Hospice care

MariposaTraicioneraFebruary 8, 2006

As I was leaving my sister's hospital room this evening, one of the doctors began talking to her about Hospice care. I don't have time now to do a search or even think straight, but I was wondering if anyone has had experience or know how this works. They told her today she has stage 4 cancer...don't know much about cancer and the stages but I'm assuming this stage means 'pack your bags'...

DH and DS are both sick with the flu. Just what I need right now.

Thanks in advance.

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So sorry to hear about your sister - what a very difficult time for you. We had Hospice care for my father two years ago, right in our home. We recently had Hospice care in a Hospice House for my mother-in-law. The Hospice people (doctors and nurses) were so wonderful. They were there to support everyone, and saw to it that our parents were always comfortable and pain free. Both parents had a peaceful death, thanks to Hospice. In terms of cost, Hospice was covered 100% by our parents Medicare/insurance, both in the home setting and in the Hospice Center. That included all medication, hospital beds, etc. They also provided the whole family with emotional support, grief counseling, etc., including materials for our grandchildren. I can't say enough good things about the wonderful people who are Hospice providers. It is important, I have found, not to wait too long to initiate Hospice, so that the patient doesn't suffer unnecessarily. Be sure to take good care of yourself during this painful time.

    Bookmark   February 8, 2006 at 8:46PM
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A neighbor is a hospice nurse, and maintains that hospice is every bit as helpful for the family as it is for the patient. I can't say exactly how hospice works, but if were I in your situation, I'd take a leap of faith and say "OK, we'll take all the help we can get."

    Bookmark   February 8, 2006 at 10:31PM
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Hospice can help comfort the entire family during these stressful days. Some families will not make the call because they fear it means "giving up" on the patient. Don't be afraid to check out and use their support; it can make a tremendous difference for all in coming to terms with your sister's changing health status. I do not know if she is dying, but if it goes in that direction, hospice can help make that a peaceful transition. If she can still survive this illness, hospice can step back as she improves and the need for services eases. An oncology social worker or counselor, either through hospice, or independent of hospice, can be a godsend in helping you through these days.

Our thoughts and prayers are with you in this hour.

    Bookmark   February 8, 2006 at 11:00PM
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We're meeting with the Hospice staff member tomorrow morning to hear what they have to offer. We're the type of family that takes all the help we can get. My sister was told by the doctor in my presence that she will die from this cancer. They were quite blunt too about how much times she has...3-6 months, though one doctor said chemo might buy her a year or a little more. This is very new for us because we've never dealt with anyone in the family dying from cancer. It feels like they're on 'death row' to be honest. She's weak and recovering from surgery, but hasn't shown that the news has rocked her world yet...too much morphine I imagine.

Thanks for the info and prayers. I'm honestly in shock and a bit numb at the moment.

    Bookmark   February 8, 2006 at 11:20PM
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Mari, I am so sorry about your sister. Hospice care is wonderful. They are compassionate to the patient as well as the family. In addition to a nurse, a Certified Nurse Aid they usually have a volunteer for the family. The vol. can either run errands, hold hands, let the family members talk, anything the patient/family needs that the Nurse and CNA don't do. Hospice is primarily used in the last 6 mo. and excellant at comfort measures.

    Bookmark   February 9, 2006 at 8:41AM
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((((hugs)))) to you, Mari. I'm so sorry.

    Bookmark   February 9, 2006 at 9:11AM
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I am so sorry for your sister and your entire family. It is heartbreaking to watch someone suffer.

My mother used Hospice last year when it became obvious that my dad was dying. He passed away exactly a year ago tomorrow. My mother must have been in denial, because she was mortified when she found out they were basically there to help my dad die peacefully. She thought my dad would somehow recover.

But their compassion and counseling was invaluable once she came to terms with reality. Their counselor even came to the funeral which we thought was very nice.

You'll be very pleased with what they have to offer.

I'll pray for you all.

    Bookmark   February 9, 2006 at 10:22AM
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My mother was diagnosed with stage 4 cancer (it was already at stage 4 when they found it). When cancer is at stage 4 it means it has spread to another organ (they consider the brain an organ, that is where my mother's was). It would be at Stage 3 if there was lymph node involvement. My mother's skipped 3 and went right to 4 (they removed her lymph nodes and found nothing).

