...signaling "getting ready for the end"... and maybe it is, but maybe it's also a step towards getting some pain relief, lots of people outlive hospice.....but also, lots of people don't....so yes, it's hugely sobering. So, how can you not be thinking these thoughts right now? Every day, there are probably lots of "little deaths" that you both are coping with .... physical abilities, griefs, changes in how things are from how they used to be..... Well, I will stop. But both of you are in our prayers, our hearts, and our spirits.

Wishing you both comfort and peace.

Heartlight,

Virgie & Kim

Sent by Virgie & Kim | 9:48 AM ET | 07-15-2008

One of the best things about hospice is that they let you maintain control of what's happening, so I'd recommend contacting them now to get things rolling -- very definitely for pain relief, if nothing else.

Love to you both...

Sent by Brenda | 9:49 AM ET | 07-15-2008

Leroy & Laurie,
Going it alone now is akin to landing a 747 without the flight crew (sans computers, too!).....most probably hitting the runway, cartwheeling ass over teakettle, flaming pieces flying off....as compared with taking on the Hospice team, caring professionals who will do all they can to adjust your flight path, gliding in for a soft & uneventful landing.....As Woody said, "That's not flying, that's falling with style!".....as opposed to just falling....go in peace, my friend....

Sent by Tom | 9:50 AM ET | 07-15-2008

Hi Leroy,
Along with being a Stage lV cancer patient, I'm also a hospice volunteer. I wanted to find out what this hospice thing is all about while I was still in remission and well enough to be of service to my patients.
My first patient spent a pleasant year in hospice care. Her family decided for her (she had Alzheimers so couldn't decide for herself)that it was time for extra help. My second patient waited way too long; she died the day after she entered hospice care. She suffered unnecessary pain and discomfort but I respect her choice as it was hers to make.
Whenever you decide to relax and let hospice take care of your needs, including pain management, is the right time for you. You may just hate having "strangers" around you. You may wish you'd called in hospice sooner.
I do know for cetain that Laurie could use an extra hand and a sympathetic ear, as caregiving is so totally stressful even when done out of love.
Now that I'm out of remission, I am calm and reassured that I know the hospice women and men who will be caring for me when my time comes. For the past year I've helped over 40 patients and it's been probably the most important work I've done in my life.
Hospice is not giving up and it is not accepting your fate. It's just another part of your journey. One of my "favorite" patients has been in and out of hospice care for the past 15 years! He has an unusual disease but he keeps rallying. This is most unusual but not unheard of.
You are not alone in your journey. We are all with you as you navigate the unchartered and scary waters of Cancerland.
Sue

Sent by Sue Mersic | 9:51 AM ET | 07-15-2008

Leroy --

How to handle this emotionally? Maybe you both could sit down with hospice staff for an informational interview and then make your decision when you are ready and have had time to digest what they had to say. It does seem like a big boundary to cross but there seems to be flexibility. My father is on his second round of hospice care. My uncle also graduated from hospice care and then returned later. If my cancer ever returns and I need it, I'd sign on for hospice care in a nanosecond.

Sent by Leslie Bjorncrantz | 9:51 AM ET | 07-15-2008

Leroy, hospice care doesn't mean that you are at the end. Many patients continue to receive other treatment while under the care of hospice doctors and nurses. And while it sounds like you have enormously supportive doctors now, using hospice will give you an entirely different set of caring people that are focused directly on your comfort. Using hospice does not by any means signify that you are losing hope or stopping your fight. It's just a different phase. I hope that you seriously consider this. Hospice workers are amazing and loving and will change your life. Another way to look at it is that hospice will also provide much needed support for Laurie as well. God bless and I know that whatever decision that you make will be the right one.

Sent by Chris | 9:51 AM ET | 07-15-2008

Leroy and Laura, your courage is inspiring and thought provoking. My thoughts are with you

Sent by Michael Roden | 9:52 AM ET | 07-15-2008

Leroy,
I think you're struggling with what hospice can represent, not what it offers, which is what you and Laurie really need right about now.

Today is the 22nd anniversary of my brother's death. He was diagnosed with metastatic lung cancer which we think might have been related to exposure to Agent Orange (he was a Vietnam vet) I can still remember visiting with him on a Saturday morning. I had driven down to New Milford in the Northwestern corner of Connecticut, where he and his family (which included 2 daughters, ages 5 and 7) lived. This woman, a hospice nurse, showed up to make sure that he was ok. Neatly but casually dressed in a t shirt and shorts, she was on a first name basis with my sister in law as well as my brother. He had been having difficulty with mouth sores, and I remember her bringing swabs and some other things to help him keep comfortable. I can remember that sense of compassion and caring, kind of casually framed given the circumstances (they had a hospital bed in the living room so he could be in the middle of family activities) The bottom line was that hospice provided relief and support to my brother as well as his wife (and ultimately for the kids) so they could carry on until it was time for him to go. As I reflect upon the possibility of recurrence myself, I think I would go for whatever I could get, in terms of comfort for not only me but for my family as well.

Just some thoughts and as always, we remain with you in spirit.

Sent by betsey in albany ny | 9:53 AM ET | 07-15-2008

You know, hospice doesn't actually REQUIRE you to die within six months. It's just there to help you cope with the challenges of living with a serious illness.

Seriously, as I have read your entries over the past several weeks, it seems that hospice can really help with most of the issues you're facing.

It comes with serious emotional baggage, believe me, I know. But it really will make your life better.

Sent by pam | 9:54 AM ET | 07-15-2008

Accepting hospice in now way means that you're "done" - on the contrary, its a better way of managing your care. Hospice has evolved over the years, and you might be surprised at all they can do. My mother and father-in-law were with hospice for 18 months, during his illness, and they were wonderful.

Please consider consider just having a conversation with them to find out more. I think you will be pleasantly surprised.

Sent by Lesa in Kansas | 9:54 AM ET | 07-15-2008

Is there any way you could do a trial period? Test it out and see if it fits. Make sure they have WiFi there. If not, no deal.

Sent by jen barad | 9:57 AM ET | 07-15-2008

It's not that big of a step, and you can always step back out if it isn't right for you! The wonderful thing about hospice, I've found, is that the nurses are not only the pain relief experts, they also can free up both Laurie and you to optimize daily life. I hope you try it. Wishing you a wonderful day, Leroy.

Sent by Evie in Colorado | 9:57 AM ET | 07-15-2008

Try not to fear it Leroy. I'm a nurse who's had patient's come off of hospice after they improved so much. In the mean time, the hospice care they received was so helful and comforting. They're just is not to remind you of death but to enjoy the life you have.

Sent by melissa | 9:58 AM ET | 07-15-2008

Leroy and Laurie,

I'm sure I'm not the only follower out here who has been praying for the past week or so that you would be ready to take advantage of the wonderful services that hospice has to offer. I guess you could look at it as giving in, "getting ready for the end" - as you put it - but you could also look at it as continuing the fight, as employing all of the resources out there to ease your pain - physical and mental. Make the phone call. Talk with the experts. A conversation, a meeting...what is happening in your body right now may be out of your control or that of your physicians...but you do have control over a lot of things...including the choice to seek support and solace for you and Laurie.

Sent by Susan | 10:00 AM ET | 07-15-2008

Thank you Leroy for sharing with us "your version" of this very personal journey that awaits each of us. Thank you for taking away the opacity of this experience. With this blog, I hope you are encouraged by knowing that you are not alone. It is not just your family that is with you, it is this community that has come together through your blog. Everyday I read your blog, it is like I am visiting with you. Keep on writing. We are with you.

Sent by Lois W | 10:00 AM ET | 07-15-2008

Hospice and palliative care are wonderful things. It is about pain management and about you as "team" leader.

It saddens me the negative connotation that hospice care has. It isn't about giving in or giving up. It is about continuation of life without unnecessary medical intervention.

I commend you Leroy on opening this discussion. It is hard to choose what course to take.

As a healthcare provider it saddens me when families do not realize that "do everything" can mean pain, tubes, and alienation.

Sent by Lauren | 10:03 AM ET | 07-15-2008

Leroy and Laurie,
I don't have all the answers. Comfort is the key to living your life and making the most of your moments. I say go with comfortable days and nights. Hospice are great people. I have been with you since I started chemo in July 06, and i want to thank you for letting us into your world, it has helped so many people navigate and share. Love you and pray for you. from Sherri in Texas.

Sent by Sherri Eggleston | 10:06 AM ET | 07-15-2008

Hi Leroy, I know that you are a fighter and maybe you think giving the nod to Hospice will be like a surrender. However, they really know their stuff and can make life a bit easier for you and Laurie. As so many have said so well before me, they are a wonderful organization. You might even find they are worth writing about. If you discover you really don't need them you can always de-admit yourself from their program. But I think they have a lot to offer you.

Sent by Alycia Keating | 10:09 AM ET | 07-15-2008

Leroy,

Only you know the answer to that question.

But here's my two-cents worth. After reading Laurie's blog yesterday and your entries over the past month, I would say, yes, it is time.

I feel what might make the decision more palitable for you is to take a look at the way you look at hospice. Your experience with it several months ago did not impress me as overwhelmingly positive. But there could have been a myriad of reasons for that. My experience with it with my mom was very positive and I walked away when all was said and done wondering why we didn't do it sooner. Actually oodles of people walk away saying or thinking just that.

Hospice is not caving in, giving up or anything along that line. Rather, it is freeing. Those around you, like Laurie, will be given the break they need. From my experience it was a win-win situation.

But I am not you, and as a caregiver, I was not on your end of the decision.

Just remember, whatever you choose, today it is your choice. You will be excerising control.

Love ya, Leroy!

Sent by Teri Thomas | 10:09 AM ET | 07-15-2008

Leroy, we brought in Hospice 3 weeks ago for my husband as he is facing the end of a nearly 4 year battle with glioblastoma. The Hospice nurses are fantastic, and the services they can offer are incredibly helpful. They give advise, and can speak from experience about what to expect. It was a hard decision to call them, because as you said, it really signals the end. But we called them 9 months ago and then got a reprieve of 8 months when a chemo worked for a while. But we have decided to keep Paul in the house to the end if that is possible, and Hospice is very willing to help see that that happens. Call them...you'll be pleasantly surprised

Sent by Pat Syvertsen | 10:09 AM ET | 07-15-2008

Wishing many blessings on you and Laurie as you make this important decision. There's some good expertise on this board, and it will be helpful to many of us.

Sent by Linda Lee | 10:15 AM ET | 07-15-2008

Good morning Leroy,

I don't know how to advise you on this topic, but I am sending you and Laurie major hugs, strength and the hope for a few cancer free laughs between you two today. with lots of love, liz

Sent by LIZ | 10:18 AM ET | 07-15-2008

Thank you for taking the time and energy to lead us onward in this difficult journey. Hospice can wrap you and yours round with another layer of comfort to deal with both the physical and mental pain now. I know of others who did not want to invite hospice care in because of the sense of finality to life on earth that this implies, and I think they suffered more deeply because of it. I also know of some people who have been in hospice for many months - that moment of one's final breath is still a mystery.

Constance Ore,
Cancer of the bone marrow.

Sent by Constance Ore | 10:18 AM ET | 07-15-2008

Hi Leroy,
First let me say I do not know your perspective beyond what I have read. I became a Hospice volunteer in 2005. In 2006, my husband and I, brought my father in-law into our home because he was dying from cancer. I was given a new angle of Hospice care and wonderful opportunity to be with someone on the last leg of their journey. From every angle I have worked or witnessed so far, I all too often realize that I wish Hospice had had present sooner. The care and support they provide for you and loved ones, can not be measured in words. It is your decision. Sometimes people wait so long that their family has to decide for them. Too many times Hospice is invited into the home, only to have the patient die within a few days because the decision was made very late in the dying process. By making the decision to have Hospice everyone (especially you), must except this final leap of faith. But I am absolutely positive that once you make that decision, you will wonder why you didn't make it sooner. Good luck and God Bless, and remember that when you are ready there are wonderful and loving people just waiting to make this process as comfortable, peaceful, and yes actually, hopeful for you! Good luck on your journey.

Sent by Attie | 10:18 AM ET | 07-15-2008

Here are the questions. Are you ready to have more comfort and pain management. Are you ready for Laurie to have a little help in making you comfortable? Hospice will not increase or decrease whatever time you have left.

I suspect your real question is does bringing hospice in force me to face death, to deal with it here and now

Sent by judy | 10:19 AM ET | 07-15-2008

Everyone I know that used hospice only regretted not using it sooner--and some of them even graduated out still living and breathing!!!

Sent by Jane | 10:22 AM ET | 07-15-2008

The word "hospice" can fill us with dread because of the implications, but as others have said above, there is no time limit and the care and pain management is wonderful. Perhaps you and Laurie could try it for a while and see how you feel. We all want you to be as comfortable as possible and we want you here with us. We love you and will do anything we can for you and Laurie.

Sent by Tina from Alton IL | 10:23 AM ET | 07-15-2008

Good luck with your decision, Leroy. I want to reiterate that you're not 'stuck' in hospice if you find it's not right for you.

Pat's end came so quickly that he was in hospice for only a day--it ended up being more of an insurance issue--so I don't have a much of an opinion.

