Leroy, you are doing your homework. Glad to hear you had a visiting nurse in! I agree with her take on hospice. If and when hospice is indicated for you, you will know it.

Take it day by day. And, have a good one today!

Sent by Marilyn | 7:24 AM ET | 07-16-2008

Good morning Leroy,
Just read so many of the answers to your question yesterday. If love and caring made you well, you would be out the door and on the way to some place exciting to report from ! Nobody CAN TELL YOU WHAT TO DO - and I am sure that you are opinionated enough to take all the advice and positive words about hospice in hand and make up your own mind!
Just take care, do what you can and much much love to both you and Laurie.
Jan

Sent by Janice Goldberg White | 7:24 AM ET | 07-16-2008

That is a very hard decision to make.
However that being said, I am sure when the time "feels" right, you will know. Until then try not to fret about it. I know, so easy to say. It seems that you have many people there, to help you during this very difficult time, when decisions need to be made.
Prayers,
Wanda Amorose

Sent by Wanda Amorose | 7:35 AM ET | 07-16-2008

Leroy,

Ahh, I think I see. As I said yesterday, you'll know when you're ready. Your doctors and 99.9% of the readers who responded yesterday all think it's a good idea. The fact you brought it up as a topic shows somewhere you think it's a good idea. I see a little definativeness there.

My question to you is what is holding you back?

Sent by Teri Thomas | 7:40 AM ET | 07-16-2008

Dear Leroy,

I am not an expert on life, but I have found that when you cannot make a decision, it IS the decision. I would say you are not ready for hospice--today. So put it on the back burner and enjoy today. I really believe you will know when it is right for you. And whenever you decide, they will be there for you.

Keeping you in my prayers as always.

Sent by Mary C. | 7:42 AM ET | 07-16-2008

I guess whenever I have a decision to make and the answer doesn't come to me I do nothing. The answer will come.

Hugs to you both.

Sent by Lori | 7:43 AM ET | 07-16-2008

So you do not yet feel comfortable with hospice. What do you want now, Leroy? Within the bounds of reality, how do you want things to go? And how about Laurie? My wife and I made a list shortly after she stopped treatment of what we thought we could realistically do with the final months of her life that we would enjoy. The best thing- a weekend away at our lake cabin. It was a lot of work to get all the drugs and assistance equipment there, but we even managed to sit together on the dock, our feet in the water. No discussions of anything other than the weekend.

I hope you find what you and Laurie would enjoy. Too much medical stuff and big decisions wears you down.

Sent by alex | 7:45 AM ET | 07-16-2008

Dear Leroy and Laurie,

I read the comments from yesterday, finishing them this morning and yes, we all pretty much said the same thing. And you have a very good point, in your uncertainty. You are traveling a road that we will all travel in our future. The difference is you know what will probably bring the end of the journey and some of us do not.

That first step to allow someone in to assist with care is a big one. There is a part of giving up control that isn't easy and allowing others to care for you in ways we are not used to makes a strong statement in itself.

I rested better knowing my decision to start hospice and have a care giver was the correct thing for dad, my sister (no way could she have done it) and myself (my dad's and my relationship was way too close). You will know when the time is right for you.

Peace to all in this community of support. You both remain close to my heart and in prayers.

Sent by Sue Chap | 7:53 AM ET | 07-16-2008

Dear Leroy,
For my it is obvious that your time for hospice has not arrived yet. I am sure you will know when the right moment for you has came. But you should not think that you are giving in.
As someone wrote some weeks ago "Nothing is decided until the fat lady sings".
Love from Madrid to you and Laurie

Sent by Angela | 7:58 AM ET | 07-16-2008

For the time being, Leroy, you seem to derive all the encourgment and strength you need from this group of friends of yours. You sound like you are still very much in control and THAT is wonderful. Stop worrying about it too much, all the pieces are falling into place. Love you both, have a bright. optimistic day,

Sent by J C R | 8:04 AM ET | 07-16-2008

It takes me a long time to make major decisions (even some minor ones too!). This is one of the biggest you will ever make. It seems that you have made the biggest choice: yes, eventually you want hospice.

It's certainly OK to take time to mull over the start date.

Sent by Liz L. | 8:14 AM ET | 07-16-2008

Leroy just being with the question will provide your answer. Just do what your heart suggests. That was my favorite answer from the Magic 8 - Ball!

Sent by Pat Z. | 8:14 AM ET | 07-16-2008

Hi Leroy,

Have you ever checked out the Magic 8 ball online?? I do on occasion. (I find it by googling it.)

Sounds like you have a good home-care nurse. Hope you have some relief today. Maybe a day where you don't ponder all the serious and stressful decisions you are facing. I'm hoping that you get some sort of a mental break from all of this.

Wish I could think of a good book or movie to recommend. Did you see the movie "Talk To Me"? It made me laugh last summer, when I really needed some humor mixed in with all the serious stuff I was dealing with, healthwise.

Take care, and hope there are some laughs that come your way today.

Heartlight,

Virgie & Kim

Sent by Virgie & Kim | 8:17 AM ET | 07-16-2008

Actually, that answer IS surprising, particularly coming from a former hospice nurse, since you don't have to stay with it if you don't find it helpful. And since you say you're having problems with pain, it's doubly surprising.

Sent by Bruce | 8:19 AM ET | 07-16-2008

The recommendations for hospice yesterday were overwhelming and I agree. The next step in the process is to decide when to get them involved....not such an easy answer even though "early" seems better than "later". With a home-care nurse by your side, it would seem to me that you are ok for now...just my opinion.

Just a question and one with no definitive answer...does the involvement of hospice subtly and sub-consciously signal to one's body that the end is near...mind over matter? While I believe that only God knows when our lives will end, I do ponder this question.

Your life...your choice, Leroy. Only you and Laurie can decide what is best for you as it should be.

Prayers and blessings as always.

Sent by Al Cato | 8:25 AM ET | 07-16-2008

Leroy, I am glad you have a home health nurse coming to check in. That even in itself should make things easier. At least mentaly. I know there were times we were worried about certain things happening that you just couldn't always pick up phone and call the Dr. So at least now you will have someone checking in with you.

As for hospice, a very personal decision. You will make the right one when you inside feel it is right. I am sure you and Laurie must talk about this.

Leroy, try to have a good day. Get outside a bit. My heart is with you both. Carpe Diem.

Sent by dorothy in oregon | 8:35 AM ET | 07-16-2008

And so it is.

Have a great day Leroy. The sun is shining here in Wisconsin.

God bless you.

Judy

Sent by Judy Voller | 8:43 AM ET | 07-16-2008

Dear Leroy,
I wish only the best for you. Take your time making your decision about hospice. My husband decided that he does not want hospice. Fortunately I have my three children as a support group and together we are managing things at home. However, I do know that there may be a time when I will need help. Right now, I am taking one day at a time.

Prayers to you and Laurie. Please hang in there dear friend.