My mother was given 3-6 months and lived about 1 year and 8 months. She wanted to die at home (and my father wanted that as well) so the Lowell Visting Nurses helped us at the end (my father handled her care before that. I really gained a lot of respect for him for what he did). LVA is a a visting nurse association that does hospice as well as other home care services. We didn't use them for long, but they were wonderful. Her last day they were there even though there was nothing they could do (she was in a coma and didn't have an iv or anything) and her doctor (a close family friend) was there. They were very kind, respectful and honest. They gave us our space and didn't hover.

You may find that it is a little early for her to have hospice care, especially if she decides to do the chemo. There are other at home care services, though. Also, just so you know, chemo isn't always as horrible as people think it will be. My mother did it (as well as several surgeries and radiation) and she did not get sick once or even lose a pound (she was actually pretty mad because we made her gain wait before the chemo, she was really petite, and she didn't lose the weight with the chemo so she ended up heavier than she had ever been.).

I'm so sorry about your sister.

    Bookmark   February 9, 2006 at 11:02AM
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Mariposa, hospice care is the absolute best thing you never want to need. As IÂm sure youÂve surmised, itÂs specialized end of life care. The nurses and aides who provide hospice know the issues involved with terminal illness, from pain management to how to make a bedridden patient more comfortable. Despite knowing my mother had terminal cancer for years before her final decline, IÂm not sure we would have made it through those final months without hospice support. Because of hospice support, we were able to care for my mother at home, which she very much wanted. Hospice also provided councilors and even a minister, and they provided information that saved my father lots of money.

Cancer is an unpredictable disease. My mother survived almost seven years with stage 4 colon cancer even though 95% of people with that diagnosis donÂt make it to five years. She enjoyed a good quality of life for most of that time. During her last couple of years, she participated in a couple of experimental drug trials, both of which went well. Every case is different. The doctors have given your sister a good estimate of her prognosis.

I remember how lost I was when I was in your shoes. My heart goes out to you and your family.

    Bookmark   February 9, 2006 at 11:07AM
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Mariposa, I have nothing to add but my support. I'm so sorry your family is faced with this.

    Bookmark   February 9, 2006 at 11:40AM
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Thank you everyone for your comments, suggestions and support. Sorry for not adding each name but my mind is a bit 'out there' right now.

Just got off the phone with Hospice and was amazed to find out what they have to offer. However, another sister of mine is suggesting that we contact the MAYO clinic in Florida (not sure why FL), to discuss getting Jacqueleyn into a research programme...sounds more like a guinea pig situation to me. As you can imagine, in a large family of ours we have a zillion ideas and everyone thinking they have the answer.

I like the sound of Hospice but didn't get to finish chatting with the lady about whether Chemo would be out of the question.

I really do appreciate all the personal information added here because it's been helpful. I know enough to understand that this is a serious matter, but I can't help thinking that there is always hope... We understand that her death to this disease is inevitable but a bit more time wouldn't be so bad. Thanks again.

    Bookmark   February 9, 2006 at 12:33PM
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Just clarify on the chemo and hospice thing. What I meant was that generally speaking, hospice deals with end of life, palliative care. They are helping people who are not continuing treatment and are interested in other assistance (feeding, pain killers) only. There is other home care available to people that are doing treatment, such as chemo. But technically it wouldn't fall under hospice.

    Bookmark   February 9, 2006 at 12:54PM
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You can move in and out of Hospice as well. They explained that to my Dad when he opted for Hospice care. They said if a new treatment came along he wanted to try, he would transition out of Hospice, but the door is always open. We felt better knowing that choices continued to be there. I can't say enough good things about the Hospice concept, or the beautiful people who work for Hospice.

