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. T