Sent by sasha | 8:45 AM ET | 07-16-2008

Leroy, good for you. As at least one other poster said, if what you need is help with managing pain, bath chairs, and home health aides -- well, get that. I can't tell if you are still undergoing treatment of some sort, or certainly what your insurance allows (that was part of our prob, insurance said that hospice = no more oncology care).

For my husband and me, the prob with the insurance and the hospice org available to us was that it was very geared to near term end of life. As I put it at the time, I wish there'd been two kinds available to us: one for when death is knocking at the door, and another for when death is more cruising the neighborhood. We got the former.

Sent by Teri | 8:47 AM ET | 07-16-2008

Knowing that you have the home health care nurse changes my opinion on hospice. I thought you and Laurie weren't having any outside help and I thought that was too much of a burden on BOTH of you.

Add someone to clean once a week and order your groceries online and hopefully you can continue the status quo for months.

I was worried you weren't getting in home help. A big Duh on my part, it doesn't have to be hospice to be help.

Sent by Robin L. | 9:08 AM ET | 07-16-2008

Wow, i haven't thought about the Magic 8-ball in quite a while. It's a piece of my childhood, along with the Hula Hoop!

You'll know when it's right, Leroy. Thank you so much for sharing your thoughts with us.

Love, Suzanne

Sent by suzanne mitchell | 9:15 AM ET | 07-16-2008

Dear Leroy, I'd say if you are thinking, "Not yet" --then that is your answer friend. "Not yet" it is!
Go somewhere special in your mind today Leroy--whether it is on the white sandy beaches, or on a cool, earthy hiking trail in the mountains. Just go there for a while. ummmmmm

Sent by Linda Lee | 9:19 AM ET | 07-16-2008

OMG, Leroy, I haven't thought about the magic eight ball in years. It's obvious that neither pain nor brain mets has dulled your mind or wit. Thank you for just being you and sharing that you with us.

Blessings,
Kate

Sent by Kate in California | 9:23 AM ET | 07-16-2008

All I can suggest is to not think of hospice care as the beginning of the end. Just think of it as a little more help when you need it.
My daughter in law's little nephew was enrolled in hospice care when he was a little over a year old. It was a blessing for the whole family. Sean is now almost 5. Consider taking the extra help. What have you got to lose, except pain?

Sent by Nancy Kelly | 9:27 AM ET | 07-16-2008

Leroy is such an excellent writer and person. I have read his blog during his duration of this latest cancer. I like his wit and humor and way of looking at things. Just found out my dearest friend is now in the 'cancer' family and your blog will help me with his fight while going through chemo and how to help his 'life-giver', too. Fondly,

Sent by jane culver | 9:28 AM ET | 07-16-2008

Hello, Leroy,

I'm wondering what the down side is to starting hospice, for you.

As always, wishing wellness to you and Laurie.

Sent by M Wms. | 9:29 AM ET | 07-16-2008

OK, leaving cancer behind in this note! Are you a person that gets early and enjoys the sunrise in whatever part of the world are/were? I wish I did that more often. Such marvelous beauty to be enjoyed for free! I want to commit to doing this. What a gift every sunrise is.

Sent by Susan | 9:33 AM ET | 07-16-2008

Hello Leroy,

Obviously this is not going to be an easy choice. Just balance your Doctors suggestions and what your family and heart tell you. What ever you choose it will be the right decision for you.
You are in all of our prayers.

Sent by Brit | 9:37 AM ET | 07-16-2008

I had forgotten about 8 balls. (LOL) that is as good as anything else these days I see coming my way........ I love it!

Sent by Diane | 9:41 AM ET | 07-16-2008

Leroy,
Take the drugs. If you don't like them, quit them.
Joseph Lampert

Sent by Joseph Lampert | 9:46 AM ET | 07-16-2008

You are exactly right. You will know when it is the right time for you. My Granddaughter, she was a grand 20 year old, made the decision. She liked staying in the hospital because she loved the cancer nurses. She felt comfortable. The doctors wanted her out and talked her into going to palative care facilities, beautiful, yes. But, within hours they almost let her die. We immediately put her back in the hospital by insistance. She made the decision at that time take me home and get hospice. We did.

Keep writing, we will have no one without you. You are important to let the world know. Few people understand like you. I can talk all I want but what I say goes in one ear and out the other. Simply, most do not understand. God Bless you. You mean so much to everyone.

Sent by Mavis | 9:47 AM ET | 07-16-2008

Hi Leroy, I just wanted to encourage you to reconsider HOSPICE care....Unfortunately many people assume that Hospice is the last hope, that it really signals the end of life. While it is true that hospice cares for those whose illness has reached a point where their life expectancy is limited, Hospice is SO MUCH MORE!!! And the earlier they are called in the better...because they do have so much to offer. While Hospice does provide pain and symptom management to the patient, Hospice also offers equipment such as hospital beds, medications to control symptoms, nursing assistants to help with personal care, volunteers who can run errands, spend time with you to allow primary care giver the chance to take a break, social workers to assist with insurance issues, etc., chaplains to provide spiritual comfort if needed. RN's are on call 24-7 and always available to you and your family. All equipment, visits, medications,services, are at no cost to you. Insurances cover hopsice care, as well as a "Hopsice" benefit through medicare/medicaide. No one is denied Hospice services regardless!!

Another benefit of Hospice is bereavement support. This is offered to the family.

I cannot say enough about the wonderful mission of HOSPICE. They are truly LIFE AFFIRMING!

Peace,

Sent by Debbie Barron | 9:56 AM ET | 07-16-2008

Leroy,

Remember that hospice is not just for you, but also for the people who love you. Are there people in your life who have questions about what is happening to you? Questions about life and death? Questions about how to help you with pain management, mobility, etc.?

It was hard for my family to decide to bring in hospice. I hear about people who were advised to get on hospice services but lived much past the '6 months' expectation. Certainly meeting with hospice won't signal your body or anyone else that you have given up.

Hospice will keep a caring eye on Laurie and the other people who love you as well as helping you more as the time comes. In addition to how they helped us make my Dad more comfortable, I am eternally grateful for the hospice volunteer who looked at my Mom and saw her needs and met them, and made sure we knew how to care for my Mom as well. Little things like "you need someone else to stay the night with you so that you get better rest"; "you are crying a lot today, make sure you drink more water"; even to ask about the family pet, offer to talk to children and grandchildren, and to assure her she was doing a great job as primary caregiver.

Leroy - it won't hurt ANYTHING to start talking to hospice. You seem to want to keep on learning about life. You will be amazed about what you will learn about life as you take this next step.

Sent by Kelley | 9:59 AM ET | 07-16-2008

My first surgeon, a cancer survivor, after my salvo of "manage the problem" questions stopped me and said "you're going to have to let me take care of you". That's pretty much what I've tried to do ever since. I still try to get a handle on things but it's always hard. Too often the deal seems little more than to trade the discomforts we know, and risk it all, for whatever might be behind door #3.

My Doctors are in a tough situation. Do they take another piece of my remaining quality of life with the recommendation of risky treatments & clinical trials or do they just leave me to the despair of palliatively finishing this stage IV shit sandwich. Maybe Mattel could make a Doctor's version of the Magic 8-Ball. It would at least provide some random fate to their Hippocratic conundrums.

