Uncle went quickly from feisty and sharp to unconscious, were we wrong to put him on hospice?
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.
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May God grant you grieving mercies and comfort during this difficult time.
You did the right thing by honoring his wishes, even though it hurt you. Hugs for standing up and being his advocate.
Dawn
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.
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.
I am so sorry for your loss. My mother has had TIA’s, Strokes and a heart attack in the past. Her most recent two strokes back in late March 2019 that left her with Vascular dementia, and I can’t stress how the Dr, Specialists and social worker pushed me to put my mom into a Rehab hospital stay (bc her Medicare insurance pays in full for up to 100 days of this) however I refused This offer and took her home.
I do whatever my mom can and wants to do, she has a great appetite, not too many meds, takes vitamins/minerals and we do all sorts of therapy from mental stimulation to physical therapy. I am not a medical professional, I’m an Accountant that put my career on hold to take care of my mom full time.
I watched my father deteriorate in front of my eyes with two cancers (A lot of morphine) and even though they mentioned he had weeks to live the Surgeons still performed surgeries (yes more than one surgery) it’s disgusting what some medical professionals do for Insurance money!
Thanks for sharing.
TO VEGSISTER:
You both did your best, please don’t feel guilty, keep on visiting him, keep on touching his hand and hugging him (he does know you’re there). You are his Angel.
My brother went into the hospice facility and did walk out. Wasn’t his time. He was discharged.
Next time he entered hospice he stayed until he died.
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.
He could also be experiencing side effects from the Opioids. Maybe you could ask them for an alternative for the Opioids?
From my experience, when my father just slept all of the time and it was hard to wake him up, along with him eating barely little and drinking very little, Our hospice nurse told us that it would be days. We didn't like to hear that and I am sure if someone told you that, I am sure that you wouldn't like it either. I am hoping that his condition improves but I don't want to lie to you either.
Prayers and hugs to you, him and the rest of the family.
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.
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.
Do you think he truly understood what hospice was when you explained it to him?
Has he fallen before or done rehab before? Was he a candidate for rehab? My mom did rehab at age 93. So he isn’t too old to do it but it does take dedication and hard work. My mom has Parkinson’s disease and manages to do rehab and home health with occupational and physical therapy. Rehab actually lessons pain. Did the doctor at any time recommend rehab for him? Or even home health? Would he have cooperated with the rigorous routine of rehab? It’s six days a week from early morning to late afternoon. Just a small break for lunch.
As you know hospice is palliative care which focuses on pain management instead of recovery from a fall with therapy. If he was in pain and I am sure that he was he could have answered yes to do hospice to have relief from his pain.
In house rehab is approximately three weeks. Home health is usually advised afterwards as well. Home health is good but not as intense of a program as rehab.
Do you have the authority to speak to his doctor to see if he is a candidate for rehab? Otherwise HIPPA laws will prevent them from giving out any information. You can still update them on his status. Speaking to his doctor will allow you to put your mind at ease that hospice is where he is supposed to be and know if he can qualify for rehab. He may not even be healthy enough to do rehab.
Let us know how he is doing. We are here if you need to talk. Take care and many hugs!
The opioid your uncle is receiving are not provided to speed his end but to alleviate his pain. Like Rovana, I recommend that you talk to your uncle's doctors -- and talk to the hospice nurses. They should be able to explain why they are doing what they do and how this is affecting your uncle.
I hope they will be able to give you some reassurance and peace of mind.