Continued prayers for you and Laurie.

Sent by Kathy B. from Michigan | 10:23 AM ET | 07-15-2008

My experience with hospice was short but good. They know what to do and when and how. They will make your life much easier and Laurie's life much more focused on being with you rather than occupied about the how's, why's, and when. Do it. Take that step.
How hospice workers described it to me was that they are always called in too late to really make a difference to the family. Let them do their thing, so that you can continue to live in comfort. My prayers are with you.

Sent by Carol Harrnacker | 10:23 AM ET | 07-15-2008

Hospice does not mean your life is over and is one way to help yourself and even your family and friends. Meet with the hospice folks and find out what is available to help you. It was such a relief for me when hospice got involved in the care of my mother. When my mother fell and broke her pelvis, she chose to leave the hospice program in order to get physical therapy. She did not rejoin the program before she died two months later, but for the short time my mother participated in hospice,it was a godsend. Everyone's life experience is different. Only you will know what is right for you. Blessings.

Sent by Jill Kipper | 10:25 AM ET | 07-15-2008

I have no words.......a warm gentle hug to you both.

Carrie
cbelair.wordpress.com

Sent by carrie Belair | 10:25 AM ET | 07-15-2008

Leroy, All of my experiences with Hospice with family members and friends has been a celebration of LIFE. No one on this earth knows how many days we have left, but we should strive to make each day count and if pain control and support help you LIVE each day...

I wish you peace.

Robin

Sent by Robin Solomon | 10:26 AM ET | 07-15-2008

Leroy and Laurie,
I don't think it is ever too soon to be on Hospice. Their wealth of not only information, but ideas and emotional support are priceless. Let me steal their motto from a few years ago,"Hospice--It's about how you live."

Peace and grace on your journey............
Heather

Sent by Heather | 10:27 AM ET | 07-15-2008

Does bringing in Hospice mean the beginning of the end? If there is less pain and discomfort does that mean the fight it over? The emotional decision to bring in yet even more people to your fold is huge, I get that. So tiring to have to make more decisions, it's incredibly unfair.
Whatever you decide, we're all behind you.

Laurie: I don't think my note to you made it through yesterday: I've been thinking of you. Wish I could share my box of tissues with you, it's a big one.

Sending you both love and support,
Debra Altschiller

Sent by Debra in New Hampshire | 10:29 AM ET | 07-15-2008

I cannot recommend hospice highly enough, particularly for the caregiver. The last months of my grandfather's life were perhaps the most difficult for my grandmother who, determined to keep him at home as he wished, attempted to care for him herself. Hospice came to the rescue, bringing mobility aids and sufficient pain meds to enable my grandfather to be bathed, dressed, and at home without severe pain (or severe injury to my grandmother's back!). It also enabled my grandfather to spend his final night next to my grandmother, in a hospital bed that adjusted to be at the same height as their own and allowed hands to touch all night long. When my grandfather passed away my grandmother knew that she had provided him the peace of ending his life at home, in their bedroom, on their sheets and with

Sent by anna | 10:32 AM ET | 07-15-2008

I'm sure you've noticed that every single remark about hospice has been positive. And you know it's not like it's a binding contract! The hardest part of this decision is most liklely admitting to your self that you have reached this place of decision making regarding hospice. It was probably easier for you to decide to have brain surgery and spine replacement-and those were certainly "contract binding" procedures! Warm fuzzy hugs to you two.

Sent by Susan | 10:37 AM ET | 07-15-2008

Dear Leroy,

I know how big of a step this feels to be. For the rest of my life I will be able to vividly recall the conversation in my parent's driveway with the home health nurse about calling in hospice for my Mom. Honestly, if dissolving at that moment would have been an option, I would have taken it. Thankfully we got through the decision making part of the process. What came next was difficult, but I am so very thankful that my mom's life was in the hands of the hospice team. Please know you are in my thoughts and prayers.

Sent by Holly | 10:43 AM ET | 07-15-2008

Leroy,

The poet Rainer Maria Rilke tell us to "Live the questions now..."

You pose the question, "Hospice Care. Is it time?" What you do know is that you'd welcome pain management. Pain is often frustrating, time consuming and challenging. Relief from pain may allow you to "...gradually, without even noticing it, live your way into the answer...."

Godspeed.

Celia Bandman

Sent by Celia Bandman | 10:44 AM ET | 07-15-2008

Like Evie, I can only encourage you to give hospice a try, take a small step and test it out. They'll take their lead from you and Laurie and your needs.

My mom and our entire family had a wonderful experience with at home hospice care. They were flexible and sensitive in dealing with our changing needs. Sometimes simply discussing meds with my dad while mom slept, or chatting with my mom while dad went grocery shopping. Their patience, energy, confidence--even a great sense of humor--was inspiring. They not only helped us all get through the toughest days, they were warmly welcomed visitors on the good days.

Wishing you many good days!

Sent by Kellie in Switzerland | 10:44 AM ET | 07-15-2008

Hello Leroy,
Look at it from this perspective. The more physically comfortable you are, the better quality of time you'll have to spend with Laurie, family and friends. You've endured so much pain, Leroy. Why not let the angels of hospice help you and Laurie. I don't believe you'd regret it.

Sent by Sharon | 10:50 AM ET | 07-15-2008

Dear Leroy and Laurie,

Hospice IS able to improve your pain management issues. They are able to assist Laurie and you in modifications to improve your quality of life. Do not view them as a end, view them as a benefit. Like many of the comments already posted, if the fit isn't right, you can say thank you, but no thank you.

The nurses that work as part of a hospice team are great. There is a point that quality of life is very important, and perhaps this is it.

To NancyGM from yesterday.

In this community you are not alone, I assure you of that.

Sent by Sue Chap | 10:52 AM ET | 07-15-2008

I cannot speak highly enough about hospice. They collectively are the most caring and compassionate group of caregivers. They know their stuff, they let you tailor your experience to fit your needs and they answer all your questions and fears in a straight forward and kind manner.We never felt pushed, rushed or over-looked under their care. One of the most important aspects of hospice is the guiding hand and constant support they give to the "lifegiver". Without them I would have been lost, frustrated and confused. With them I was given the opportunity to care for my father in my home without ever having to put him in a hospital. I say "Go for it."

Sent by Penny Coeur d'Alene, Idaho | 10:56 AM ET | 07-15-2008

Leroy,
I think we need to change the name of hospice. Too many patients think they have to wait to call hospice until they feel that they are near the end. That is not what hospice is about. Hospice is about giving you the best possible quality of life during the time that you have. The sooner you allow this team to help you, the better off you will be. They are expert in symptom management and they can help you look at issues that may not have occurred to you yet. If there are things you want to do, or need to do, before the end of your life, hospice can help make it happen. It is a comprehensive program, with social workers, chaplains, nurses, pain management specialists, and others. Hospice does NOT mean you are giving up on life -- you are embracing the time you have and trying to make the most of it. I am looking forward to having the hospice team help me to prepare my children for the time immediately after my death. I know it will be difficult for them to go through the house and decide what to do with everything. My sister can help them up to a point, but they were born in this house and we have had some of the same neighbors for their entire life. I am making a video for each of them because I won't be there for their weddings and other special events, such as my daughter's debut at the Met. I have always planned to be sitting up front when she first sang at the Met.

So -- embrace hospice Leroy. It's not a four leter word.

Sent by Debra, 3 primary cancers, now with metastatic disease | 10:57 AM ET | 07-15-2008

Leroy, I think it would be difficult for me to admit that I NEED the hospice help, too, and only you and Laurie can make that decision. Perhaps knowing that it's there for you when you feel you need it is enough for now. Bless you, Leroy. Sending healing wishes your way.

Sent by ann | 10:58 AM ET | 07-15-2008

Leroy:
I don't "blog" but I feel a need to thank you for sharing your thoughts with those like me who "lurk" but who care deeply about you and your welfare. I have come to respect and admire you.

Sent by Andrew Linden | 10:58 AM ET | 07-15-2008

I think everyone's advice is very wise, to try to do whatever feels like it will be most helpful to you and Laurie, with the understanding that whatever your future holds, hospice care will not make it move any faster, I don't think.

I'm sure you and Laurie would both dearly prefer to have you home, so perhaps once you even start wondering whether it's time, that means it's probably time. But as everyone has noted, it's a decision only the two of you can make.

Best thoughts, best wishes, and deep thanks as always for your willingness to share this with all of us.

Sent by Linda | 10:58 AM ET | 07-15-2008

My thoughts and prayers are with both you and Laurie, Leroy, as you make the decision about whether or not to call Hospice. I personally think calling Hospice is not a signal that the end is near but rather a reaching out for additional support at a time when it is needed.

Thank you, Leroy and Laurie, for sharing your most private thoughts and emotions on life and death which will continue to open the doors for all of us to be more open and honest about the process of living and dying.

With love and gratitude

Sent by Molly | 10:59 AM ET | 07-15-2008

LeRoy,
Just do it. It's a natural step in the progression anyhow and there's no downside if you chose a day earlier in the timeline than a day later.
It's been very interesting following your experience as we've been on a similar path. I signed up with Hospice late last week. My cancer has fairly recently unraveled as well. The bottom line is cancer sucks so make the most of it, and Hospice is one of the opportunities you have to grab on to, thus the basis of my advice to "just do it".
Best of luck.

Sent by Pam | 10:59 AM ET | 07-15-2008

It would appear most all of your "blogging caretakers" agree that talking to Hospice is a positive move. When most of us visited colleges, we didn't actually choose to attend every one we visited. We visited just to "look" and imagine what living in that place would be like. That is all you and Laurie are doing..."just looking right now." Visiting with Hospice is just another aspect of your journey. I think about you every day and care deeply about you.
Susan

Sent by Susan Paprocki | 11:03 AM ET | 07-15-2008

Hospice is a hard decision to come to, but not one that you will regret. And if you get involved with them and decide that it's not what you need right now, you can cancel it at any time. There are different levels of involvmentm, and you can also decide how much care you want them to give you at any time. You still have options - this just helps both you and Laurie. They have been such a joy and comfort for my family as we deal with my dad's decline.

Go for it Leroy!

Danni

Sent by Dannielle Higgins | 11:05 AM ET | 07-15-2008

Be prepared, know your options and follow your heart.

I'm working up a Home Help, Hospital, and Hospice (4H) plan. I figure conditions will ultimately decide home or hospice.

A hedonistic resort style hospice with an open bar & never closed "whatever you want" kitchen is probably too much to hope for... but if you find something like it... let me know.

Hold Fast

Don MacLeod

In my heart, I desperately want to spare my wife the morning she awakes alone to my mass but not my warmth. My elderly folks want to care for me... but at their age it's a roll reversal that risks becoming another sour reminder of my failed obligations. My sister would do anything... but knowing the burdens she'll inherit... what I want most for her, & the rest of my family, is a life less encumbered... at least for now.

Hence, 4H

Sent by Don MacLeod | 11:05 AM ET | 07-15-2008

Hey, Leroy -- in my experience, hospice is NOT about giving up ... no way, no how! Hospice is not about the last minutes or hours or days or weeks of life... it's about optimizing whatever time is left, supporting both the patient and the family. I think that sometimes folks hold off because involving hospice feels somehow like 'giving up.' I think hospice is all about NOT giving up... not giving up any possible quality of life, not giving up on any possible comfort, not giving up on any possibility of more good days. Hospice can help with all of that.

Sent by Dorothy | 11:06 AM ET | 07-15-2008

I remember that you had a conversation with some hospice folks awhile back. Was there something they said that turned you off? Most towns of any size have more than one hospice program, I believe.Maybe Laurie or a friend could investigate other options. I'm sorry this decision is so hard for you. The main thing is to relieve your pain, and they can help with that. Do you worry about being too "out of it" from drugs? From what others here have said, it sounds as if you will still have control over how much you are given.

Wishing you clarity and peace of mind today, Leroy.

Sent by Doris | 11:06 AM ET | 07-15-2008

Leroy...my dad was zapped of all his strength and "will to carry on" by the time he decided to enter hospice. He was with us only 11 days after he entered hospice care. Our family knows now that Dad missed many "pain managed" good quality days because we waited so long. Knowing that your "words" on the Blog are so important to your well being.....please consider the relief and improved stamina that hospice care will bring you, so that you can continue all that IS you..... as you live and love life to your fullest possible potential.
You and your loved one are in my prayers.

Sent by Pamela O'Mara | 11:09 AM ET | 07-15-2008

Dear Leroy:
I am one of those "lurkers" who has been following your blog from the beginning. I started checking in about the time my beloved only brother was diagnosed with liver and pancreatic cancer. My sisters and I were in a panic because it all happened so fast. I used the blog to guide me many times. When we finally had to tell my Mom, who was 92 at the time, she just gave up on living and passed away 5 months before he did. This whole period was so traumatic and I was drawn to your blog everyday looking for clues on how to deal with all the emotions we were going through. I have laughed and cried and been amazed at the depth of feelings and joy and wisdom displayed by you and your bloggers over the past two years. Your blog became a lifeline to me. I couldn't let the opportunity pass to tell you how very much I admire you and Laurie and all the wonderful members of Leroy's Army. One more thing...my brother kept refusing Hospice and only went in to a facility in just his final hours. I wish he had at least given them a try with some in-home care. He thought he was sparing us and never wanted to admit what was happening. We ended up so distraught because we didn't know what to do to help him. I think we all would have benefited from Hospice.