If we do what we can to sustain & extend life at stage IV maybe this cancer's final stage will be better know in the future as stage V.

Hold Fast & don't goose your nurse... she has skills....

Don MacLeod

Sent by Don MacLeod | 10:06 AM ET | 07-16-2008

Let God lead the way.

Sent by Maureen | 10:07 AM ET | 07-16-2008

Dear Leroy,

"..everything is holy now.......everything's a miracle."
http://www.youtube.com/watch?v=0yoSd1Va3jQ

peace,

pat

Sent by patricia benson | 10:08 AM ET | 07-16-2008

You may decide you never need hospice. My uncle went into a hospice for 4 days and then decided to go home. It will be there if you need it.
Peace from Rochester

Sent by Sue from Rochester, NY | 10:13 AM ET | 07-16-2008

I have to say that you are walking down a road that I know I'll be walking down at some point too - lots of your friends in this blog as well - and to have you write about your thoughts though it must be very painful, is so helpful and so very very brave.

For me entering Hospice will mean that I acknowledge that I am starting to die. And want help and support with my leaving. Can any of us imagine how incredibly hard it will be to take that step, the finality of it and the loss of control it represents? Yet I've been told by some friends that once the step is taken there is another path opened wide ...of healing and acceptance and calm.
I think whenever you make the call is the right time to make the call whether its tomorrow or next month.
I've been away and just read Laurie's thoughts of the other day. It is wonderful that she is there with you validating who you are, validating your wonderful history as a human being, all the things you were and are.

With thanksgiving for you and all you share with us, Nancy O

Sent by Nancy Oliveri | 10:20 AM ET | 07-16-2008

Hi Leroy,
I am happy you have a home care nurse. I had one for almost a year and a half after my last surgery because I had to give myself IVs for hydration every day. I almost fainted when she told me I had to give myself an IV every day. She was a good teacher and it turned out okay. She helped with many more things than just checking my PIC line and changing the dressing once a week. I think you have made the right decision for you now. You will know when it is time to make the next decision.
I hope the sun is shining where you are. It is here in Rural Ridge, PA.
God bless you.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 10:23 AM ET | 07-16-2008

Leroy and Laurie, Seems to me we are avoiding the bottom line with all this hospice talk. You will know when it is right. Our struggle is, how can we find peace and acceptance when we are being forced to leave the ones we love and the life we love. That triggers separation for one and abdonment for the other. Any help with this out there?

Sent by Elizabeth Sebastian | 10:31 AM ET | 07-16-2008

Hello Leroy AND Laurie...the posts of the past couple of days make me hope that you both are finding moments in every day that make you smile or bring a calm feeling of contentment.

Although it sounds as if Maui is not in the cards and the C&O canal walk is a bit too ambitious, have you been able to look at what there still is to enjoy? Not knowing your level of pain or strength/endurance, I am really hoping there is a way to "get up and get out" if only for a drive that goes somewhere other than to a doctor.

Have a peaceful Wednesday.

Peggy

Sent by Peggy | 10:36 AM ET | 07-16-2008

Leroy and Laurie,
You touch my heart, I send you much energy and warmth to keep you in comfort.
Your sense of humor is always shining through and you give us all understanding.
Thank you for this magnificiant story.
Sondra from Montana

Sent by Sondra Daly | 10:37 AM ET | 07-16-2008

My sister struggled with palliative care too. She chose not to sign up when her doctors suggested it. It came quick and unexpected. She was so sick, no meds, she ended up in the hospital. All the doctors said, "She refused to sign up for palliative care."..>Yeah, we knew that, but thanks for throwing it in her face. It's never too early Leroy, better to have it in place for when you do need it. I know, it was hard for Nicole to come to terms with it, but she should have, it would have saved her A LOT of discomfort, pain..it was awful. Please, sign up Leroy.

Sent by Kristina Murphy | 10:40 AM ET | 07-16-2008

Good Morning Leroy,
I hope today is sunny where you are and I hope it is painfree. Just remember, we all make the decisions we have to when the time is right. Love and prayers.

Sent by Teresa in WV | 10:48 AM ET | 07-16-2008

Hi Leroy:
I understand your dilemma and wish you well as you decide what's best for you. For what it's worth, I am a huge fan of the often-misunderstood hospice care movement. My Dad spent a few months in hospice care and I'll never forget how upbeat and respectful the staff were to our family, especially the 'patient.' This conversation reminds me of a story I heard in a university religion class. The guest speaker was the director of the regional palliative care unit at a local hospital. At this point in time, Elisabeth Kubler-Ross's books were just coming into prominence, so not a whole lot was known among the general public about the nature and value of hospice. The ironically-named Dr. Skeleton told the class a story about a reporter who visited the hospice ward and was very surprised to find such a life-affirming atmosphere. "Doctor, everyone here is talking about life," said the reporter. "Aren't all of these people dying?" Dr. Skeleton said, "Yes, sir, but we don't bury our patients until they're dead!"

Sent by Nancy from Canada | 10:48 AM ET | 07-16-2008

Leroy
I agree with JCR and Sasha and others who feel that when the time is right you will know. Deciding not to do something is just as valid a decision as going ahead. You are our hero, Leroy, and we are with you every step of the way.
Fondest love to you and Laurie.

Sent by Tina from Alton, IL | 10:51 AM ET | 07-16-2008

Interesting question from Al Cato. Maybe just the slightest shift in intensity in the body/mind.

One thing that a nurse said yesterday haunts me. 'Hospice is good when it is decided that there will be no more treatment against the cancer itself.' Another person said when there are 'no more tricks to pull out of the hat.' So, Leroy, what do your drs. say? Are there more treatment options for you?

Pat shied away from hospice because he didn't want to give up the great oncology team he had for 22 months. There is something to be said for being comfortable with the people who surround you. We also were really lucky in that Pat was pretty independent until the last six weeks of his life.

I think for now you can put it on the back shelf, Leroy. Just putting the question out there yesterday was a great idea.

I forgot about my Magic 8 ball...

Sent by Kathy B. | 10:53 AM ET | 07-16-2008

************ WE LOVE YOU LEROY*****

Liz Z

Sent by liz Zimmerman | 11:00 AM ET | 07-16-2008

dear leroy and laurie
screw hospice care that is the end fight don`t give up yet there may be more options out there for you. sorry to be so blunt but theres a great clinical trial they are trying to enroll people in right now at wake forest university baptist medical center. you should look it to it look at all you have been thru already seems a shame to come back from the brink of death from a infection to let the cancer do you in fight leroy no hospice.

Sent by kim parris | 11:00 AM ET | 07-16-2008

Leroy, Years ago when I was in therapy, my therapist gave me a great piece of advice.
When you don't know what to do, do nothing at all." It will be revealed to you in your unique situation when it is "time." Readiness is everything.

Blessings.

