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My beloved 91 year old uncle was living independently until he fell about a month ago. He had been short of breath, not able to get around much, and increasingly saying he wanted to die for some months. When he said that in the hospital after his fall, I asked him if he wanted to go on hospice, and explained what it was, and he emphatically said yes.


When he was discharged from the hospital about 3 weeks ago, he was sent immediately to inpatient hospice. My sister and I, who are his only family, started looking for an assisted living place, as he was still mentally sharp and energetic and clearly not near death. And he stopped saying he wanted to die, instead he wanted to get up and get stronger.


But they wouldn't help him get up, all they do there is give him more opioids. After a few days there he was still coherent and sharp, but he started getting agitated and paranoid in the evening. Then after a few days of that, he went to sleep and has not woken up for the past week, even when we hug him and talk to him.


Its just so hard to watch him get thinner and wither away, watch him twitch in his sleep and not know if he hears us, if he's dreaming, if he still wants to get up but can't move because he's so weak from lying in bed for these weeks. How helpless he must have felt, when he still wanted to get up and no one would help him. Should we have tried to get him into rehab quickly then? His condition changed so fast...just when we were zeroing in on a place where he could have rehab, he sharply declined.


I'm trying to remember that we were respecting his wishes, but what about when your wishes change once you realize that death is actually near? How long can a person just sleep, with no food or water? Is the point of all the opioids to hasten death? Honestly I don't want him to go. He was my best friend when I was a kid, a constant babysitter to me and my sibs. I'm trying to tell him I love him but I'll be OK if he goes, but I feel so sad thinking we should have somehow helped him get stronger when he wanted to.

When discharged from hospital to inpatient hospice, your uncle was feeling good, better than he had for some time. He had more energy and he was free of some of the debilitating symptoms he'd been suffering.

That is not the same thing as his having been in a condition where rehabilitation and recovery to his previous, independent normal would have been a realistic prospect.

The only drawback to treating those symptoms is how deceptive it may have been for both him and you. He still has heart disease, his body is coming to the end of its life, but he is not having to experience the suffering that goes along with those things.

He sounds like a wonderful man, reading your profile, and you are going to miss him dreadfully. But do not be afraid that you have failed him.
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ccheno Jan 4, 2020
Countrymouse, your response encapsulates what happened with my 93-y/o mother-in-law a year ago. 
She was hospitalized with pneumonia for two weeks, from which she recovered. However, the X-ray showed two small masses that were suspected cancer, which would be left un-biopsied due to her age, advanced dementia, lack of mobility, and extreme frailty. She was released to a nearby rehab facility with the hope she’d resume eating and getting up with her walker, but she never did. 
We called Hospice (we should have weeks earlier). On Friday, the young male nurse entered her room to meet and evaluate her. My husband and I stood by amazed when his mother, her "inner teenager” awoken, saw him! She brightened up, remarked she liked his bright orange shoes, and began being silly and giggly as they bantered back and forth! We all enjoyed one lovely last laugh, which I’ve wished I had recorded for the family it was so unbelievable and sweet. I even began to imagine she’d recover. She did not look like a dying woman who had not eaten for over two weeks! When he returned Monday, Mom was unrecognizable in a near coma, and she died early two mornings later.
Thank you for helping explain what we witnessed. Mom had been discharged from the hospital and was feeling some relief because the pneumonia had cleared. But she would not eat. Her body was coming to the end of its life (I like the way you’ve gently yet realistically worded this). We were praying for one last rally. I’m just thankful that we were able to be with her those difficult days to pray and sing with her, play gentle music for her, and try to comfort her. And I’m so thankful for the kindness and consideration of all the staff at the rehab facility.
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I have done in home hospice/daily care and worked in a nursing home. From my experience Hospice Care must be authorized by a physician. So I assume that you alone did not make this choice and you did it at his request. Uncertain what your uncle's diagnoses were that contributed to his initial weakness and if any injuries were sustained from the fall when he went into the hospital.