My thoughts and prayers are with you.
Betty in Florida

Sent by Betty in Florida | 11:10 AM ET | 07-15-2008

Every living creature, human or otherwise, is preparing for the end from the moment of birth.It seems to me Hospice is just another step one can or cannot take. In retrospect, I wish we had had it earlier. He would have been much more comfortable. Each area has a different kind of Hospice I have found. In New Jersey my brother-in-law had it for over year. I have not met anyone involved in the program who was not a caring person. However you do it, Leroy and Laurie, it will be right. God bless you all.

Sent by Lucy | 11:10 AM ET | 07-15-2008

Decisions are a part of living...just give it a try...if it's not for you..you can always opt out...

Sent by Jo Ann Baswell (formerally Margate, FL) | 11:10 AM ET | 07-15-2008

I think you are struggling with the mental side of hospice. Let those thoughts go and think of them as your relatives who are helping out. Be comfortable above all.

Sent by DiAnn | 11:12 AM ET | 07-15-2008

Hospice may begin with home visits with your hospice RN. Allowing you transition time. It allows both you and Laurie relief-from pain and the 'extra' care- to spend more quality time together in better shape. Try it out. If cancer progresses, then you're ready for the comfort of a new place that isn't a hospital.You know that world only too well! It is better to spend time in hospice than there when independence counts. Being in today counts. Being grateful for today and what you'd like to accomplish be it big or small counts. You and Laurie count.
God Bless you and God Speed in your journey. You have given hope and a full measure of devotion to those who live in Cancer World.

Sent by Jo-Ellen | 11:16 AM ET | 07-15-2008

Hospice, I would love to be able to get hospice care for my spouse. My husband is 94 years old with Parkinson's and accompaning dementia. I am employed and have to work full time, consequently most of the time he is left alone. Hospice is suppose to be for the last 6 months of life. No one really can predict how long anyone of us will survive. Will may spouse live to 95, 96, 97, no one really knows, but he does not qualify for hospice care. The wealthy can afford outside care, the poor have MediCal. We qualify for neither. My physician says some patients on hospice have been known to live another two years. Go for it. It will make life easier for Laurie. No one can predict the future. You just hang in there and let others take provide for the physical part of your care.

Sent by Barb | 11:17 AM ET | 07-15-2008

Leroy,

Please. Call. Hospice. Now.

If you are even asking the question, you need to investigate what hospice has to offer.It isn't signing your death certificate; it is a helping hand to make your life easier. Please call them, see what services are available, and then decide.

Blessings for you and Laurie at this hard time.

Sent by Diana Kitch | 11:22 AM ET | 07-15-2008

Leroy...I would have you think this morning of ART BUCHWALD.

His hospice stay became an adventure and provided fodder for many more articles and experiences.

I hope you are able to look at hospice as a path to pain relief and help.

Peggy

Sent by Peggy | 11:24 AM ET | 07-15-2008

Leroy, I understand. Hospice is a very touchy subject and a HUGE step to take. No matter how great hospice might be, no matter what anyone says, in most cases, employing hospice means the end of active, medical care. And, we (and the docs) know what that means.

Most insurance companies will pay for only one type of care when what is really needed is a kind of "bridge care". Many patients and families could benefit from care that builds in palliatative,holistic, comfort measures (esp.pain management) along with the continuation of active (meds, chemo, radiation,etc.) medical care. It is an artificial boundary that's been drawn by the insurance companies. Sometimes, home health care, in the form of visiting nurses, can fill the gap. Have you looked into that for now?

Of course, it is impossible to really know how things will play out (ie Art Buchwald!), but stats show that most people bring in hospice care at the very end, usually weeks, if not days, before death. Hospice people will tell you that's it's better to bring them in sooner to really benefit from all that they can offer and I'm sure that they are right. But, there are limitations to what they can offer and it's a hard step for most people to take.

For my husband and me and his oncologist, it was, perhaps, the most difficult decision. It meant that he could stay at home in relative comfort but it also meant the painful loss of our whole medical team with whom we (like you and Laurie)had established close, trusting bonds and the loss of any real hope that he would get better. We all knew that it was the end. We were blessed that his oncologist, a colleague, visited him once at home but that was "above and beyond the call of duty", and on his own personal time.

My husband secretly hoped that, after a bit of hospice respite, he might recover enough strength to restart chemo but that never happened. He died 11 days later.

Leroy and Laurie, research this option carefully. Not all hospice agencies are equal. They differ from area to area and within regions. I know you had a visit a while back. Make sure you feel comfortable with the providers as they will be coming into your home, if you choose in-home care. If you require a lot of physical care, an in-patient facility might be best. Do your homework and when the time comes, if hospice is the right decision for you, you will know it and be able to move forward.

But, remember, hospice is an option not a requirement. You may want to stay under the care of the wonderful medical team that you have put together and has been with you all along . That is a valid choice also. Ask them to refer you to visiting nurses now.

Best Wishes.

Sent by Marilyn | 11:25 AM ET | 07-15-2008

My thoughts and prayers are with you and your family at this time.

Sent by Lisa Gossett | 11:26 AM ET | 07-15-2008

Leroy,
Go for it...let hospice help you with your pain. Then do what my friend, Margaret did...I had been out to tell her goodbye, as everyone thought she was in her last days. I couldn't get in touch with anyone at the home for about a week after that. Then one day I picked up the phone...It was Margaret! In her wonderful Alabama drawl, she said, "Pat, I've decided not to die; find me a doctor who'll give me some chemo." Margaret lived a fabulous year...came to every party and loved her reputation as a graduate of hospice.
Love to you, Leroy, as you figure out how to do this. Do remember that you can get on and off hospice several times and still have it covered on your health insurance plan.
Pat

Sent by Pat McRee | 11:28 AM ET | 07-15-2008

Leroy,
If you were seeking advice, I'd say that 100% of your blog friends think you can't go wrong trying out hospice care. Sometimes the decision-making aspect of managing cancer is the hardest part, isn't it? So anxiety inducing. But then again, we think we want to be in control. Go figure.

Everyone's comments on this blog over the last year have definitely changed my attitude about choosing hospice care when the time comes. It seems to me that "better pain management" are the operable words, regardless of your prognosis, and that's better for the patient and his/her caregivers.

Sue M., wow, what an inspiration you are. So many of us could do likewise. Perhaps when I can no longer work, I will also volunteer as a hospice care giver.

Hope you can get outside, Leroy, and enjoy some beautiful weather like we are having in the Philadelphia area today.

Sent by Diane | 11:28 AM ET | 07-15-2008

Leroy,

My thoughts are with you on your journey as always. As so eloquently and informed as the comments are above, I have little else to offer, other than hospice is another signficant level of care and tool against the disease, use it when and as needed. If you are questioning whether or not it is time, it probably is time, and the benefits (while psychologically may be tough at first), are all positive.

Best regards to you and Laurie,

Dave

Sent by Dave | 11:29 AM ET | 07-15-2008

Leroy, the word "hospice" quite literally means "a place of shelter."

Living, not dying, in a comfortable shelter is the goal.

Sent by Kim | 11:31 AM ET | 07-15-2008

When faced with challenging decisions related to my son's care, my mind kept going back to a quote from -- of all places, "Star Wars Episode I". While the movie had it's flaws, there's a scene where Anakin Skywalker must choose to leave his mother. When he asks her if he'll ever see her again, she places her hand on his chest and replies "What does your heart tell you?".

If you can, silence the inner voices that follow their habit of calling out pros and cons, pushing visualized scenarios into your imagination. Just stop them for a minute.....What does your heart tell you?

Sent by Tym | 11:35 AM ET | 07-15-2008

I have been reading this blog since I watched the Discovery TV program, but have never posted before. I am not a cancer patient, but the daughter of two current colon cancer survivors, and have several friends who have, or whose spouses have, been under hospice care. In each instance, the surviving family members have commented that they wished they had contacted hospice sooner. Pain management for the patient, support for care givers - the hospice staff was invaluable. Just consider it another "treatment" you want to make available to yourself on this journey. May you "flunk" hospice as others have done! Thank you for the amazing gift you share with all of us at this blog.

Sent by Kathy | 11:35 AM ET | 07-15-2008

I have followed your blog for some time, but I've never written a post before. I don't have cancer, and no one currently in my family has cancer, but my father did die of it at the age of 44. Anyway, that's not why I'm writing today. I just wanted to say that I am blown away by the daily decisions you are forced to face, Leroy. Me, I had a bad day yesterday. Nothing went smoothly at work and it ended with my hand getting stuck in the doors of a Chicago city bus (I was on the inside, trying to get off). Now I look at my day yesterday and think, "who cares?" It was a day I can forget and move on. My decisions amounted to where to go to lunch and whether or not I felt like meeting up with friends at the end of a bad day. I think now that any day that has those kinds of opportunities, whether or not a person takes them, is a pretty damn good day. Reading your blog has given me that perspective.

And I thank you.

Sent by Jerry | 11:36 AM ET | 07-15-2008

Hospice will not only make your lives easier it will give you a very different outlook. You should concentrate on being comfortable so you can enjoy the little things you want to do. Hospice will help you manage that. Love to you and Laurie.
Antoinette Comprelli, NJ

Sent by Antoinette Comprelli | 11:40 AM ET | 07-15-2008

You will make the decision that is right for you. I know that it was a difficult decision for my dad to make, as was the decision to have home care even before it was time for hospice. In hindsight, I wish we could have helped him decide for hospice earlier, I think it would have made him comfortable instead of how distinctly miserable he was (when he didn't need to be, while he was trying to "be strong" for everyone else). But it's not something that should be forced on the individual who is central to the care. And, as Holly Anderson said, hospice workers treat everyone in the room, everyone in the life of the patient--they even offered counseling for my mother who had been divorced from my dad for 30 years!
I am thinking of you and Laurie--go well, cousins.

Sent by Julie | 11:47 AM ET | 07-15-2008

Okay, so I'm got to offer an alternative view here. I think hospice varies a lot, by organization and by the particular persons who provide service to you. In my husband's case, the decision to utilize hospice meant a great divide, a break from seeing his oncologist and nurses directly and switching to a whole new team who didn't know him and were much more death than quality of life focussed. This had an extraordinarily negative effect on him. He felt his doctor and team had both abandoned and given up on him and left him to die. Having established relationships with your doctor etc. is important to a person, and to have those withdrawn can be bad. Too, the particular nurse he was assigned initially was not good. My huband had been living on will power and spirit for some time, and much against the odds. The abrupt shift of gears etc. did, I believe, contribute greatly to his death 2 weeks later.

Now, some would say he probably had been declining greatly for a month or so, but he didn't think so and he wasn't living that way. Nothing will ever convince me that a really harsh segue to hospice didn't hasten death by destroying his spirit. A few others who saw him, including an AIDS nurse, felt similarly.

Leroy, if your consideration of hospice doesn't include severing other medical relationships and is all about home health aides, help with pain medicine and similar, then it could be good. But! Strong caveat emptor. Not all hospices workers and organizations are the same.

I remain disgusted and sorry about how my husband's was handled.

Sent by Teri | 11:48 AM ET | 07-15-2008

I'm not in your shoes Leroy but any decision you make I go with. all I can do is share my experience I'm not a big advice giver. All I can say is people tend to jump on the hospice bandwagon all too soon. If YOU feel it is a sign of the beginning of the end then I listen to that which means you are not ready yet. Even though it provides relief from pain etc...I have experienced that it is often the influence of the care givers that push the patient into hospice. The patient often isn't ready and 'gives in to the need' of it because it seems like the 'right' thing to do. This is your decision. When you feel it is right for you then hospice will serve it's purpose. What ever you feel that is. And if you feel and want to continue ahead without it there are other ways to get pain management without having "experts" come in and 'help' you be 'more comfortable'. However anyone wants to rationalize it hospice is our societies 'accepted' way of dealing with the messy truths of death and bringing one to the end of one's life without calling it that. Yes, Hospice is a compassionate way of helping families deal with the approaching end so they can better enjoy the last days, months, whatever time is left together. But it isn't always the best way. I have cared for four loved ones and a few others to their life ending moments. The four loved ones were very difficult situations. Two decided they did not want hospice. We created a caring situation, including pain management that was loving, complete, respectful and maintained the individuals dignity. This was not easy doing it on our own but it was well worth it and was much more fullfilling in the end to the dying loved one and the care givers alike. We all agreed on this at the end and said our goodbyes with out having to rely on anyone else to tell us when the end was near or what we had to do for our loved one over the last few months. The two love ones that chose hospice never said "oh, I'm so glad we chose hospice". It just worked out that's the way they chose to go. We told them that what ever their choice was we would accept their decision and go with it. They also knew they could ask hospice to leave at any time. Now, there are endless good reasons to choose hospice. But nothing substitutes for proper discernment when making such a major decision. Love as always to you. Graham from Sag Harbor.