Sent by Diana Kitch | 11:04 AM ET | 07-16-2008

One of the things I appreciate about you - you toss out incredibly personal and difficult questions; you allow the entire population respond, pro or con and yet you are undeniably still in control of your own life and are still making your own choices. I applaud the courage your exhibit by doing both so well!

Sent by kathryn | 11:10 AM ET | 07-16-2008

i am so glad that you are so willing to share and discuss this entire process , the big taboo subject of death, dying, and life. no one talk about it..WHY??? that was reason why i have followed you throughout my journey with cancer ..you arn't afraid to share....you gave me courage when i needed it. you gave me comfort in knowing that i was not alone. you allowed me to share intimate feelings that i didn't want to share with my loving husband because i didn't want him to worry anymore than he already was. and now...as the circle of life goes ..you are here sharing the thoughts that all of us have whether or not we have cancer or not. my prayers are with you everyday and always.

Sent by marianne dalton | 11:18 AM ET | 07-16-2008

I feel exactly like several others do, when in doubt, do nothing. When it's time, you'll know it. What are your doctor's doing for you now? May you find peace when you need it most.

Sent by Ruth White | 12:20 PM ET | 07-16-2008

Dude, it's sounding like you're more conflicted today than you were yesterday about the decision. Maybe it would be helpful if you just forgot you're a journalist for a minute (stop asking so many questions!) and sat back, blocked out all the outside noise and listened to what your heart and soul are telling you. Not to get all Yoda on you, but inside, you know the answer. You just have to have the confidence to face it.

I wish you peace.

Sent by Joyce in FL | 12:21 PM ET | 07-16-2008

Dude, you'll know when it's time! Accepting hospice would probably feel like throwing in the towel to you, and you're not ready to do that. My sister was still asking what her next treatment option was the day she died. Her example of courage and fight stays with me to this day. Did she seem foolish for her hope? Hell no!

It is in vogue to gently accept death now, and maybe that's right.

"Do not go gentle into that good night" as my friend Dylan said (no, not Bob).

Peggy C.

Sent by Peggy Carey | 12:28 PM ET | 07-16-2008

Good answer from your nurse!! Just take one day at a time and make a dicision when the time comes. Magic 8 ball? I have to check that. Have a pain free and comfortable day today.
Peace be with you Leroy and Laurie too.
Marelly

Sent by Marelly | 12:42 PM ET | 07-16-2008

"And when the night is cloudy there is still a light that shines on me
Shine until tomorrow, let it be
I wake up to the sound of music,
Mother Mary comforts me
Speaking words of wisdom, let it be
Let it be, let it be, let it be, yeah, let it be There will be an answer, let it be "

Sent by beth | 12:46 PM ET | 07-16-2008

Dear Leroy & Laurie,
I am so sorry you are going through such a difficult time. I know Hospice has certain negative connotations. However, when my mother suffered from heart disease I found that Hospice brought such peace to the situation. They explained that if you find you don't need it any longer - that is fine. If you need it for longer than the original plan - that is fine. We found that it freed us from certain tasks and gave us the opportunity to just enjoy our time together.
Having said that, like everything else in life, it has to be right for you.
God bless you in this journey.
Peace to you,
Mary

Sent by Mary | 12:49 PM ET | 07-16-2008

Leroy,
It seems to me that "hospice" is also a style and level of care. You don't necessarily need a formal agreement with a Hospice Agency to get the benefits of this concept. If you have a home health nurse and a case/social worker (possibly from your hospital) you have already set up the basics of your own private in-home hospice environment. This has the possible advantage of avoiding the restrictions of official Hospice regulations regarding treatment, etc. as well as the apparent discomfort some have with the idea of Hospice Care.
As always, our thoughts are with you and Laurie.

Sent by Gene Koeneman | 12:51 PM ET | 07-16-2008

Hi Leroy,
Trying to decide when hospice is appropriate doesn't have to be a difficult question. Call hospice in your area, set up an appointment, and ask them for the information you are seeking. That way, you will have first hand information. Go to the source.

Margaret

Sent by Margaret Fowler | 1:17 PM ET | 07-16-2008

Leory, it's fine to decide not to move in the direction of hospice at this time. It is your decision, and if you listen to your gut, you will know if the time is right. Sending you good wishes today. I hope you have some laughs and no-cancer moments with Laurie and your friends and family. That means so much.

Sent by annie | 1:24 PM ET | 07-16-2008

Leroy, I have a hunch you will know when the time is right. Like so many things in life, our natural instincts seem to kick in just when you need them.

Sent by Marilyn Trujillo | 1:37 PM ET | 07-16-2008

To Teri,
I read your post from yesterday about your husband's hospice experience. I get what you are saying totally. I was similarly disenchanted with our experience of hospice when my husband was in the last stages of his cancer.

The transition was abrupt and extremely painful. The loss of his medical caregivers was traumatic for both of us. I and family and friends ended up doing most of the physical care at home, so what hospice had to offer us was some useful equipment, some pain meds, some back-up and a pat on the back. There are limitations to what hospice can do. It's not for everybody.

So sorry for your loss. I'm sure you did everything to ease your husband's pain.

Sent by Marilyn | 1:51 PM ET | 07-16-2008

It would have helped in our situation if we had understood exactly what we could or could not do on Hospice. We delayed it because we were told you could not actively be seeking treatment. Of course someone could have told us Hey you can come off Hospice if something comes up you want to try. I guess we thought it was real rigid in what they would allow.

Anyway, I wish we had been able to have them sooner. My husband wanted to be at home and I wanted to do the best I could for him. I got scared a lot of times that I wasn't providing the care he needed for pain management.

To make a long story short, David quit treatment November 15, 2006 and he died on December 9, 2006. The day the Doctor signed us up for Hospice, someone came out and we proceeded to get all signed up. Well just prior to that my husband had tried his last New treatment which had left him dehydrated. I knew he really needed fluids, but I did not know Hospice was not in the custom of providing that. So we got off to a bad start, with me hanging up on the nurse because she didn't act like they could do that. Anyway they did contact the doctor and he allowed the fluids. And when they got some in him he was able to get back up around for a few more days. But we never had much time to establish a good realtionship with the Hospice folks.

I know others come to love them as family, so that is why I think if we could have, it would have been better to start earlier. They came and helped give David baths and shaved him which was a big help. They monitored his meds and that helped too.

Not sure if this helps in your decision or not but it was our experience.

Sent by Janice, Troy AL | 1:59 PM ET | 07-16-2008

Dear Leroy and Laurie,

What a decision before you both. I hope whatever you decide - whenever you decide - will give you both much more time together that has much less to do with giving and receiving care from each other and much more to do with everything else. For what it's worth, I know I'd want to stay home near my garden and my books and my own freezer with ice cream in it...and I'd have a hard time going into hospice. It's humbling to imagine such hard choices being a person who was a caregiver 30 years ago when I was 17 but who has not been a patient.