In the nursing home I gave care on the third floor which was basically you're checking in here permanently until you check out. Many people had had wonderful lives but we're frustrated at basically living a warehouse lifestyle and felt their usefulness was done. They would apologize to me for my having to take care of them. So I laughed and joked and sang with them and I assured them that I loved my job and was honored to take care of them. They were tired and many of them did want to move on. Many times I heard: I don't know why God does not take me; I am doing nothing.

Some people who have conditions that will continue to worsen and have severely limited their ability to enjoy life or are in constant pain do choose hospice. Some chose not to eat at all although if they ask for a spoonful of ice cream they could get it and then they would say I'm happy. Hospice oversees the administration of pain medications and some times panick meds this is called Comfort measures. It is meant to be part of Compassionate Care. The idea is that the person can pass in Comfort as their body prepares to close down. But this process can have an effect on the brain and medications effects vary from person to person. Disorientation is common.

One of the hardest things I had to learn when caring for the elderly or doing hospice was that this was a one-way trip. My clients were not going to return to their Baseline level of function which has already been declining. The goal is to give them a quality life with as much love and laughter as possible. You say he is unconscious you go and visit and you seem to be the kind of person that fills that time with love. I know that one of the hardest things I had to learn when caring for the elderly or doing hospice was that this was a one-way trip. My clients were not going to return to their Baseline level of function which has already been declining. The goal is to give them a quality life with as much love and laughter as possible. I know that we often don't want let go. Please try not to second-guess yourself too much. It might be part of the denial process that you are losing your friend and uncle. Sometimes all you can be is the last angel that walks with them before their sun sets.
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cherokeegrrl54 Jan 12, 2020
Thank you for this very heartfelt post.
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Dear friend, I know what it's like to second guess your decisions about the choices that are made at end of life. For a long time, I wondered if I hastened my father's death by agreeing to allow him tranquilizers for his anxiety in his last hours. I now realize they allowed him to let go. He was on his way.