Sent by Graham G. Hawks | 11:51 AM ET | 07-15-2008

Leroy - I don't think you will regret bringing Hospice in early. Usually they are brought in too late.

Take care

Sent by Elona | 11:53 AM ET | 07-15-2008

Leroy, The Hospice people are great, but you already know that. It is a big step toward the inevitable conclusion. It may give Laurie more time to just be there for you. The roll of lifegiver changes for her if you take some things off the table. I savor my privacy, as do you, this step removes a certain amount. But what other choice is there?? I hate this, I wish you were getting better, wishful thinking. This move could improve the quality time you have together. Thoughts and Prayers. Stan

Sent by Stan Wozniak | 11:56 AM ET | 07-15-2008

Hospice is a great program. Going into hospice is a huge decision. My husband went in on August 1st and died on Oct 5th. Colon cancer. Hospice brought so much relief. I think it will depend on *how* conscious you would like to be. My husband did NOT want to be conscious, he wanted to be put out of his misery. He was 50 years old.

I also am fighting cancer. If I knew that I would be dying soon (what is soon?), I would want to be surrounded by hospice and the right hospice nurse and to be conscious and try hard to accept the inevitable.

Sent by Janell | 11:56 AM ET | 07-15-2008

Leroy,
I think historically we have viewed the decision to call in hospice as raising the white flag and signaling that death is near. I think times have changed and it is no longer that way. Of course, I am not the one sitting here having to contemplate the decision. There is a large part of me that feels this decision is no one's decision, but the person with the illness. Having said that I think there comes a time when we also have to consider what it could provide not only for us, but for our caregivers in terms of assistance and support. Don't let anyone bulldoze you into it or feel guilty if you wait. It is after all your life. When you are ready, I think you will know. Perhaps you could try it. It's not like you can't "fire" them should you decide it isn't working for you.

Janie

P.S. You mentioned the other day there would be some problems in doing a book. Would it be possible just to do a book with just your journal entries and not include the comments from the bloggers? It would be such a contribution and gift to those not yet diagnosed.

Sent by Janie | 11:59 AM ET | 07-15-2008

Leroy and Laurie,
Can you do hospice at home? With my limited experience I would encourage you to go for that option if it is physically possible. I'm hoping that you two can work out a strategy that is good for both of you. I wish for peace and comfort for you.

Sent by Eleanor | 11:59 AM ET | 07-15-2008

Dear Leroy and Laurie:

Remember how Art Buchwald "failed" hospice and got to go home to Martha's Vineyard, laughing all the way?! Hospice does not mean that the end is near...it just means that there are wonderful folks (nurses, chaplains, volunteers from all walks of life) whose sole mission is to help you and your loved ones with any questions or concerns or needs you have. I have never ceased to be amazed at how wonderful the hospice concept is...and i hope that when my turn comes, i will embrace their services wholeheartedly. I know it's scary, because over time people have come to think of "calling in hospice" as tantamount to "dying" - - but unfortunately that perspective usually only means that folks wait too long to achieve the benefits that hospice can provide.

Your heart, and Laurie's heart, will tell you what to do...but having had several friends and family members cared for by hospice (in all kinds of settings - - home, nursing home, and residential hospice) i cannot say enough good things about them.

Love to you both - - and to everyone (including all members of this blog)who care about you. And THANK YOU for your courage and kindness in sharing these thoughts and questions with all of us - - we will all confront these issues ourselves one day and will be better for having thought about them along with you.

Love from Suzanne in Houston

Sent by Suzanne | 11:59 AM ET | 07-15-2008

Hospice is not surrendering to the beast. It is calling up reinforcements as you and Laurie approach a new battlefront.

Sent by Marcine | 12:00 PM ET | 07-15-2008

Dear Leroy~ What a wonderful optunity for you and Laurie to make new friends and turn over a new chapter in your lives. You both enjoy meeting people and broadening your options. You are not GIVING UP, just OPENING UP to new ideas. Sounds like more "boots on the ground" for your Army! Love you.

Sent by J C R | 12:05 PM ET | 07-15-2008

Leroy,
As always cancer presents more tough decisions--this is your decision to make, because everyone's journey is his own..you do what you feel is best for you and Laurie.. i'm sorry that you have to make yet another hard choice.. sending you positive thoughts..

Sent by yvette | 12:13 PM ET | 07-15-2008

After reading today's comments would you dare do anything else??? :-)

Seriously: we'll support you ***whatever you choose***!! Call hospice for Q&A/FAQ and then make a decision.

Sent by Liz L. | 12:19 PM ET | 07-15-2008

Leroy, I lived my father's death from glioblastoma multiformae in 2002. I didn't know then that there was a process that the body follows to die. There is a lot of information on the Internet about this subject. Just thought you would like to know and avail yourself of the information if you want. I've been with you for all of this journey - thank you for your graciousness.

Sent by June Moriarty | 12:21 PM ET | 07-15-2008

My friend Leroy,
Even though we have never met I feel we know each other from reading your blog and being in this cancer club with you. Today I read your blog and my heart ached again for Laurie and you.
I truly believe that just because you choose to have a better quality of life it does not mean giving up hope or that your experation date is soon. Only God has that power to decide when the date is up. You have a bright shining spirit and are a gift to all of us in this club with you. Get the pain relief but refuse to give up. Hospice will give you time have quality time with Laurie.
I believe that our attidudes have a big influence on how we do with this disease. When I was told I had cancer and my old oncologist said go home and live the next six months....no treatment just have a good quality of life. I fired him. Found a doctor who would treat me and every six months I send a note to my old oncologist saying you were wrong I am still here! I want him to lots of cards as I want you to be with us for as long as can be.
Be kind to yourself when making your decision and just think of it as a step in pain management.
Hope you and Laurie have some peace in your souls today.

Sent by Miriam | 12:24 PM ET | 07-15-2008

Dude! The folks at Hospice are typically a wonderful group of people. They're not only there for you, but Laurie and the rest of your family, too.

My father, ever the tough guy, didn't want Hospice care at first. But, his treating physician's staff talked him into talking with them and everybody was glad he did. After a very long, hot, muggy discussion on the back porch of his FL home on an August afternoon (my dad didn't break a sweat, but the Hospice intake coordinator just about melted into a puddle of goo), the 'ol First Shirt decided to enroll not for himself because after all, he was a tough guy, but for his family. He wanted us to have the comfort, training, and care they provided. And we took advantage of it and read the books and went to the classes. Not that the remaining two months was a day in the park, but it helped us better understand the process and the changes he was going through. It also helped us better understand our own feelings and emotions.

When the time came for my Dad, the first person we called at around 3am (he passed around 2am, but my mother wanted some more time with him), was his Hospice nurse. She was at the house in about 30 minutes. She checked him out, checked us out, and from there we did everything we needed to do. Which wasn't much, because the 'ol First Shirt was a planner and had pre-planned everything.

In October of this year, my brother, sister, their families and I are all going to Arlington National Cemetary to observe the tenth anniversary of my father's passing, as that's where he and my Mother are now. Our lives have gone on and through us, my parents still live. But, I digress...

The upshot is this: I know that if I ever find myself in a situation where I need them, I wouldn't hesitate to call Hospice and use their services. But, it's a personal choice. And you never know when the right time is - well, just because you never know. Look at Art Buchwald...he made a whole new career out of being in Hospice. So, like one of the other posters said, what does your heart tell you? Follow your heart, talk to Laurie, talk to your family. And I bet the answer to your question will just fall into place.

I wish you peace.

Sent by Joyce in FL | 12:30 PM ET | 07-15-2008

The word "hospice" has such a stigma attached to it, which is too bad. We didn't hesitate when the doctor said the H word, and we were talking to a nurse that very afternoon.

Our care team included a nurse, a social worker, an aide and we could have also added pastoral care if we wanted. They treated BOTH of us. The social worker talked to us separately about issues and arranged the hardware we needed (like commode chairs and things of that nature) and the nurses were more than happy to step back and let me manage as much care and treatment as I wanted, be it giving shots, changing dressings, whatever. I think they were glad for the trained help sometimes. They also let me take a break now and then so I didn't have to do everything all the time.

There's also follow-up for the bereaved. I had grief counselors available to me 24-7 for the first year, and I still get the hospice newsletter and am able to attend any support groups I choose at any time, free of charge, if I feel the need.

At the end of the day, it's up to you, but don't let the stigma of the H word scare you off, and if you have a bad experience with one hospice organization, there are others.

Sent by Bruce | 12:31 PM ET | 07-15-2008

don`t do it leroy try to get more treatment. join a clinical trialor somethingtheres real good ones all over

Sent by kim parris | 12:33 PM ET | 07-15-2008

I know that it must be hard to not see it as somehow not remaining engaged in the battle, but, really it is worth a try.
I took a hospice volunteer training course several years ago. They told us of patients who were doing well when the 6 month prognosis date came and went. If that doesn't happen, they seem to have more access to the best pain management which i am sure is worth it's weight in gold.
Of course, the individuals are everything. If the nurse or aids aren't good matches, ask for a different ones. You should have 24 hr access to a nurse that can adjust meds...I am sure this is a very difficult step, but you can always change your mind. If you chose this, I hope your pain is finally managed really well. Best of luck to you and Laurie with this decision. Big hugs to you both.

Sent by NancyGM | 12:36 PM ET | 07-15-2008

Good Morning Leroy & Laurie!
Hospice is only there when you need them. You,Laurie and Hospice decide how much they can assist you and what your immediate needs are. You are not turning you life over to them, they are there to help. When and how much is decided between you, Laurie and Hospice. Hospice is not a death sentence, and your not giving up. They are GREAT!. You must decide and only you, but I think it's time you give them a call. Look at it this way...it's more people helping you !
The Best to the both of you,
Page Hendryx - Gresham, Oregon

Sent by Page Hendryx | 12:39 PM ET | 07-15-2008

Leroy
I am not sure anyone is "ready" for hospice. I would hope if I get to the point where I need hospice help, I can look at is as moving on as opposed to being the end.If you are even thinking about it must be a sign that you may be ready.
Heartfelt prayers to you both.

Sent by Pam from Mass | 12:44 PM ET | 07-15-2008

Dear Leroy,
My thoughts and prayers are with you and Laurie. Be well dear friend.

Sent by sasha | 12:51 PM ET | 07-15-2008

Leroy,Leroy,Leroy, You can never know how you have changed my life. I know nothing about the decision you are about to make. Only you can do this! I do know in my 74 years, surviving a heart attack and cancer, that I have never met anyone like you. We cannot change what our ultimate future brings, but as you have shown, some can leave a mark forever. I will remember you for the rest of my life for your doccumenting what most of us will face and could never be able to speak of it as you can. For all those who respond to you daily, you will have left your mark. I put you up there with all the great artists of the past. As you have said, the Cancer World is permanent.I will not escape wondering when it is coming back to get me. I will always have the comfort to know that I knew you and will live my remaining life different because of you. Enough of that, please know that there are a lot of us with you, Buddy. NEVER GIVE UP, NEVER GIVE UP, NEVER,NEVER, NEVER !!!!!

Sent by Ted Kindler | 1:04 PM ET | 07-15-2008

Hospice care will make things a lot easier for you and for Laurie, and give you time to focus on other things, like reading and writing. Hospice and palliative medicine is a blessing for patients, not something to fear. Live strong, Leroy.

Sent by Steve | 1:06 PM ET | 07-15-2008

Hi Leroy, Consider giving yourself permission to try it out. If you don't like it or if it is too soon, you'll know and you can just tell them you've changed your mind at this time. On the other hand, they may be able to offer some things to make it easier for you and Laurie to get through this period of time. I've heard that people go in and out of hospice multiple times and my understanding is that's a good thing. Please consider just giving it a try. No one will be hurt if you decide that it's not for you. And, the last thing in the world you're doing is throwing in the towel. On the contrary, you are being an advocate for youself and Laurie and getting help figuring out what to do next. God bless.

Sent by Kim | 1:07 PM ET | 07-15-2008

As many have said - talk with the Hospice people. They have lots of different things they can provide to make both of your lives a little easier to cope with. These are certainly not easy decisions, nor wanted questions; but my experience with Hospice has been all good (they helped with my Mom and a few friends as well). They are there when you need them but can also be in the background, around the corner when their services are not as needed. Do know that I and all these other people are there beside you in spirit and would do anything we could if we were there. We're all holding both you & Laurie's hands. Lean on us when it's heavy, share the load. We've all been there or will be and we're are all in this game together!

Sent by Tom May | 1:11 PM ET | 07-15-2008

Well, you put the question out there and boy oh boy, did you get advice! You are blessed with so many of us who care for you; hurt with you and want you to be as comfortable as possible.

Lots of wonderful, helpful comments so far on both sides of the issue. I hope they help you and Laurie come to a decision and find some peace.

I'm trying to wean myself off morphine and empathize with the large part pain plays in my daily life after 4 surgeries for lung cancer. Tho, not even close to what you are dealing with I'm sure.

I wish for you mostly adequate and immediate pain relief. Agressively seek all resources. Hopefully, that will allow you to enjoy the rest of your days, however many they may be.

All my best to you both.