All the very best to you both,

Brin

Sent by Brin | 2:09 PM ET | 07-16-2008

Leroy and Laurie, This is my first time to write, however, I have been a subscriber and daily reader for several years. You have helped me out alot. I am a stage 4 breast cancer patient for 3 years now. I am still doing well. My mother was in hospice care at home for two and a half years. It was a God send for us. You can call anytime of the day or night and they pay for the things the patient needs (gel pad for the bed, meds, etc.) I also have a friend whose mom has been on hospice care, (on and off, mostly on) for five years. So it doesn't mean that there is just 6 months left. It just means that sweet caring people are there to help you out when you need them. It also provides emotional support for Laurie. I wish you the best. And THANK YOU for all the times you have written something that made my day so much better!

Sent by Martha Berryhill | 2:26 PM ET | 07-16-2008

Leroy,

I think you should stop agonizing about this, you are clearly not ready for hospice emotional support, and that is just fine. Not to decide is to decide as
the saying goes. Can you allow visiting nurse use their expertise for your pain control? What about giving laurie the option of their support? Shel clearly loves you dearly, and may be helped by
having someone to talk to that she doesn't have to protect, where what she needs is the center of
attention. I say that as the cancer patient not the
life giver as Laurie would say. There is no rule that you both have to be at the same place. Elissa

Sent by elissa Rosenfeld | 2:30 PM ET | 07-16-2008

I guess there are various levels and types of hospice care. If it means going into a facility, I can easily understand how difficult that decision would be.

In my sister's case, she wanted to stay at home and the local hospice group made it possible for her to have her wish. We had a home health aide three times a week, who bathed her, made the bed, etc. Best of all, she taught me how to do those same things. At least twice a week, the RN would come and she was fantastic. Hospice took care of ensuring that all the meds were delivered to the house and, as the need for pain medicine increased, the nurse made sure I understood how to administer the meds to maximize pain control.

It was incredibly reassuring to know that there was someone available to us 24/7. We simply couldn't have done it without them...

Sent by Brenda | 2:50 PM ET | 07-16-2008

Hi Leroy and Laurie,
I've seen Hospice care from both sides. As a professional I used to refer patients to home Hospice agencies. So many times the nurses would report back that they had wished the patient had been referred sooner. It would have given them time to develop a relationship with the patient and caregiver/family. In addition they could have offered suggestions for symptom and pain management gleaned from years of experience in caring for their patients. On a personal level, I have had a family member on hospice. The nurses followed my mother-in-law from home to assisted living to inpatient hospice. Several members of our local cancer support group have also gone on hopsice. Their caregives have reported that they did not know what they whould have done without them. All of them died at home surrounded by loved ones. Hospice is not about "giving up" or throwing in the towel. It is about living each day to the fullest and accessing the best care at this stage of your cancer journey. I wish you wisdom and peace in your decision. I know this one is never easy. You always have the option of removing yourself from hospice care and going back on later if you like. The good news is you have choices. The bad news is, at some point you need to make a choice. Interview a couple of the hospice agencies to see which one feels like a good fit for you. They do vary a bit from agency to agency. God bless you!

Sent by Janet | 3:36 PM ET | 07-16-2008

Hi Leroy, Well, your not completely stumped anymore. Your answer for today is "No". So feel good about that. You have answered your own question.
You and Lauri have a nice weekend, and enjoy it.
Page Hendryx - Gresham Oregon

Sent by Page Hendryx | 3:55 PM ET | 07-16-2008

Dear Leroy,

My experience with hospice care is that you and Laurie with you will know when palliative care sounds preferable to your current care which is maintenance. That was my experience with our mothers and with my husband. They all experienced a feeling that comfort was to come first, though more difficult with my husband who was 47-48 at that time. Listen to and trust yourself. Gay

Sent by Gay H McCormick | 4:06 PM ET | 07-16-2008

Leroy, My husband and I "interviewed" hospice nurses. We decided to wait, because we thought he wasn't ready. I believe in some small way we thought he would improve. When the ER doctor sent him home for the last time and I called hospice I think it was to late for me. Less than 12 hours later he was gone. I could have used the support before then. I don't want to make it sound like it's all about the caregiver, but it would have been easier to know what to expect. I wish nothing but the best for you both. Thank you so very much for your blog. My husband and I read it daily and I continue to do so. God Bless!

Sent by Dana | 4:13 PM ET | 07-16-2008

Leroy and Laurie,

How hard it is to accept that we are coming to the point where we can fight no more. I don't know that it is a defeatist attitude or giving in, just accepting what we have known all along, at some point it will be our time to go.
All of us, the sick and the healthy will come to the cross-roads too, may God grant us the strength to face it the way you have and to be at peace with ourselves, no regrets.
I think that St Francis' prayer says it all:
"Lord grant me the serenity to accept the things I cannot change,
the courage to change the things I can, and the wisdom to know the difference." - Saint Francis of Assisi

You will know when it is time.

Just know how many people care and how many lives you have touched by doing such a courageous thing as maintaining this blog through pain and anguish.

I'd have to say I would go to Hawaii just about now.

God bless you both and hope you are not in too much pain.

Sent by David Abad | 4:19 PM ET | 07-16-2008

Ok, so no decision is a decision. For you. But what about Laurie...could she use someone to assist and talk with and give her unconditional support and possibly some respite? There are two of you, and even more if you count the rest of your family and your friends, on this journey with you. Hospice is so much more than the 'end of life' care and it is unfortunate that that message continues to be the reputation Hospice seems to have. I would disagree with your nurse that Hospice is only about managing the end of life. It so much more than that for those of us that have experienced it first-hand and I think many of the comments yesterday indicated exactly that. But, it is your call and whatever the decision, it is the right one. Shake the Magic 8 Ball again in a while and see what comes up then.

Sent by jl | 4:24 PM ET | 07-16-2008

Well, there is no need for an answer today. No rush. Just whenever you feel the need. Just enjoy the day.

Sent by Diann | 4:27 PM ET | 07-16-2008

Marilyn, thanks for the validation. It seems clear that however wonderful the theory, the practice of hospice varies considerably, and when and how you can access it has something to do with insurance coverage. For my husband, he could only partake of its services when he had stopped all treatment for the disease AND was willing to stop seeing his oncologist who had become more like his GP. This was emotionally wrenching like you wouldn't believe, and dreadfully depressing for all of us.

Too, having a metric ton of hospital equipment showing up all at once, the next day, was not good.

I am willing to believe that hospice can be a good thing when its available as more of a continuum from home health care and support to true final days support. I felt like I was bucking the system daily, and there were cultural and language barriers between us and our first nurse. Not helpful. She pretty much sized up my husband when she met him, and it happened to be a really bad day, and said "he's going soon" -- even though the intake nurse who'd seen him 2 days prior had a whole different take. One thing she was good at was getting as truck load of morphine and what-not in the house; not so good at helping him figure out how to modulate it all so he wasn't utterly zonked. Or considering other drug options when morphine was too much.

If I sound bitter, let it just be a cautionary tale that not all hospices are created equal. Don't drink the Kool Aid blindly. I would advise that anyone access all possible supportive services they can lay their hands on, but make sure you get a "lead" nurse who's on the same page as you are, with whom you can communicate utterly.