    Bookmark   February 9, 2006 at 1:19PM
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Hi! Sounds like I'm in a similar position to your sister. In October I was diagnosed with a rare and aggressive cancer that had spread. At our first meeting with the oncologist i was told that this is not a curable cancer and that with no treatment I would live 6 - 9 months and with treatment 9 - 12. I was not a candidate for surgery or radiation since the cancer had spread so much. The oncologist was proposing an aggressive chemo that had only a 40% response rate. 2 year survival less than 5%. However he added that what I had going for me was that I was young (44) and in great health (other than this little problem) and that someone had to be in the 5%. Hospice was never mentioned. I began chemo on 10/17 and just finished the 6th round (it will go on indefinately). However the size of my tumors have shrunk 60% since diagnosis and no new ones. So far I'm a success story. The doctor is even talking about giving me the "summer off" if I continue to respond in this way. While the chemo is certainly no picnic; it is not as bad as I thought. Nausea/vomiting is 100% controlled by medication; so that is not a problem. Being bald is the least of my problems and hey I don't have to shave my legs. The worst is the fatigue and some bone/muscle pain 9bedrest and Tylenol help but out of every 21 day chemo cycle I feel more or less like myself for about half the days.

Anyway... I don't know if my situation is relevant to your sisters but I wanted to give you another perspective. Everything I have heard about hospice has been wonderful and won't hesitate when the time comes. My thoughts and prayers are with you and your family.

    Bookmark   February 9, 2006 at 7:38PM
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Would you mind if we kept in touch via email? Everything you said there was VERY helpful and hopeful! I had to have a serious talk with the doctors today and tell them that we want intervention. You can't just say there's no hope and leave it like that. To our surprise, they actually went from 'no hope and get to Hospice' to "we're going to meet and discuss some alternatives and see what can be done."

I'm so glad you shared what's going on with you, and I am deeply sorry to hear that you too are in a similar situation. Sis is 44 as well and in good shape (other than this). She had more energy and life than I've ever had, so that was a complete shock for us. I'm the one that's always struggled with health issues and cancer scares (thank goodness they were just scares...up to now).

Take care of yourself and we really appreciate your sharing.


    Bookmark   February 9, 2006 at 11:38PM
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i sent you an email offline. believe in being realistic but there is always HOPE! Would love to hear from you!

    Bookmark   February 10, 2006 at 7:47AM
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Well for the time being we won't be needing hospice. They're going to try chemo and sis already has a port put in. She also needed 2 pints of blood.

Anyway, Hospice folks sounded very NICE. They're sending us info and eager to help in any way they can. I'm going to volunteer a little time every week as an interpreter. It's the least we can do because they'll definitely be needed later down the road.

Thanks for all the advice on this thread, and thank you very much Hollybolly!

    Bookmark   February 10, 2006 at 10:19PM
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One thing to consider, my experience with hospice is that they regret that families call them at the LAST minute, when often a family could benefit much earlier from even minimal hospice services (the patient needs someone non-family to talk to about pain management or anything, the caregiver needs an hour to do errands, etc.) So listen to what they offer and don't be afraid to use it. I had a very positive experience with Hospice during a difficult time. Bon courage going forward.

    Bookmark   February 21, 2006 at 12:38PM
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Well sis is having chemo and still getting help from Hospice which is a great comfort to her. She's being released today (yesterday there was a problem so they kept her overnight), and Hospice will have a hospital bed, shower chair, and nurse to help with meds. Thanks lpolk for the added input.

    Bookmark   February 21, 2006 at 5:03PM
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Mari, I am so sorry for what you all and especially your sister are going through.

My Dad was told he had 2-6 weeks to live in early Feb 2000. We immediately got in touch with Hospice and they sent someone out to interview us, and set us up with nurses immediately. They were so compassionate, and helpful in ways you can't even imagine. My Dad lost control of his bodily functions, so they were able to take care of the diapers and sponge baths, which would have been uncomfortable for my Dad if either my sister or I had to do it. They also administered the morphine most of the time. In fact, right after my Dad passed, one of the first things the nurse on duty did was flush all the remaining morphine down the toilet in the presence of one of us. But they are there to comfort both the patient and the family, and were like angels to us.

We understood that it is expected to tip them at the end of their service as well, and did so with no regrets.

Hollybolly, my prayers are with you and your family too.

    Bookmark   February 22, 2006 at 12:24PM
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