Sent by Sara in MD | 1:18 PM ET | 07-15-2008

Don't wait. I just went through this. My partner passed 2 weeks ago yesterday and we waited to call hospice until 2 days before she passed. I can't describe what a help they were emotionally and physically. She didn't want to call them because of the stigma that comes with it, but it doesn't mean giving in, it just means you need to talk to someone who has done this before and with that comes so much comfort.

Sent by Laura Atencio | 1:19 PM ET | 07-15-2008

Apparently my comments from earlier this am did not post. So I will now keep this short as everyone else has made the same comments I had made earlier. Call Hospice....you will not regret it, I promise. Do it for you and for Laurie...you both need it and deserve their compassionate care. Peace...

Sent by Karen | 1:24 PM ET | 07-15-2008

Leroy:
You said, "I think it's a big step, in some ways, signaling that we're getting ready for the end." Haven't you already acknowledged that by "getting your affairs in order"?
By going in to the Hospice system you will not be giving up anything,and your pain will be lessened. If things work out well (I hope they do ) and you somehow get better you can return to your normal life.
I have seen quite a few cases where the patient, or the family, put off entering Hospice. I'm not sure what they were thinking. I would really be interested in knowing why you hesitate contacting Hospice. What is the downside that you see?
By answering that question you might help a lot of us when we reach this point.
Namaste,
Don

Sent by don winslow | 1:25 PM ET | 07-15-2008

Dearest Laurie and Leroy,
As has been said so eloquently, I can relate to your feelings. My mother never signed an advanced directive. She practically chased a young oncology resident out of a hospital room when he brought it up. We did a bit of educating then by telling him that this is not a no-brainer to someone who is not ready to die. Hospice care, which can be wonderful, has become code for the end of life. My mother found palliative care much more palatable, comfort care for you and for Laurie. Hospice and palliative care folks have so much knowledge and so many tools in their arsenal to help you.
That said, not all hospice care is equal, and some folks work better with you than others. No surprise there.
I detest getting unsolicited advice, so I also detest getting it. But there is a wonderful palliative care expert and pioneer in NOVA at the Capital Hospice. He is Dr. Carlos Gomez, and he is my hero. As palliative care is not a revenue producer for hospitals and health systems, it is generally overlooked. Carlos made the U.Va. Health System, in Charlottesville, VA where I live, see palliative care as a priority before people were aware of its significance. By chance, he took care of my mother, weeks before she died of ovarian cancer, and he stayed in touch with me when I was at home with her and out of town. He is a wonderful guy, even featured in Bill Moyers' Death and Dying series. Capital Hospice phone number is 703.538.2065 and it looks like Carlos' e-mail would be cgomez@capitalhospice.org.
I would encourage you to talk to him. My guess is that your wonderful work and reputation would compel him to talk to you, even if he is busy.
I am sending you both a tight, but not too tight, embrace.
Much, much love,
Mary A. Sullivan
Charlottesville, VA

Sent by Mary A. Sullivan | 1:26 PM ET | 07-15-2008

Such a traumatic decision to make. Insurance has made hospice for the last six months, but hospice is actually for when you want it. My mother made the decision three weeks before my father died. She regretted not involving them sooner. However, we had to use a nursing home for my father's last two days because there was no room at the hospice facility for him. We could not longer care for him at home, because he was so restless at night. I do not know what hospice does for the patient mentally, because my father had metastatic dementia, but they were a God-send to my family in helping with my father's care and our mental health. My father was much closer to his "time to die" than you are, Leroy. I know you will help one another with this very momentous decision, whenever you make it, and the rest of us have you in our hearts all the while.

Sent by Susan in the beautiful mountains of Colorado | 1:26 PM ET | 07-15-2008

Leroy:
My advice is don`t rush your decision, take the time you need. When the time is right I think you will know it. When you decide its time to go with the flow I think hospice is the right choice.

I watched cancer take my Father and Mother and I have had melanoma twice. So far I`ve been lucky and caught it before it spread. When my time comes to leave this world I pray I will be able to go with dignity.

I have been following your blog and think you have done a lot of good with it and I encourage you to keep it up as long as you are able.

Best wishes to you my friend, you are in my thoughts daily.

Jerry York

Sent by Jerry York | 1:26 PM ET | 07-15-2008

Think of it as just another road to take as we all travel on this journey with you.Peace.

Sent by Anne Burke | 1:30 PM ET | 07-15-2008

Dear Leroy and Laurie,

Yes, calling hospice is a big step. Maybe it's signaling the end. Maybe it's not. You just don't know. But hospice is there to help both of you, and help you they will. They're life-givers too.

Still lifting, praying, hoping!

Love to you both,

Sent by Janice J. , Los Angeles | 1:35 PM ET | 07-15-2008

Leroy,
I once was a social worker with Hospice. I was awed with the incredible gift the nurses and doctor's were given. I truly admired them, because for me I looked at the people who were sick and their circumstances as a constant reminder that we all were going to die one day, and I was not ready to deal with those emotions. However, those individuals who had made Hospice their career were such fun loving joyous people to be around and they had a wonderful sense of humor, which in my youth I had a misperception on what was acceptable in a field where I thought one had to always be somber. I think that what I learned most was that there are times for sorrow and times to rejoice in life. I believe the people who worked at Hospice felt that they were helping their "patients" to continue living a joyous life not riddled with pain and also giving them some power to decide how they want to feel while their disease continued to do it's battle on their body. I think one of the biggests obstacles for them was whether or not their loved ones were on the same page. I look at choosing to tolerate the pain as a sign that the individual wants to still battle the disease there by saying to it- "You are not going to win!" I b elieve receiving comfort from the pain medication is not saying "You Win" rather "You are not going to ruin the time I have on Earth with my loved ones by making me unable to enjoy their presence because of the way I feel physically." No matter what choice you and Laurie make, you both are not giving in to the disease-you are just living your life.
Peace be with you.

Sent by Lizabeth J. | 1:42 PM ET | 07-15-2008

Hospice is a difficult decision to come to..but starting a dialogue with them is important.... they may have a lot to offer. I'm sending good thoughts both your ways.

Sent by Krupali Tejura MD | 1:43 PM ET | 07-15-2008

Leroy:

I've listened to and read your words for so long. I've never taken the time to send my comments, though I've thought of you throughout my days. When my father was diagnosed with melanoma last January, I immediately reflected on your words as my reference for what to do and say. But today I will write to you about hospice. Others have told you about their experiences and I hope their stories will support you in your decision. There are two additional pieces of information that may help you. First, a recent study documented that patients with hospice care actually live longer (on average) than those without. Second, the vast majority of families who have experienced hospice wish that they had called earlier. The relief from pain and inner peace that you seek is the daily work of the hospice team. It will be their honor to assist you in your living.

Sent by Julie | 1:51 PM ET | 07-15-2008

JCR says it best, it is a new opportunity. It is not giving in but opening up the possibilities...
Peace my dear friends, many are with you today as always!

Sent by Laurie Hirth | 1:54 PM ET | 07-15-2008

Wishing peace for you and Laurie and sending love and prayers.

Sent by jen | 2:04 PM ET | 07-15-2008

What a difficult decision to make, Leroy. I would be thinking the same things you're thinking. My heart is with you and Laurie.

Blessings,
Kate

Sent by Kate in California | 2:06 PM ET | 07-15-2008

Hi Leroy & Laurie,
When I try to sort out a personal issue using my 'professional skills' I often come up with a very different answer. My professional reflexes reach for the best tool for a task but my personal reflexes resist the 'tool' I really need. Why is that?! At work, I know which go-to-person will help me with each task, and will hire professionals for haircuts, photography, and major home repairs - but treat major personal events as 'do-it-yourself projects!' Try putting on your 20/20 hat and see how you think about hospice variables.

Now,about pain - anything that can make "the WALL of pain" thinner between the two of you will enrich your time together. Don't let the beast steal Leroy's comfort or wear down Laurie's physical strength. Personally, Hospice helped our family with that.

Hospice is just another way to keep loading points on YOUR side of the scoreboard!

Sent by Karen - reader since Sept. 2006 | 2:08 PM ET | 07-15-2008

First time commentor, but long time reader. I have twice had the opportunity to be involved with hospice folks. In hindsight, both times were a positive experience for both the patient and the families - - to the extent one can have a positive experience with an organization that deals with impending death. They were very good at what they did, listened and gave good answers to tough questions. In our cases, we began both times when help was needed in caring for ADLs. The family can only help so much and do so much; having the trained professional there to give pointers and reassurance was good for all concerned.
Peace be with you - -

Sent by Doug W | 2:13 PM ET | 07-15-2008

My wife's mother went back and forth on wanting to treat her lung cancer, and not treating it. There were effective drugs she never tried. By entering hospice she made her choice to 'let go'.

Sent by Scott S. | 2:17 PM ET | 07-15-2008

If all the wonderful, supportive comments you have gotten today haven't convinced you to call in hospice...well I don't know what will.
Peace be with you.

Sent by Theresa Lovin | 2:25 PM ET | 07-15-2008

I AM SO SAD THAT IT HAS COME TO THE TIME TO THINK OF HOSPICE. HOWEVER, WHEN WE FINALLY AGREED FOR HOSPICE TO BE WITH US WHEN MY 20 YEAR OLD GRANDDAUGHTER WAS FIGHTING CANCER WE FOUND IT WAS GOOD. IT WILL HELP LAURA BECAUSE SHE WILL NEED IT AS BAD AS YOU. HOWEVER, YOU ALWAYS NEED SOMEONE THERE BESIDES HOSPICE. IF YOU SELECT HOSPICE AND IT IS NOT THE RIGHT HOSPICE, JUST REMEMBER YOU CAN LET THEM GO AND GET ANOTHER. THERE IS A BIG DIFFERENCE IN THE STAFF OF THE HOSPICE GROUPS. I ONLY ASK HOSPICE NOT TO SEND BACK ONE NURSE. THEY NEVER ASK ME A QUESTION. SHE JUST DID NOT RETURN. I CONTINUED TO WORK AND I HAD TWO WONDERFUL FRIENDS THAT WAS THERE WHEN I WASN'T AND I TOOK OFF SEVERAL DAYS A WEEK. I AM SO GLAD WE DID HOSPICE AFTERWARDS. MY GRANDDAUGHTER SAID SHE WAS GLAD TOWARD THE LAST. WHAT BOTHERED ME THE MOST WAS I DID NOT LIKE THEM BRINGING ALL THE EQUIPMENT THAT I DID NOT THINK THEY NEEDED AT THE MOMENT. I DIDN'T LIKE WHERE THEY PUT IT BUT WE ALL GOT OVER THAT TO THE SATISFACTION OF ALL. GO FOR IT.

Sent by MAVIS | 2:30 PM ET | 07-15-2008

Leroy,
If you have serious doubts then maybe it is not time. But what about your commitment to your blog? You have given all who have read an in depth (and painful at times) look at cancer from the inside. I challenge you to take the next step and keep on bloggin' baby - in comfort from the hospice. ( and beyond, that'll keep the readers attention) I'm sure Laurie could use the help and support. You're not giving in if YOU CHOOSE - besides, we know it's not in your nature to give in. It's just the next step - isn't that what you've been doing for 2 yrs now.

Sent by Henry W. Plag | 2:44 PM ET | 07-15-2008

When it comes time for me to make this kind of choice, I am empowered because I have learned so much from the honest blog entries. Like Andrew L. I am a lurker and deeply respect you and Laurie. Thank you.

Sent by Colleen | 2:50 PM ET | 07-15-2008

Leroy-
Could I suggest doing informational interviews with one or more hospice agencies that serve your area? You and Laurie could ask lots of questions and hear about options.
Additionally, not all hospice agnecies are the same. Care at your home, and or an inpatient hospice facilty are options. You might want to tour a potential facility, or send Laurie to see the options. I was asked to do this by my mother-in-law. She and my father-in- law eventually used both home and inpatient hospice.
With additonal information, I believe the right path will emerge for you.

Sent by Barbara Goun | 2:51 PM ET | 07-15-2008

God Bless you, Leroy. You have given so much to all of us who have gone unwillingly into the cancer world. Peace to you and Laurie.

Sent by Pat | 2:52 PM ET | 07-15-2008

Hi Leroy,
You are not giving up or giving in. You are just looking for a little more comfort and pain management. That is a long way from giving up. Many people have used hospice and then got to where they were no longer needed. Do what you need to do to make things better for you and Laurie. With Love

Sent by Teresa in WV | 2:57 PM ET | 07-15-2008

Maybe you could do a trial of it and see what you think. There is a point where "living with cancer" slips over into "dying of cancer". Talk to hospice about making the transition. It's what they DO. They'll take it from there.

Sent by Celeste | 3:07 PM ET | 07-15-2008

Leroy and Laurie,
God bless you both.
Whatever decisions you make, it will be right.