Sent by Teri | 4:43 PM ET | 07-16-2008

I totally get it... before I entered cancer world, I thought things were handled was pretty straight forwardly. I was dismayed at all the decision making that fell on me (and continues to do so) and I had been a nurse at one point in my life, a student at Sloan Kettering and in early hospice homecare (late '70's).

Sent by Joan | 4:55 PM ET | 07-16-2008

Something I am not clear about in your last couple of days blog, have you decided to stop all treatment, and especially decided against Chemo? It sounds like you have decided to give up?

I don't understand why it is only through hospice care that you can get pain medication, why can't your doctor do something for that now?

Sometimes I think writing this blog causes you more depression, because it's as though you have to spend time thinking of the negative things happening to you and your body. Dwelling on what you have lost, rather than what you still have, is counter productive to my way of thinking. My oncologist told me to stop reading your blog because it was making me sad. But everyday I hope to read of some spark of joy from something that happened in your day. Certainly there has to be something?? My sister thinks I have a terrible life, but I tell her everyday I wake up I thank God that he has given me another day.

Sent by Maureen Kennedy | 5:07 PM ET | 07-16-2008

Dear Leroy,
It seems that the regrets most people have about hospice is, Why didn't I get their help sooner? It also seems that what many people who are seriously sick fear the most is losing control over their lives. I wonder if having the help of hospice wouldn't give you more control over your life and, eventually, your death. Some people have used hospice services for a year or so. This control is something that many of us won't have. Hospice in your town doesn't necessary mean going to an institution, does it (unless this is the person's choice)? I thought it meant a group of people who are expert at helping others strip away the medical-decision crap and live the remainder of their lives--however long or short it will be--wherever and however they want and as well as they can. So I don't see hospice as giving up; I see it more as taking as much control as you can over your life. But as all the writers have said to you, you will know when and if it is right for you. Thinking of you, and thanks for making all of us think about these important questions.

Sent by Patricia Boyd | 5:31 PM ET | 07-16-2008

A home care nurse may very well be just the kind of help you need at this time. It will become clear to you when/if you need or want hospice care. Do not fret about it. Perhaps your home care nurse is able to suggest pain remedies that a doctor would be able to prescribe.
Do not worry about a thing....

Sent by Jill Kipper | 5:44 PM ET | 07-16-2008

Leroy
I believe you will know when it is time. Don't make it a decision from your head....let your heart tell you when it is time. And....please don't look at hospice as giving up....it helps to see it as the way to manage the next stage. Hope you can find some peace with all of this. I know it is a difficult time. God bless

Sent by Joyce | 6:11 PM ET | 07-16-2008

Dear Leroy,
My mother passed away recently from cancer and I had never even really heard of hospice. She never brought it up in front of me; I guess she did not want it. I don't know if it would have been helpful or not but she was strong enough without it. I think she only wanted our family's support and I don't blame her.
Wishing you the best, Val

Sent by Valerie | 6:25 PM ET | 07-16-2008

Teri

You don't sound bitter, you just sound like someone who had a less-than-optimal experience. I'm sorry you didn't find the right match for your circumstances.

I can't say that hospice was the greatest thing in the world. Terry didn't look peaceful at death, just tired of fighting. Exhausted.

But I know that "our" nurse and social worker cared a great deal, and went out of their way to make things as easy on us as could be expected.

It's very hard to read the comments from those who tell Leroy that hospice means surrender. There's nothing further from the truth.

To the person who made the "screw hospice" comment: Leroy's already said in the past that he's looked into clinical trials. Perhaps you can find a less coarse way of expressing your opinion. We're smart enough to "get it" without being borderline vulgar.

Sent by Bruce | 6:38 PM ET | 07-16-2008

I have never been one to beat around a bush - do you want to lay down and die? Are you ready to go? If the answer is yes then get Hospice in; if the answer is no then stop behaving like your dying. We are ALL terminal Leroy - get rid of the pain for sure then go on to lead your daily life.

Take Care my friend

Sent by carrie Belair | 6:52 PM ET | 07-16-2008

Leroy, The decision is ultimately yours, and so whatever we say you can ignore. But you and the doctors are saying that the hospice is the place for preparing for the end of life, and it's almost like giving up, something you are not very good at. So try to avoid it until it's absolutely necessary. But again that's your decision. Keep hanging in there. Cheers.

Sent by Tom K in Sydney | 6:55 PM ET | 07-16-2008

Hi Leroy, Glad I checked back later today, to see that you did make a post...I agree with everybody, that you are making us all think about important questions. Plus people are asking you some questions back! One thing I know from reading all this is that "hospice" could mean slightly different things in different places and organizations. My husband was offered palliative care when he was diangosed two years ago. At the time he was told that the liver tumor was inoperable. He didn't think he was ready for hospice but wanted to know all about it anyway. At the time palliative care consisted of a lot of morphine and anti anxiety meds. Then after surgery, he was recovering, so the pain meds had a different job. Now he is on pailliative care again which is various meds to control anxiety, itching, and occasional nausea. So far these are working. Well anyway, I hope that you come to a decision that brings you some peace and hope, for the pain meds that work just right for you and also that you can take a break from deciding, maybe just pick one thing and see how it helps. Yes you are sure "doing your homework." God bless you for all you teach and share. Now I hope also that you can watch a funny movie, go out for a drive, sit on the porch with friends, something like that. I don't know what else to say...that means I should stop talking :) Peace be with you!

Sent by Sally (and Tom) from Spokane | 7:34 PM ET | 07-16-2008

Leroy,

Dressed up or dressed down, you're the same ol' guy. Whether it's at home or somewhere else, your writing and interaction with us through the blog will remain a source of inspiration, information, and community. I agree with a couple of the comments yesterday, if you do decide to go to a care center- make sure there is WiFi- so you can continue blogging, and if you're up to a new project, consider writing a book- possibly based around the blog entries from this site.

As always my thoughts are with you.

Dave

Sent by Dave Getzy | 7:51 PM ET | 07-16-2008

Leroy, Last night my cancer support group helped one of the members think through a different decision she is having trouble making...and we came to similar conclusions. That is, if taking this action doesn't seem comfortable today, and there is no deadline, then wait until it feels right to you.

Sent by Sheara | 8:51 PM ET | 07-16-2008

I see a lot of people saying that when the time is right you will know.

I personally don't think the time will ever be right for you...until you understand hospice.

You are accepting a specialized form of care just like you accepted cancer treatments (and I have followed your story since the beginning and have been overwhelmed at times myself by what you have gone through).

Take the service and then you call the shots. Say when you want visits, tell them your goals for tomorrow or this weekend, or the next holiday. Ask them to help you achieve what you need to do.

This moment is a gift. Many people leave unresolved issues in a blind sided death. You have some time. Let hospice help you make the most of it.

According to Dr. Ira Byock ( a former hospice medical director) there are 4 things that matter; Please forgive me, I forgive you, Thank you, and I love you. The rest is filler.

Please take the time to discover a different face of hope. You've faced harder decisions than this one. You are not giving up, you are taking control.