I work in Rehab in Physical Therapy, and have worked with many who are in their last days. One thing I've noticed, and it's not just me who has seen this, is that it is not uncommon for a person approaching their death to have a sudden surge of life force that has the appearance of rebounding and recovery. But in fact, it's a bright spot before the light goes out. It reminds me of how a candle flares up just before it goes out. I even saw it in my Dad when we were all hanging onto any hope that he would pull through. This is not a scientific answer, but, as I said, something I have observed enough times to see it for what it is when a person has a good day and seems ready to get up and get better. Hospice has a lot of experience with tending to the needs of the dying and might be able to answer your other questions about food and water. I know that when the body is shutting down, the need to eat and drink are no longer there. But you can still tend to the comfort of the person, mouth swabs for a dry mouth, lip balm on dry lips, turning and positioning the person for comfort, being an advocate for him if you see he has restlessness from pain, and being there for any wakeful moments to offer love and support. It's wonderful that your uncle has had such a loving niece. It's wonderful that he has you now caring enough to help see him through one of the biggest transitions of his life. I wish you peace. You've done a good job.
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jacobsonbob Jan 4, 2020
...one of the biggest transitions of his life"--I can't think of any that are greater (other than being born, which is probably equal but different) Sorry, but I have to admit this made me chuckle a bit when I read this.
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My thoughts are with you as you go on this journey. You are respecting his wishes and based on what the doctor has told you, I believe you have made the right choice - as hard as it is. My sweet Mama was in hospice before she died. The day she, my father & I decided it was the next step, she told my daughter that she was relieved and at peace with the decision. The day the hospice nurse came to visit for the first time, it was almost as if my Mama's body said "Oh, we can trust this nurse and don't have to fight anymore" because before the nurse had left the room, my Mama had a seizure and when she came back to us, she started saying goodbye and just letting go. The morphine was given a few days later when my Dad could tell she was in pain and the next day she died peacefully. I tell you all this to assure you that you have done all you can and now you are giving him an amazing gift of letting him go and telling him you'll be ok. And as hard as it is to believe right now, you will be ok as time goes by. Keep telling him you love him (he can hear what you say) and you and your sister take care of yourselves. This forum is amazing in its support and understanding. This is a journey none of us ever imagined or could prepare for, but we can stand with each other and take care of each other. Hugs, hugs, hugs to you and your family.
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You are all so kind and gentle in your responses. Thank you. My uncle passed this morning. He was a bright star on this planet! His first day in hospice, he was talking to me about a dream he had about theoretical physics... what it would take for humans to understand the fifth dimension and beyond. That was Uncle Johnny-terrible diet, terrible attitude in some ways, but lived to almost 92 because he was always challenging his mind and doing something creative. I am grateful for that lesson and for being able to be with him at the end of his life. Thank you all again.
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worriedinCali Jan 4, 2020
I’m so sorry for your loss.
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My mom was 93 1/2 & had Alzheimer’s. She fell & fractured her L2. Her pcp sent her home w-Hydrocodone! I was livid & living 3000 miles away. She wanted to die & I believe she gave up on life. Her health deteriorated quickly within a couple month. She was evaluated for hospice & they transported her immediately. She stopped eating/drinking & slipped into a coma within days. The facility put her on a Morphine drip because her pain was obviously excruciating. With her husband & children by her side, she passed 5 days later. I believe she died w-dignity, she wasn’t in pain & her care was the best I could have ever asked for. My stepfather, brother & nephew all had “caretaker burnout.” I feel this hospice facility & nurses were God sent!!! It’s difficult to make these hard decisions but, I told my family to think of her first & not our feelings. What’s best for her? For her it was to let her die w-dignity & w-out pain! The nurses turned her every 2 hours, sponge-bathed her & washed her hair. I thank God for everyone of them❤️
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To go on hospice, you need to have an appropriate diagnosis.  You don't just make a decision yourself. Have you talked to the doctors to find out what his medical situation actually is?  Sometimes people rally, but that is short-term.  I think you honored his wishes, but you should try to get more medical information. You can withdraw from hospice or if he was competent he could have done so. But talking to the doctors should help you understand what his situation really was and is.
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gdaughter Jan 2, 2020
Agree with rovana...and you can still switch Hospice providers and get a second opinion.
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Thank you so much for your responses, yes his doctor at the hospital gave him a diagnosis of 6 months or less to live and at this point, it seems he will not be with us much longer. I was just looking for reassurance about the fact that he declined so quickly once he went to hospice. It seemed like there was a very small window in which he could have improved somewhat if he had had support to get up and move about, but since he was in a facility that did not do that, he passed that window and went to sleep. It is hard not to regret that and wonder if it could have been done better and gotten him some more quality time. In any case, it is too late to do anything but hold his hand and tell him we love him. Thanks for the perspective.
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Invisible Jan 5, 2020
see above
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Vegsister- he was failing. You did not expedite his passing. A lot of times there is a “rally”. Don’t regret putting him into hospice-
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I'm curious as to how he would be accepted into inpatient hospice without a very distinct diagnosis and prognosis. Usually, the hospice workers work with the family, explaining what is going on, what they are observing, etc. I would think that hospice would welcome questions from the family, so they can help you through this process.
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BBS2019 Jan 4, 2020
Medicare hospice status is initiated by the personal physician when the patient or HC POA agree that the physical condition is terminal and no further active treatment of the issues is wanted. Usually the time frame is the patient is not expected to live beyond another 6 months, but that is not a number cast in stone. The hospice order can be renewed or cancelled if the patient recovers. If the patient is on multiple meds, those may be discontinued.

When hospice is ordered, a hospice service is called in (of the patient or HC POA choosing,) and Medicare takes care of all the bills from then on.

Medicare hospice coverage is for "in home" (or in "assisted living" or "nursing home" setting.) Medicare pays for hospice medical and social services but NOT for the room in AL or a nursing home.

Medicare rules require that "Inpatient" hospice facilities are used for patients who cannot be cared for "in home," or for short term respite care for the caregiver (several days.) Most of the patients who cannot be cared for "in home" are very close to death (within days or need intensive full time nursing care;) the inpatient hospice cannot be counted on as a place for the patient to stay until they are at the terminal stage. This is what I found out when my dad needed hospice this last year. We had a detailed discussion with the social worker who arranged hospice after dad was discharged from his most recent hospitalization. He was in hospice status for 6 months until he passed away. But he never qualified for "inpatient" hospice care: it was all rendered within his privately paid Assisted Living apartment.
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