Sent by jessie | 3:14 PM ET | 07-15-2008

Hi Leroy:
Like so many of your blogs, your words really touched me. I agree with some of the other writers. You should try not to think about this as something bad or as some kind of ending. So many times you have explained to us that many of those assumptions don't turn out to be true. You are alive. You are living with this disease. If you decide to go to hospice, you will live some more with it. We are with you in our hearts and prayers, not because we're sad for your journey, but because each of your blogs has shown us how to live our lives, how to travel our journeys -- even when they are a little frightening. You are a soul filled with so much light Leroy. I especially loved hearing you and Mrs. Edwards speak a few days ago. I laughed and I cried and then I laughed some more. I'm rooting for you Leroy. I only hope I can remember even a fraction of what you have taught me.
Love - Tim Louis in Rochester NY

Sent by Tim Louis Macaluso | 3:20 PM ET | 07-15-2008

Dear Leroy and Lauri- Hospice is a way to let Laurie eep you so much longer-she can put all her energy into being your partner and love. Not your caretaker-it takes so much burden off of her and your other family-
there are so many "tricks" they know through years of care
That way she will never wonder if there was something more she could have done-
Plus she will never have to run for so many things that take her away from you
it's the greatest gift you can give both of you-time together-NOW
all our prayers
Randy and Robbie

Sent by Randy Cripe | 3:26 PM ET | 07-15-2008

Leroy, you've already gotten dozens of messages that said what I'd planned to say--that hospice is about comfort, not about 'the end,' and if comfort is what you and Lauri need right now, then it is time to make the call.

Good thoughts to both of you--
Pat

Sent by Pat | 3:30 PM ET | 07-15-2008

Dear Leroy,

As a hospice nurse, I like to tell our prospective patients, regardless of their illness, that hospice is just another treatment choice for those who have decided to pursue no further therapy for their disease or have exhausted other treatment options. The main difference is that with hospice, the patient and family are the focus of treatment, not the disease. I'll reiterate what others have said--speak with your hospice professionals and see what they have to offer. But believe me, the longer a patient/family is under hospice care, the better off they are in so very many ways. Best wishes and God bless you and Laurie.

Sent by Suzanne, RN, MSN | 3:35 PM ET | 07-15-2008

Please don't feel like choosing hospice services is giving up on living. It's a realistic and wise choice when reality tells you and your doctors that the cancer has progressed and there are no tricks left in the bag. Hospice can allow you to continue making the decisions that are important to you, while at home, with persons who have experience.

Hospice is not an all or none deal. It's very flexible in that the nurses and physicians can provide what you need and when you need it. Medicine, lab work, nutritional supplements, IV fluids, medicines..... all can be provided at home. If something goes amiss and you have questions, concerns at any time of day..... a hospice worker can be there to assist you and those you love.

If you enlist with hospice services, it's your choice to have full participation by hospice team or keep their participation at a minimum and just know they are available. And you can start with one choice and change your mind.

You will find that besides the obvious help they can provide, you can tap into their experience and wisdom of having walked with others down the same path. This is a remarkable group of people who have a lot to offer.

As always, this is another decision that is yours to make. I encourage you to visit and establish connections with a local hospice group and see how it goes.

Thinking of you and the others who are at life's door.

Sent by Leslie | 3:38 PM ET | 07-15-2008

Hello Leroy,There isn't much I can add that hasn't already been said here by people who have walked a mile in your shoes and the Hospice Nurses who have given hope and comfort.However I would like to say one thing.You are in the Land of the Living right NOW! Therein Lies your hope!I am sure you've received a wealth of knowledge and advice today! May you find unexpected hope and peace and joy today.Prayers and Love surround you my friend!

Sent by Allecia | 3:57 PM ET | 07-15-2008

you have enriched my life and made it easier to talk to family frankly when it is my turn in your chair

Sent by chris hiatt m.d. | 4:04 PM ET | 07-15-2008

Leroy:

if you can do home hospice and if you can use help with pain management why not just hear them out?

Hospice isn't giving up. Remember Art Buchwald? He was in Hospice and lived so long he went home.

He had discontinued dialysis and also had one of his legs amputated below the knee. He subsequently was released from the hospice, wrote a book about his experience and also resumed writing his syndicated newspaper column. He died surrounded by family members months later. Hospice treatment gave him the strength to live, resume his work And he worked in a few vacations there.

Having volunteered in hospice care for a good many years now I can tell you that people don't do hospice to die. They do hospice to live as comfortably as they can.

Far be it for me to tell you what to do sir. I am daily touched by your dedication to life and you are a source of great strength to all of us here.

But I don't think anybody here would like to think of you spending any unnecessary time being uncomfortable.

It would diminish the quality of the time you and she and you and all of us here have together. So maybe if it makes you feel like your giving up call it comfort care, call it the Hilton Hotel. Call it anything you want.

There are no rules saying you have to die in hospice care and we would all be very happy to see you leave and continue on this journey with us.

But if as you said you can use more pain management, then maybe it's not the worst idea to have them over and discuss how they can help you so that you can relax and smile and eat and do whatever it is that you and Lori feel like you want to. Instead of trying to figure out how to live with the pain and do what you want to during this time. Why do that work if someone will do it for you? And if you don't like what they say then kick them out.

Regardless of your decision, we are all hoping for good days and good nights for you.

You and Lori are in my thoughts every day and thank you for providing this great community.

Respectfully,
Mark Blei

Sent by Mark Blei | 4:04 PM ET | 07-15-2008

I am thinking of you every single day, Leroy. You are an amazing man and inspire me to be a better person. Thank you.

Sent by LR | 4:08 PM ET | 07-15-2008

Hi Leroy- Hospice is as much for the family as for the sick person. My brother's family received tremendous support from them following my nephew's suicide 17 years ago.I never knew this was something they did.

I think so highly of them that I am planning to train to be a volunteer when my children are older.

I think Hospice will allow you and Laurie to have more time together while a helper takes care of some of the pesky details. And who needs all that pain anyway?

Sent by linda h. | 4:09 PM ET | 07-15-2008

You know, if you don't try it out and see how it fits you, you certainly wouldn't like to be forced into a decision.

So much for the easy words; good luck with a nontrivial action.

And as always, best wishes,

Sent by Dave Utrata | 4:18 PM ET | 07-15-2008

Leroy,

Comfort should be your only concern right now.
If you can achieve a decline in the level of pain you are feeling by going to hospice by all means GO.
Don't think of this as a final choice because it is not.
Feeling good--feeling no pain should be your objective. Make whatever time you have as comfortable as possible.
I will pray for you. God will provide.
Best,
Rita

Sent by Rita | 4:19 PM ET | 07-15-2008

Leroy what ever decision you make it will the appropiate one, your are not giving in, much less giving up!! you are just following your heart. God bless you and His peace be with you and Laurie. Have a comfortable day.
Marelly

Sent by Marelly | 4:21 PM ET | 07-15-2008

Dearest Leroy-
I too post for the first time. I thank you from the bottom of my heart for sharing your life experiences with all of us. Both my father and and one of my best friends died of cancer the same year. Reading your blog has allowed me to glimpse what they went through, and to come to terms with their deaths. I also celebrate their lives, and thank God for the time I had them. Hospice is a huge step; only you can make the decision. Read what everyone has written, and then decide what is right for you.
Thank you so much for letting us share in your experiences. It has meant more than I can ever say. You are a beacon of light in "cancer world" Keep shining.
Marianne

Sent by Marianne Bellenzeni | 4:21 PM ET | 07-15-2008

Hospice can alleviate some of your fears as well as pain. It is not giving in, giving up, it is taking care. It is for you and Lori to decide, but whatever the decision, may you walk in peace. Love from another warrior, Ellen

Sent by Ellen | 4:28 PM ET | 07-15-2008

Hello, Leroy and Laurie,

I've been lurking in the shadows reading each of your posts. Frankly I thought you would already be on hospice by now.

Laurie needs Hospice as much as you do. As the other 139+ wrote, just do it. It is time for both your health and comfort and Laurie's health and comfort to get the extra medical, psychological, and spiritual help that Hospice can provide. If we look back in your archives for this year or last year, can't recall which, you were contemplating Hospice back then.

The community told you then and we are telling you now that there is no shame, pessimism, giving in, giving up, or admitting death may be close. It is merely accepting a service that is important to your comfort, Leroy, and support and comfort for your "lifegiver" Laurie.

Don't wait. Just do it.

Sincerely,
Bobbie in Texas

Sent by Bobbie Hollis | 4:30 PM ET | 07-15-2008

Dear Leroy and Laurie,
I use to be a hospice social worker, now I am a future hospice patient. Hospice is about improving quality of life and making the most of the time we have. You don't have to give up the fight for more time, to increase your comfort level.

Sent by elissa | 4:32 PM ET | 07-15-2008

Lreoy and Laurie: The afternoon the nurse told me, "you ought to call hospice for your mother-in-law", I felt a great burden lifted and suddenly I could make sense of the future. They were a great help to us and handled so many details that gave us quality time with her. I hope you'll look further into this wonderful option.

Sent by Meg | 4:47 PM ET | 07-15-2008

Dear Sweet, Gentle, Laurie and Leroy -

Exhale, deeply. Acceptance is act of courage.

Inhale, deeply. You've worked so hard.

Exhale, deeply. Loss hurts.

Inhale, deeply. Holding one another helps.

Exhale, deeply. Acceptance comes.

Inhale, deeply. Love some more.

Blessings to you, Leroy and Laurie.

Sent by tally | 5:23 PM ET | 07-15-2008

Hospice is wonderful, but it is hard to give up on the idea that some new, experimental trial will extend life even longer. That stated, most people do wait too long to enjoy the benefits of hospice. Whatever you choose, it will be informative to everyone out in "My Cancerland."

Sent by N. Holmes | 5:29 PM ET | 07-15-2008

One option is hospice care at home. The main thing is not to wait. I have heard interviews on NPR, of all places, that said how too many people wait too long. They, and their loved ones, could have been much more comfortable. It is not giving up. It is accepting the support others want to give.

Sent by Karen | 5:42 PM ET | 07-15-2008

Dear Leroy and Laurie,

My earlier post today must be floating unread somewhere in cyberspace, so I'll try again, as one more additional voice advocating for Hospice care. Everything has already been said that I voiced in that earlier posting (and it's been said so much better!), so I'll not say much more ... Other than I recognize the depth and the signficance of your pondering, and honor that place. You continue to grace us with the voice of our common humanity, and the goodness of your spirit ~

Warmly and fondly,

Kim Forester

Sent by Kim Forester | 5:45 PM ET | 07-15-2008

Hi Leroy and Laurie,

Your posts are incredibly moving and the feedback is tremendous. Your experiences along with my other heartbreaking stories have directed me on a path to get involved in cancer prevention especially with younger kids. I'm planning to attend a symposium on nutrition and cancer held in DC this August. Is anyone familiar with this event? www.cancerproject.org/symposium

Sent by Emily | 5:49 PM ET | 07-15-2008

Please take the step. It does not mean the end. Let someone else do the support role. It was a blessing for my father as it will be for me when it is time. I am sending you and Laurie all the good ju-ju I can muster. You are in my prayers every day. With care.

Sent by anne lumberger | 5:55 PM ET | 07-15-2008

As Karen mentioned Hospice Care At Home is your answer.

Sent by Marelly | 5:59 PM ET | 07-15-2008

I've never written two notes in a day, but today will be the exception.

As I told you before, Pat went downhill so quickly with his breathing that he couldn't be moved from the hospital--he needed the high amount of pure oxygen only the hospital could provide. He only was in hospice for a day--for insurance purposes.

Two thoughts: First Pat was very upset that going into hospice meant giving up his wonderful oncology team--with his comfort level being of the utmost importance, I understood not wanting to start over after a 22 month relationship with people who had kept him alive.
Secondly, (and it's the reason I'm writing again) I noticed two messages in a row, one from hospice nurse, Suzanne, and then from Leslie, that make people fearful of hospice. One mentioned "no further therapy" and the other "no tricks left in the bag".

I'm sorry, that does sound like giving up hope. I know that's what Pat felt.

Leroy, you definitely should look into the hospice groups in your area, but as always, with open eyes and mind.

Hugs to you both.

Sent by Kathy B. from Michigan | 6:13 PM ET | 07-15-2008

Leroy, only you know when the time is right. But remember, hospice will not take away who you are, the love you've shared, the varied, broad experiences that have made you the man you are. The essence of you, the impact you've had - none of that can be diminished by hospice care. In or out of hospice, you are in our hearts.

Sent by DaD | 6:18 PM ET | 07-15-2008

Dear Leroy and Laurie,

My strong advice is do it NOW! We waited with my husband, in part because he was taking Iressa and hospice wouldn't start until he stopped any life prolonging drugs (not that it worked), and in part because we didn't want to admit that the end was near. The final slide happened quickly and everything hospice provided was a day too late - by the time we got a walker, he needed a wheelchair; when we got a commode he needed a bedpan - you get the idea. Had we gotten into the system, with a single nurse or nurse team, they would have been better able to assess his needs. You may be like Art Buchwald and check out of hospice, or you may not. As you know, nothing is predictable in Cancer World. I am so sorry that you are facing these decisions.

Sent by Denise | 6:40 PM ET | 07-15-2008

Go for it. Hospice can last for a loooong time.....And you will have a new perspective to write about.
I don't know how I would have managed without hospice during my mother and mother-in-law's cancer.
Both of you are in my thoughts and prayers.