All my love and prayers,

Sent by Robin Watts | 8:59 PM ET | 07-16-2008

At the age of 26, I became a hospice volunteer, today I am 62.I am a RN, who has had the privilege of caring for hundreds of patients. When I assist in a birth there is joy, when I hold a patient's hand as they are dying, there is spirituality.
We are born surrounded by loved ones, yet in death we are quite often alone. Hospice care gives the patient and family the ability to control their environment and care; it provides an opportunity to write the last chapter in our lives in our own terms and exit with dignity.
My thoughts are with you and your family.

Sent by Luisa | 9:03 PM ET | 07-16-2008

Leroy,

I think I have the answer, there are no more easy answers for us. I'm to the point now that I don't want to make any decisions even on things that used to be no-brainers. I'd like to be able to get my analytical mind working again because I'm not ready to rely on someone else to make the call. Cancer sucks!

Sent by Walt from Los Angeles | 9:26 PM ET | 07-16-2008

Perspective....this is what you have given me. It could not have come at a more needed time. I will always be grateful. Thank you

Sent by Kathy | 9:39 PM ET | 07-16-2008

Dear Leroy,

I think that when you are ready to begin hospice care, you will know it in your heart, and you won't have to ask the question any more. My experience with Hospice care for my mother was that they were a communicative, kind, and compassionate team of people. They think of things that you might not have thought of, because they have helped so many others. They add a level of support for your loved ones in so many ways. I wish you courage and peace of mind as you decide what to do.

Sent by Patricia | 10:14 PM ET | 07-16-2008

Watching my family members and friends deal with cancer, I am left with the thought of staying in the now.

Sent by Mage Bailey | 10:26 PM ET | 07-16-2008

I not looking at this in a negitive way but I find myself crying at this point. Be stronger than me!

Sent by M. | 11:00 PM ET | 07-16-2008

Sharing lessons learned in my life's journey, and our common thread of cancer. 1. There are no "right" or "wrong" decisions - there are choices to be made, and as you have shown in your writings and public speak - both you and Laurie have extraordinary capacity to make informed choices. 2. When your body becomes overwhelmed, do something with your mind; when your mind becomes overwhelmed, do something with your body. 3. People come into your life as you need them, and everyone comes with a gift. Your "job" is to receive the gift.

My sincere thanks to both of you for coming into our lives and for your generous gifts, along with a gentle nudge to both you and Laurie to step back and receive the magnificant gifts from the people coming into your lives as you need them.

Sent by Judy | 11:29 PM ET | 07-16-2008

Hello Leroy and Laurie,

This is when it just plain stinks that there is no handbook, no checklist, no rules for the cancer journey. But that also makes the journey so much more hopeful.

If it helps at all - I am in the "no decision is a decsion" camp. Also in the "Leroy: Smart Man" camp.

Peace to you both during this time.

Sent by Melissa T | 11:35 PM ET | 07-16-2008

I just read the other day about someone who accepted hospice care, and the pain relief and relaxation that followed allowed them to live the last part of their life more fully, with much more quality and more time than expected. I wish that for you.

Sent by Michele | 11:59 PM ET | 07-16-2008

Dear Leroy,
I don't know what's right for you, that's something you'll have to decide for yourself.

But as someone who was a primary caregiver for someone who recently died of cancer I can say that her decision to delay hospice care made things much, much more difficult for her caregivers.

Hospice did not arrive until the day that my loved one arrived, and they showed us many tricks and tools we could have used, had we known them, to help our loved one be more comfortable.

I will spend the rest of my life wishing I could have done a better job, but also regretting that I didn't override her wishes and insist that hospice come sooner. Hospice is also for the caregivers--they support us and help us figure out ways to cope.

No one should ever enter hospice against their wishes, but hospice is not the end of hope either. It's a shift in hope--a hope for a peaceful death that does not traumatize loved ones like a hospital death can.

Sent by None please | 12:14 AM ET | 07-17-2008

Dear Leroy,
Getting the most help and best help possible is key for maximizing your quality of life. Hospice and palliative care are overlapping specialties, and it doesn't really matter what you call it, just that you get the most and best support. I helped my 40 year old brother through end stage pancreatic cancer a few years ago .. first with home hospice then at a wonderful inpatient home-like setting. They got his pain from a 10 to a 1 in a few days in the inpatient setting, and this freed him up to spend his last month with people he loved. The docs and he all said he lived much longer and better because of the aggressive, customized care. I'm a doc myself, and totally agree. Don't get hung up on the "H" word. You've already beat the odds on longevity anyhow, so you know the rules can be broken. Your blog is a wonderful gift. May you be comfortable, and live well.

Sent by Sarah Schafer | 12:45 AM ET | 07-17-2008

Hey der-

Fact: No one is getting out of here alive.

I've been a companion to friends that fought til their last breath, and to those that put their arms around the inevitable, once they knew the inevitable was upon them.

Fact: There is no 'right' way to die.

Be gentle w/ yourselves Leroy and Laurie. There is just so much a person can do in any given day.

Besides, if you end up not liking the choices you've made, there is always your next time around on this blue-green ball :).

peace
tally

Sent by tally | 1:56 AM ET | 07-17-2008

Leroy: The people you get in hospice will make or break the deal. Our wonderful home health nurse was also our hospice nurse, so our experience was great.

When we "officially" went into hospice, we had additional people enter our lives. They were nice, but wanted to talk about things I really didn't want to discuss...like our religious beliefs, talk to the children, etc. I know that would be great for some people, but I didn't want to deal with it at the time although it did help some.

One plus for hospice, if you can do it at home and not have to go to a facility, is it negates the need for the local law enforcement to become involved if you die at home. That can make a real difference for the family since there are no 911, no home visits with lights, etc. My local sheriff made a courtesy call anyway, but it was very low key.

Nikki

Sent by Nikki in Kansas | 2:32 AM ET | 07-17-2008

Dear Leroy,
I've been a reader of your blog for well over a year now, but this is the first time I've written to you. I am a pastor who worked in hospice and healthcare chaplaincy for close to 20 years. Making the decision to be admitted to hospice care is a very difficult one - and it should be. You need to gather as much information as you can, think about it, talk with Laurie, listen to your body, listen to your intuition and pray about it. Also, what I've seen time after time, in some patients, is that when their pain is managed well and controlled, some patients tend to rally, not all but some. They may feel renewed strength. Some of my patients, when they reached that point, decided to go off of hospice care for a while. They had a good pain management regimen in place and decided to go fishing, go to the beach, to the mountains - whatever their heart was desiring. Heck, Laurie might drag you to another Broadway play - with tapshoes on! That's the beauty of hospice care, Leroy, you can be admitted to care and then you can take your self out of care, as long as you feel the need. Another wonderful aspect of care I hope you know about is this - hospice nurses, in the field which is your home, are the experts in managing your pain, your emotional life and your family's needs and they are available to you 24 hours a day. Gather the information, think, talk, listen and pray. Finally, trust that whatever decision you make will be the right one for you.
kind regards, C

Sent by C | 3:08 AM ET | 07-17-2008

Sometimes I wish I had a magic ball. But, we don't so just have to play the guessing game. The right answer will come when its meant to be known.