Sent by luba | 6:43 PM ET | 07-15-2008

Leroy--I want to thank you for initiating this discussion, and I also want to thank everyone who has participated. Because of the thoughtful comments here I am better equipped to initiate this discussion with my mother who has stage IV lung cancer. Because of the experiences shared here, I will do it sooner rather than later in an effort to help her have as many good days as possible.

Sent by Susan | 6:51 PM ET | 07-15-2008

Hi Leroy and Laurie,
I have lost two of my best friends to cancer in the last 4 years. Both died at home and were in hospice care. Hospice is great. You won't be sorry you called.

Sent by Sue Nichol | 6:56 PM ET | 07-15-2008

Be well, walk in what peace you and Laurie can find.
Love.
Sandra Yudilevich

Sent by Sandra Yudilevich | 6:59 PM ET | 07-15-2008

As Karen @ #155 says, most people wait too long. You can always change your mind. Better to have it and not need it than to need it and not have it, Leroy.

Like I said earlier, our home hospice staff was invaluable. And after Terry went into inpatient the last week, they were still there, PLUS all the inpatient hospice staff. The home care people didn't just turn us over and abandon us.

And, like I and others said, this would also relieve a great load on Laurie, the amount of which would be entirely up to you both. I chose to remain the primary IV-starter, shot-giver and dressing-changer (as one of the research "guys in the basement," I know how to do all this stuff, and I chose to). Laurie can say to them, "You do all the procedural stuff, all the dirty work, because I just want to spend time with Leroy" and they'll be OK with that. Laurie needn't ever even touch a band-aid if she doesn't want to. It just happened that this was my field, and I wanted to be the one to provide the primary care. I'm glad I did.

Sent by Bruce | 6:59 PM ET | 07-15-2008

Dear Leroy,
Although I read your blog several times a week, I have never posted a comment before. Your strength and courage are amazing!! When you are ready for hospice, they are an excellent service for both patient and family. They helped me tremendously during my sister's illness three years ago. Whatever your decision know that you have allies out there who are praying for you.

Sent by Eve in San Diego | 7:02 PM ET | 07-15-2008

Leroy,
When my husband was in rehab following a lengthy stay in the hospital, the physical therapist suggested I contact hospice and I guess the look on my face led him to explain hospice prepares you for the end of life no matter how far away you think it is. Fortunately we haven't needed to do that and I don't know if and when the time comes if he will be accepting of the idea or not. For you and Laurie it will be a huge decision that you will make together. As you know, knowledge is power. God bless.

Sent by Kathie | 7:21 PM ET | 07-15-2008

Ask your doctor for a "Palliative Care" consult- that means a hospice nurse comes out to meet you and makes recommendations for pain management to your own doctor without you having to commit to hospice yet.

Sent by Barbara | 7:35 PM ET | 07-15-2008

Leroy and Laurie -- You are in my prayers and in my heart. Leroy I watched my dad battle and I can only say you are such a courageous wonderful man and the world needs more like you. I wish you peace and comfort however you can get it you deserve that.

Laurie I know exactly where you are and it is hard but it is definitely worth it and knowing that you are there will not only provide Leroy peace and love at this time it will also provide you with it to sustain the future -- it is hard to believe that but hopefully you will find out along time from now. That is what has and still gets me through some of my darkest days.

I can only speak from my experience but would like to share in hopes to ease the stress of making this decision. I had only WISHED I called hospice earlier. My dad entered hospice and the next day he passed away. He to, thought it was giving up. My dad's oncologist along with my husband and me tried to persuade him not to feel this way but he felt how he felt and that was his right and it was his decision to make and I respected that.

In July 07 we were told the chemo was not working anymore and there was nothing left. My dad's oncologist was great and for awhile we were able to keep him comfortable in his own home with Fentanyl Transdermal patches for the lung cancer, vicodin for in between pain and steroids for the spread to the brain. Then 1 1/2 months later he was not steady on his feet and had trouble getting up that is when he agreed to come home with me. He moved in on a Tuesday and my husband and I cared for him and gave him meds around the clock. It was such a stressful time but I would not have had it differently. He was around alot of love with us and his two grandchildren that loved him dearly. Just 4 days into moving in he could no longer even keep the pills down and the steroids were important for the brain Mets...he complained of such headaches I could not stand it anymore I told him I had to call hospice I could not watch the suffering anymore I could not help him anymore I was so helpless. I did it for as long as I could but now I need help he said OK honey girl and those were his last words. I had kept the hospice information from our July meeting and called on Sunday morning at 7am and a nurse was here 1 hour later and then arrived a hospital bed, bed side toilet, oxygen and a whole bunch of liquid meds by 2 pm that afternoon. We were lucky that we found comfort and when it came his time the hospice nurse is who eased my fears, who told him the time was nearing, who bathed my father and cleaned him while unconscious but I am sure he enjoyed it. They are who sent the Chaplin they just took care of everything with compassion, caring, calmness. A calmness that I was starting to lose. They cared about us and wanted to know what he was like and cared about him. I had only wished I had called them sooner for the extra help the last few months. They were great! They truly are angels!!! They came to my home and my father was with us with love with peace with comfort until the very end. As hard as it was they were able to provide comfort and pain relief when we no longer could with what we had. They gave us quality time even if it was for only 1 1/2 days it was quality --- with no more pain. They helped me help him we did it together. They gave me the strength to keep going they held me up when I needed it. Leroy this is ultimately your decision and not an easy one to make but for pain relief and tons of other comforts it will truly be a relief for you and Laurie. It will give you more quality time together now! God bless you -- both of you will always be in mind and heart! I now pray for you for peace, comfort and pain free days. You deserve this now! I love you guys and I am there in spirit. Sincerely, your forever friend in Illinois, Cori Swanson

Sent by Cori Swanson | 7:39 PM ET | 07-15-2008

The question is "will hospice hasten your death"? Will it make dying harder for you? Will it make your dying harder for your loved ones? I think you know the answer.

Sent by Russ | 7:59 PM ET | 07-15-2008

I have nothing to add that hasn't been said by people far more qualified than I to give advice on this subject. But as I read through the comments today, I was overwhelmed by how much you are loved, Leroy.

One question: Could you do hospice in Maui?

Sent by K. Ives, Duluth, MN | 8:18 PM ET | 07-15-2008

Hospice is about living and living fully. Until our last breath is exhaled we are still living.
The Hospice workers are there to provide you and your family with the care, support and comfort that you need so that you can live in dignity until you breathe your last on this plane.
As a nurse I have always found that those who are "dying" are actually living more fully than those who think that they have all the time in the world.
God bless.

Sent by Syndi Holmes | 8:21 PM ET | 07-15-2008

not that it's needed, but i have to put in my two cents in favor of calling hospice. my family's experience was very much enriched and helped.

Sent by crow | 8:26 PM ET | 07-15-2008

Leroy & Laurie,

Know that we support you no matter what your decision may be.

Sent by Marie in Minneapolis | 8:41 PM ET | 07-15-2008

Dear Leroy and Laurie, Cancer presents us with such monumental decisions to make. Some can be made in time, and some must be made in a moment. Listen to your feelings, your heart, and your body. You will make this decision when it is right for you. You are both in my thoughts....

Sent by Linda | 8:44 PM ET | 07-15-2008

All the advice today sounds one-sided, doesn't it?...but it's all true. My experience with hospice is that it did give us the gift of QUALITY time with Dad. And we are ever so grateful for that.

Sent by Alison | 8:46 PM ET | 07-15-2008

echoing "karen | 5:42 pm", and so many others here. many people wait to avail themselves of hospice care until long after it has become clear that it would make their lives so much easier.

you are right. it is hard to think about hospice -- a part of that is certainly because treatment becomes so totally a part of one's life. but it also seems to demand that one predict the future; and that isn't fair or reasonable.

the thing is. you don't have to predict the future, or even try. because you can change your mind about hospice at any time. if you hear of a clinical trial, or a new treatment, you can back out of hospice and start active treatment again. and you can re-commence hospice care if you find along the road that treatment is diminishing, rather than improving, your quality of life.

i can state frankly that when our sweet father was ill, my sisters and i might well not have survived without hospice. i can also say that i absolutely do not feel that hospice is a fine thing 'for other people'. i know for a fact that it will be the precise, perfect thing for me too, should the day come for me to walk this path.

no one knows for sure what the hereafter holds in store, or when exactly one will meet with it; but in hospice there is still the occasional adult beverage to be enjoyed.

sleep on it. i wish you good rest.

Sent by mary | 8:57 PM ET | 07-15-2008

Dear Leroy:

It is a fact of Western medical care, especially in the U.S., that one of our biggest issues is the undertreatment of pain. While we have learned that pain is a distinct treatable condition which should be treated for optimal health, our cultural considerations have gotten in the way of treatment. Though we know that chronic pain, itself, worsens patient progress, we threaten doctors with punishment for "over-prescribing", and patients often feel bad or that they are "guilty" of something if they "give in" to pain and take medicine for it. PLEASE, for your own sake and that of your wife and family -- don't do this. It serves absolutely no useful purpose whatsoever!!! In fact, it will actually worsen your condition and probably shorten your life. Take the help, get the pain management. If you have chronic, unrelieved pain, it's time!! As others have pointed out, you can always "fail" hospice by outliving their timeframes. Might as well be comfortable doing it.

Best,

Dawn

Sent by Dawn Whitehead | 9:13 PM ET | 07-15-2008

Looks like the nod is for you to contact hospice. I just read a good article about it and one of the main points is that you will get to know the new medical team before dropping the old one. The transition for you and your family will be a lot smoother and supportive than an abrupt change. Go with it.

Sent by Lisa | 9:26 PM ET | 07-15-2008

Dear Leroy and Laurie,

I agree with talking to Hospice.

I was inexperienced, and listened to my Grandfather, who convinced me to wait too long. He equated Hospice with nursing homes and dying. He wanted to die comfortably at home. By the time I insisted on Hospice, with the help of his family doctor, it was too late.

The people from our Hospice were wonderful even though things came to an end the weekend before his Monday morning initial evaluation. They came and were there for us. In that short time, I learned how much they could have done to make him so much more comfortable than I was able to. (He was in constant pain, on medications, had great difficulty eating as a result of a stroke, and as a result weakened progressively over years.) I also learned how much of a difference that help would have made for my Grandmother and myself as we navigated our way through uncharted territory. Having people involved with our situation who had experience and insights for how to manage the logistics of caregiving and all of the details that come up, would have meant so much less trial and error on our part and a much better quality of life for my Grandfather.

Talking to Hospice can only be a good thing. It can't hurt. It can only help.

Thoughts and prayers for both of you.

Sent by Lilly T | 9:28 PM ET | 07-15-2008

When dad went on hospice, the companion he lived with told me I was hastening his death by signing him into the program, then she accused my brother of trying to kill dad by supporting the hospice decision. This, from a woman who was/is a registered nurse. It was (and is) beyond my comprehension, and I think she had mental problems evidenced by her position. Yet it was crushing to have to stand in front of such ignorance. Hospice was a blessing for dad and this family. I volunteered for hospice for almost 3 years at one time in my life, and knew the positive impact it has for so many. I echo what I heard so often as a volunteer, "I wish I called sooner." Dad had the choice to leave the hospice program any time. So do you. I just asked him to give it a try, and see. Its just another tool in the tool box to help you and your loved ones. A huge wave of relief came over me when dad went on the program. His pain was managed better, and we had people who really knew what they were doing supporting him and us. It made a difference, and could have done even more if only.... If only they had become involved sooner. If only. If only. If only. Damn. If only.

Sent by jen | 9:30 PM ET | 07-15-2008

When I read this entry, I too wanted to jump in with advice. However, after reading all of these comments, I couldn't add more. We had in-home hospice care 30 years ago when hospice wasn't much more than a concept. My husband wished to end his days at home and hospice care made that possible. What I am left to write is that I don't know that this is about offering advice. What moves me so much is the poignancy of every moment at this stage of the illness. It forces all of us to face the fact that there is no going back in life. My own experience left me profoundly changed in how I faced my own life--on the edge of that unyielding poignancy that is forced by every experience, every question and every decision. It takes much courage to find language for such moments as these. Thank you for your courageous commitment to your readers in finding expression for these such intimate and poignant moments you now experience.

Sent by Hanna | 9:48 PM ET | 07-15-2008

I would call Hospice they are like angeles they are there to help you make your life easier. If you get better you can always discontinue it. They are very special people who do this. You are an incredable person, and I can see how much you have touched peoples lives by sharing your experiance that you are going through. You have helped many people. God Bless You.

Sent by Sandy Patterson | 10:28 PM ET | 07-15-2008

Don't do it. At least not yet. The people there are well meaning, but only go there when you're ready to give up raging against the dying the light. They're going to help put you gently to sleep -- so make sure that's what you want.

Thank you for sharing your experience with us. You have done something important for others -- and what more could we want to have done? May the Lord bless you and keep you. May the Lord lift up his countenance upon you, and give you peace.

Sent by Brenda Dixon | 10:28 PM ET | 07-15-2008

Leroy and Laurie,
I can't and wouldn't make your decision for you, but I can speak of one family's experience.

My only regret after my husband's long illness and death is that we put off hospice care. I guess we thought it would signal that we had surrendered to the enemy, and how could we do that?

Those final days/weeks/months could have been so much more gentle. Warfare is necessary sometimes, but it is not the purpose of life.

Live. Love. Smile. Rest.

I pray for you.

Sent by Jane | 10:35 PM ET | 07-15-2008

Yes, hospice is a big step. But it doesn't mean you are giving up. Hospice will lift you and Laurie up physically, emotionally and spiritually.

Sent by Sandra | 10:39 PM ET | 07-15-2008

Dear Leroy and Laurie,
I've been reading your posts for over a year and just wanted to let you know that my thoughts and prayers are with you both.

I called hospice while my Mom was in the last stages of Alzheimers. She passed away before they could help her. But a very kind woman who I had never met before came and spent an hour with me, helping me get ready to release her. Therefore helping her to pass to the other side.

There is no right or wrong way. You just do the best you can at the time.

Take care.

Sent by Sally | 10:44 PM ET | 07-15-2008

My mother is in Hospice and has been for 9 months. It is and was one of the best things I ever did for her, maybe even the best. It was a heart wrenching decision at the time but they explained to me that it didn't mean she would die. Rather, it meant that her journey would be easier. So all these months later she is much more comfortable and cared for. We are lucky to have this option. Not only does hospice help my mother, they also help the whole family, which was a surprise for me. My heart is with you and yours. I wish you well, my friend.

Sent by Hilary Platt | 11:01 PM ET | 07-15-2008

Whatever your decision, Leroy and Laurie, we're with you all the way. Hugs

Sent by Paulette | 11:43 PM ET | 07-15-2008

Leroy, Trust Your "Inner Wisdom" on this one. Maybe you can think of hospice like another "tool" or "aid" to help you make life a little easier now -and you deserve that. Whatever and whenever you decide, I wish you all the best...free from worry over your decision and a lot less pain. Praying for you from Chicago.

Sent by Beth | 12:06 AM ET | 07-16-2008

Leroy, while I can't tell you how to make your decision, I can tell you how hospice helped my family after my father had battled stage IV cancer of the esophagus for a year.

The hospice nurse allowed my mother to have a much needed break. My father was given pain medication to make him more comfortable, and best of all for the extended family and my father, he was allowed to remain at home for his final days. Hospice brought in a hospital bed, which made it easier for all of us to provide care for my father.

They provided us with so much information and gave us answers to all our questiohs which made it easier for us to accept what was going to happen each step of the way. Unfortunately in his case, like many others who posted, he waited too long to call hospice and only lived two weeks after hospice became involved. I do not believe it had anything to do with accepting hospice care.

Only you and Laurie can make the choice. I do not believe that it means you are giving up. Leroy, you have shown such courage all along this journey and I admire you very much. May God be with you as you make this difficult decision.

Karen Thomas, Forest Grove, Oregon

Sent by Karen | 1:06 AM ET | 07-16-2008

Dear Leroy and Laurie,
Please consider hospice...It ciuld alleviate some of your pain, Leroy (think "morphine-lite") and would permit Laurie to help you in ways you would like to be helped (foot rubs and head rubs come to mind)...

Leroy, hospice would help you and Laurie -- you are NOT giving up, you are NOT saying "the end is near" -- by lowering your pain level, you will be lengthening your life and making what you have with Laurie and family and buds much more meaningful...

Sent by Victoria Ferreira | 1:40 AM ET | 07-16-2008

Hospice is full of wonderful and supportive people who can only be helpful...one more way to expand your care system... the leap to say yes to the offer is enormous, but I don't think you would regret it... anyway, in your heart you know what to do and when...

Sent by Joan | 3:23 AM ET | 07-16-2008

I am a hospice and palliative care volunteer, because I believe in the comfort and dignity of a human being in his/her final months/days/hours of life.

I use my training, experience, and intuition to help the client and family with physical tasks or emotional support.

I bear witness to the unselfish, loving dedication of family and friends who are truly present for each other.

I have been witness to my dying friends' courageous struggle, and sometimes serene surrender, and other times unyielding resignation toward the final breath.

My work is meaningful and invaluable; it is life nurturing and breath taking work.

I believe that the most important element in your decision Leroy, is the people you choose to have around you and your loved ones.

May you have many peaceful, painless moments on your journey.

Caroline/San Francisco, California
Hospice and Palliative Care Volunteer
Cancer Survivor, 5 years

Sent by Caroline/San Francisco, California | 3:30 AM ET | 07-16-2008

Leroy, it is such a hard question. Before my husband passed away we talked about getting hospice involved but just kept putting it off. Unfortunately by the time they got involved with us my husband had allready been taken to the hospital and passed away the next day. I am sad now that they were not involved with us. Some of the questions I had they could have possably helped to answer for me. I wish my husband could have talked to them, we just continued to drag our feet as time drew very near. I guess we just didn't want to give up our abilty to do as we wished and also accept that we were dealing with a very fragile situation.

I will continue to pray for strength for you and Laurie. You both are very precious. There really is no answer to your question. Do what ever feels right within. It will be ok.

Sent by dorothy in oregon | 3:47 AM ET | 07-16-2008

I remember when we - my mother, my sister and I - decided it was time for Hospice. Although I work in the field of medicine, I really hadn't thought through all that it means to accept Hospice. I don't mind admitting to my ignorance/stupidity if if can shed some light for someone else: we never thought through what it meant to WITHDRAW ALL TREATMENT. We had just changed mom's insurance so it would cover an expensive medication to treat her multiple myeloma. But going on hospice meant NOT using that drug anymore. And the other drug that was keeping her from going over the edge with congestive heart failure. Although it was the appropriate thing to do at that point, I really hadn't understood that before our big decision. And so, she declined rapidly and was gone in a month. I think that all happened the way it should have been; I only regret that I really didn't understand my decision when I made it. Larry, you probably have thought this one through - but just in case you are as dumb as me, I want to share it with you. My mother was 94 and it was time for her to go, but I am still embarrassed that I didn't think how fast she would go after making that decision. I wish you well, whatever that means to you today. I know I will truly miss you when you are gone.

Sent by Sara Chan | 3:50 AM ET | 07-16-2008

Hi Leroy and Laurie,

When I read your post this morning I cried, not just for you but for me too. I'm a Stage IV colon cancer fighter on the same path you're on only a year or two behind you. I know that I'll have to make the decision some day and I hope I can make the right one at the right time. I'm in no pain from the cancer now, other than having to wait until next week to hear the results of my 13th CT scan but I did have some pain yesterday that made me think. I spent a few hours in the ER with a bad UTI and I'm getting to the point where I don't want to tolerate pain. My only experiences with Hospice care were at distance. My wife brought her father back to his home from the hospital with just a few weeks to live. With Hospice care he lived another 18 months in comfort. He got to see his grandson grow and visit with his friends and neighbors. His caregivers were fantastic. My wife still keeps in touch with his nurse; it was like she became a part of our extended family. Of three of my friends that were on the same path ahead of me one waited too long and endured too much pain. Two did take advantage of Hospice care and it was a great comfort to them and their loved ones. I don't know what I'll do so I won't try to suggest what you should do. I hope you make the right choice for you and Laurie. I also hope to keep reading your blog for a long time.

Walt

Sent by Walt from Los Angeles | 4:29 AM ET | 07-16-2008

Leroy,

I've been following your blog for awhile, but this is my first post.

My Mom passed away from non-smoker's lung cancer on March 25, 2005. She was 54. Like the Sievers, my family struggled with the hospice decision. Eventually, we settled on having nurses come to the house in February, a bit more than a month before the end. In retrospect, it was a wonderful decision - one we likely should have made weeks earlier.

What we found was that the hospice nurses are not there to shuffle you off. Instead, they result in immensely improving the remaining life of the sick and, by proxy, the lives of the patient's loved ones. In fact, I'm confident that hospice gave my Mom a couple more weeks of awake and coherent moments for us to spend with her - a relatively huge amount of time.

The hospice nurses did everything - IV drugs, nutrition, help with mobility, and companionship for the hours we had to steal away. Towards the very end, they would brush her teeth, wash her hair, and help her with the bathroom - things that while scary to lose ownership of, she was incredibly grateful for.

The nurses became our friends. They came to her memorial service. One year later, they were one of the relative few who marked the anniversary with a "thinking of you" card.

One of the most important things hospice left us was a log book, detailing very simple things like waking up, falling asleep, getting a dose or two of some magic drug, people who came to visit, and, most importantly, things she would say through the haze of departing. In years gone by, looking at that log book is like looking at a thousand photos of those last days, an affirmation that she was in fact here and alive.

By chance, did you follow the passing of Art Buchwald in January 2007? If you look back, you'll see that he actually checked in to a hospice facility in February 2006. At the time, I thought he must be near the end. However, what we found out was that this "early" decision was what allowed him to grace us with a few more columns, a few more interviews, and a few more laughs.

Good luck with your choice. I hope my commentary is not out of line in any way. I'll sending good thoughts the way of you and your family.

Best regards,
Ben Traverse

Sent by Ben Traverse | 9:17 AM ET | 07-16-2008

Questions to ask:
Would beginning hospice care eliminate any medical choices of treatment?
Would hospice make your coordination and delivery of care easier/better?
What is the negative about starting with hospice care?
What is the negative about waiting?

Bet you didn't know these were life's 'big questions'.

Thinking of you and wishing the best for you.

Sent by Leslie | 12:53 PM ET | 07-16-2008

Leroy
i look forward to your open and honest writings. it saddens me that you are to the point where you need to make a hospice decision. i trust and pray that you know the lord jesus christ as your own personal savior. he will guide you through.

Sent by kathy | 5:43 PM ET | 07-16-2008

On a practical note, once you decide you want hospice it may not start right away. We were referred last Saturday in the hospital, and hopefully tomorrow [Thursday] the team will come out to our house. They have their processes and their paperwork. So I suggest you start that process. If you don't need specific services then you don't get them, but at least you will be on their caseload. I wish the hospice nurse had been with us today, and on Saturday I didn't think waiting would be that big a deal, but it is. I wish you the best, Leroy.

Sent by sara in california | 9:15 PM ET | 07-16-2008

Dear Leroy,

For both of my parents, I waited too long to call for Hospice's help and support. My mother died one half hour after the Hospice nurse arrived. I know that she waited because she did not want to leave when I was alone in the house. I thank her so much for that small gift. The reason we waited so long was because to call Hospice was to acknowledge that there were no other options, that death was imminent. But ignoring the 'big elephant' that was sitting in the room with us stole from us some time that we could have spent doing other equally good and important things.

I have been reading your blog for over a year now. Sometimes, I have skipped as long as a month or two. You don't have that choice. You can't take a vacation, even briefly, from the next steps in your life and death. I know that sounds a little harsh, but Leroy, every one of us will take this same walk. Most will not be as strong as you have been.

Hospice is so much more than pain relief. The support these earthly angels bring is not only to you, but also to your loved ones. Let some help.

Sent by Cynthia Jenkins | 7:01 PM ET | 07-17-2008

Leroy and Laurie - for those who need a short refresher course about me - I lost Paul last October to multiple myeloma, and I am also a breast cancer survivor. I don't remember if I ever mentioned in a post before that I've got a Master's degree in Nursing, and have been an RN for over 20 years, mainly working with home health. I never called Hospice for Paul, because I thought I could take care of everything myself that he needed; physically, I was right. I had our bed modified so that he could pull himself up just fine, but it still looked like "our bed"; I had our bathroom modified (the tub removed and a walk-in shower put in it's place with shelves over on one side). I had grab-bars put up everywhere I thought they would be necessary. I bought chairs with arms that were heavy enough to not slip when he sat down in the dining area. I put "risers" underneath the chairs (his recliner) so that he could sit down and get up easier. I had the toilet replaced and got a handicapped one that was easier for him to use. I bought a pedestal sink so that he could sit while he shaved. I could go on, but I think you got the idea. I really did know what I was doing, but what I deprived him of was someone other than me to talk with about what was going on. I found out that at the end, he was getting very tired, and didn't want to tell me because he didn't want to disappoint me. Nothing could have been farther from the truth, but it was something that he just couldn't bear to tell me. For that reason alone, along with perhaps helping me with some other issues, I wish I had called them. Even if we had decided to ask them to leave at some point in time. During my whole ordeal, that is really my only regret. Take what you can from my advice, and make your own good decision - I know you will anyway. For people I've never met before, I spend an awful lot of time praying for you - both of you - because I know that's what you need the most.

Jeanette Carney

Sent by Jeanette Carney | 9:43 AM ET | 07-19-2008

Leroy,
I believe you are so fortunate to have this time and awareness to love and take care of things. So many people leave unexpectedly without this ability to say what needs to be said or do what needs to be done. That's a blessing cancer can give us. Most of the time we get a bit of time, some more than others. My grandpa was 92 and had congestive heart failure. His doc gave him less than 6 months. Gramps signed up for hospice and out lived it by more than a year. He loved the warm, caring people, how his pain was properly monitored. Too many people wait too long. I see it as just another group of people to join your cancer fighting team. They are there for your family as well. What a wonderful resource to have!

Sent by Lisa | 8:41 PM ET | 07-26-2008