Sent by Carolyn | 7:55 AM ET | 07-17-2008

None please -
I love how you said that Hospice wasn't an end of hope just a Shift of Hope. That was beautiful. I've never seen it described that way.
Leroy - you'll start hospice when and if you feel it's the right time. Perhaps you are trying to come to peace with the broader meaning of the word. I watched my Mom do it and I have no doubt that it was much harder than she made it seem.

Sent by S A | 3:08 PM ET | 07-17-2008

Leroy ..... I heartily agree that you are the only one who can make this decision.

I do think, however, that many people do not realize that you do not have to leave your home and go into a facility when you accept hospice care. Hospice is really only a more personalized aspect of the home health care you are currently receiving from your home nurse except that you get to make the decisions and Laurie and other loved ones have the option of getting additional help.

I must admit, when my daughter was discharged from the hospital under Hospice care, we were scared to death. At Thanksgiving she was treating brain mets but feeling great; strong, full of vigor and seemed very healthy. Until, Christmas Eve..... when everything seemed to go wrong at once. She was in and out of the hospital several times in a month. She drastically deteriorated and they spoke to us of final decisions to be made. We found it sooo difficult to even consider since we knew how strong she was and her ability to bounce back...despite the recommendations of her doctors, we felt sure that she was not THAT serious and she felt the same. She just wanted to get feeling good enough to get back into treatment. She improved enough to be discharged under home Hospice care.

Within hours of her discharge Hospice had delivered the equpment we felt we would need... a hospital bed (set up in the livingroom so she could be near the family), a wheelchair so she could be taken for doctor visits or other outings, a shower chair, a walker, surgical supplies, meds, etc . That night, all of her prescriptions written by her doctor were filled and delviered to us by Hospice. A nurse and a social worker visited the first day of discharge and helped us get situated, answered our questions, performed necessary tasks, assisted in teaching me her nursing procedures, assisted my daughter in setting up a schedule that she was happy with and made sure that we had a 24 hour/7 day telephone number to contact if we had any questions, concerns or needed anyone to visit.

We were told that if she recovered enough she was welcome to return to her oncologist to discuss further treatment. She was also told that if she felt the need, or if the family had a situatiion where they would not be available to provide in-home service, she could arrange to go to the Hospice facility for a day, days, weeks, whatever the situation called for.

As I explained before, we had nursing care, physical care, emotional and spiritual care (if we wished), help with household chores, insurance needs, just about anything we needed. The nurse and the social worker continued to tell me what we could expect, but I couldn't to be in denial that she was THAT sick. I wish today, that I had taken more heed of their advice. I was completely devastated when she did not respond but continued to deteriorate.

On February 6 my daughter chose to go into the Hospice facility. She said it was to have more privacy and the ability to express how she felt without worrying about upsetting her family. I think, however, that she knew she was coming to the end, and didn't want her family to have to see her die at home. Also, she knew her father had a surgical procedure scheduled to determine if he had cancer and I believe she knew how torn I was about leaving her to go with him at that time.

I cannont explain to you how wonderful the Hospice facility was. I cannot speak as to whether most facilities are like this, but each "room" was like a personal suite. The hospital beds had a headboard and a footboard. Windows with drapes looking out on gardens with birdhouses at each window. A TV in an armoire and a DVD player and CD player. A sleeping couch so a member of the family could stay over. Several chairs for visitors to be able to be comfortable. A truly home-like atmosphere with wonderful, compassionate and caring people. Meals were available for family members... there were screened porches, sitting rooms, craft rooms, and a chapel for patients and family to visit. Wonderful gardens with walkways and places to sit and meditate. It was a beautiful, caring atmosphere for her and for us, her family.

On February 10th, around 3:00 am, my daughter left this world; she was not in pain and I believe she was at peace. I was with her. The Hospice staff allowed me all the time I needed, then they tenderly cleaned her up and dressed her in her favorite pj's. They called her pastor and the rest of our family while I stayed with her. After the rest of the family arrived and we were ready to leave, the nurse on duty took us up to her station where they had a five candle candelabra which they lit for our daughter. They also gave us sheet that had several messages and signatures from the staff on duty and allowed us to leave our messages as well. This sheet was mailed to us later after the rest of the staff had the opportunity of adding their messages of consolation. It was a truly blessed and comforting way of helping us through a very difficult time. I can never thank them enough, and only wish that our daughter had been well enough that she could have enjoyed her stay within the facility more.

Since that time, we have heard from the nurses and helpers who were with us when our daughter was treated at home. We have also been advised, several times, that grief counseling services were available for any of us, including our out-of state son, if we wished to take advantage of it.

I hope this helps you to understand a little bit of what hospice has meant to us.

Sent by Betty Obst | 7:46 PM ET | 07-17-2008

hospice is entirely for the time when treatment is no longer helping. when one either decides to allow the disease to take its course -- or when it has become clear that the disease is taking its course without permission.

should that day come, i am told that one should seek out a non-profit hospice. (*can* there be for-profit hospices? i don't want to think about that.)

the most important thing, is for you to have adequate pain-control, and for you and laurie to have the help you need.

Sent by mary | 2:31 PM ET | 07-19-2008

Dear Leroy,

Keeping you and Laurie in my thoughts and prayers these past few weeks calls up many memories: your Halloween parties, bad Hawaiian shirt Fridays, splitting the one-time, ill-fated, five minute Nightline open into 4-parts, pioneering the "America in Black & White" series, your covering for me so I could be with my Mom during her final weeks suffering from stomach cancer, ejecting certain senior producers from edit rooms on deadline, going ahead with my colonoscopy as a result of your sage encouragement...!

Not to mention my borrowing your Halloween "Gumby" costume so I could play a giant cucumber at my kids' school's science fair! As a matter of fact, it wasn't a loan. As I recall, Laurie was most eager to get the tall, green polyurethane outfit out of the house permanently!

Just by coincidence this past week, I came across in my closet the Leroy-designed, signature "Nightline" bowling shirt you made David Westin buy us for producing the ABC News "Y2K" special the first morning of the new millennium.

We worked hard for the best damn news program on television for the Murrow of our generation. We didn't often agree on much other than our mission must always be to inform & inspire first, ratings and profits second.

You've extended that level of integrity and excellence to this blog.

As long as the bar stays as high as you've set it, it doesn't matter to me who succeeds you whenever.

Please accept my eternal gratitude for your leadership, authenticity and heart.

Gratefully Yours,
Joe

Sent by Joe O'Connor | 5:03 PM ET | 07-19-2008

Sooner really is better than later in terms of hospice care. Why not access a care system that can help alleviate your pain, and help take care of all of the other "stuff" so you can enjoy your life? I'm glad to see you and many others are thinking about hospice. Just remember that the hospice philosophy is about living your life to the fullest.

Sent by Meganne Masko | 4:09 PM ET | 07-25-2008