Well the crisis has come with my Dad. His caregiver/companion (who was angling to marry him)abruptly quit last Tuesday and stormed out while my sister was there. I guess that caring for a 93-year-old mostly blind wheelchair-bound cancer patient on a mechanical soft diet got too much for her (she’s in her late 70s herself) and I don’t blame her for being unable to continue their arrangement, but it wasn’t handled well. Dad feels betrayed (“she promised she’d keep me out of assisted living”) even though of course no one can make such a promise and he is smart enough to know that (retired physician, but it’s different when it’s you). Having his own “independent” living space meant so much to his dignity and now he has to give that up for bureaucratic professional care, even though it is very nice (and costly, $126K a year at his continuing care community). We can’t supervise external contractors to come into “independent” living, because we live 1200 miles away. I am going out to MN on Christmas Day and staying possibly through the 21st of Jan to get him moved. I got permission to teach the first week of classes of the spring semester via Zoom, although that was a major concession from my chair. I told him it was either that, or I had to take FMLA leave for the semester, so he agreed it was preferable. Fortunately I have a prior relationship with 2/3rds of my students this coming semester (teaching all in the major) and I think they will be able to deal with it. I am very stressed out about it because I am worried about being able to care for my father (take him to treatments, make and serve his meals, help him with the bathroom in the middle of the night, get him moved to AL) and also being able to prep for the semester. Oh well, it just won’t be that great of a semester I guess.
My sister has been taking him to radiation treatments for the inoperable tumor in his head and he will start immunotherapy when I am there (and possibly another course of radiation; it’s unclear until they assess the results of the first bout of treatment). He is extremely weak, sleeps most of the time, and has fallen into despondency and cries silently, according to my sister. We are trying to set up the AL unit so that the furniture positioning and travel patterns are familiar to him (sometimes he uses a walker to transition to and from bed or bathroom). He has started to have a problem with wetting himself when he can’t make it to the bathroom on time (he moves very slowly and has already fallen several times), but he won’t wear Depends. I’m not sure the staff of AL is going to be on board with that.
This is just a long vent and I know many other people have experienced similar things with their parents. All I can say is thank God he has money. I worry about outliving mine if I ever get as old and sick as he is (I pray that I don’t).
I don’t think he’s eligible for hospice quite yet; his illness isn’t technically terminal (localized, not metastasized) and while my sister and I believe he is in a downward spiral and will probably not live that much longer (I don’t even think he’ll be in assisted living for a year), he is still technically still under palliative treatment and not on a death watch. I also don’t think he would tolerate being told that he is the recipient of hospice care because he would see that as an admission that he is going to die, and he’s not ready to concede that yet. He has been living in a fantasy world of “independence” provided by this friend for the last three years (since a fall in Dec. 2019 and through Covid) and that fantasy has just been abruptly and cruelly terminated. He needs to come to terms with that, first. I am very glad that he even agreed to go to AL. His pride is enormous. Perfect stereotype of the great doctor who is an awful patient. I was worried about an irrational refusal and having to force him, but he seems to accept that AL is necessary now. It was a huge deal for him to even be able to say that. I’ll research hospice options but get him into the AL unit first.
As long as he is being treated for the cancer, he probably doesn’t qualify for hospice. My mother was diagnosed at 95 and chose not to be treated, so she was eligible. Turns out, she herself signed the papers for hospice, and passed away the next day. She was ready to go, but it sounds like your dad isn’t.
Hospice isn’t just for the imminently terminal, and if you are in for a certain diagnosis, you can techinically still get treatment for other things. However, his inoperable brain tumor would be the diagnosis for hospice Medicare, I presume. If it is inoperable, does it matter if it metastasizes? He is not having surgery, right? Is radiation shrinking it substantially for now.
I can see how you might want to wait on the hospice while dealing with AL, but my mother was on hospice three times, for several months each time. The services were so helpful, especially the aide and nurse.
Is the assisted living room/apartment very different from the independent living room/apartment? Does he have to physically move or are different services provided in the same space?
The treatment goal is to shrink the tumor so that it does not put pressure on his eye and brain, thus giving him time to die of something else, essentially. If it were let alone, it would cause acute discomfort. The hope is that the radiation, in conjunction with immunotherapy, will isolate and shrink it quite a bit and allow him to complete the dental surgery he had embarked upon that has left him toothless (he can’t complete it until the therapy is done). If he can eat solid food again it will be a major contribution to the quality of his life. As it is, he needs to have two out of three meals in "supportive living’ (the next level after AL) because that is the only unit that serves a mechanical soft diet and the residents have to be watched while they eat because there is a higher chance of choking (most who are prescribed this diet have issues with swallowing, which is not my dad’s problem). Once he completes treatment for the tumor and can complete the dental surgery, he can eat normally again and have his meals in the dining room (an aide will bring him there).
He has to move physically out of his “independent living” apartment he has been in for a few years and into a separate AL unit. The rooms are L-shaped and have a little kitchenette (sink, refrig, and room for a small microwave), a private bathroom, and a sitting area. They open onto a common area with couches, fireplace. TV, long dining table. It’s pretty nice actually.
They did an assessment of him for AL as follows. 0-20 score is independent living. 20-40 score is AL. Over 40 is Supportive Living. He scored a 29 (except for the mechanical diet issue). He is not senile and he would be extremely miserable in Supportive Living with the memory care patients. It’s not the right place for him. AL is the place. He is very weak and I do not think he will ever “recover” a level of past vigor but now is not the time to confront him with this. It’s been a long time a-brewing.
Fortunately this place where he lives is the Cadillac of continuing care facilities and is associated with the Mayo Clinic. It is physically connected via subway to the Clinic’s buildings. He is a retired Mayo physician and all his medical care is there. He is linked there by golden handcuffs.
He just finished his first course of radiation treatments. They have the “graduating” patients ring a ship’s bell on the wall three times to signal they are “done” and make a little video. It’s a little bright spot. As a Navy veteran he liked this.
So is the prognosis for the tumor that he will live for years with the radiation and immunotherapy, which are palliative but not curative? The assisted living sounds nice! I hope all goes to plan and he can eat again with his cognitive peers.
Well he may not live for years, but the time he does have left will be pain-free from the tumor. Yes, the radiation and immunotherapy are palliative not curative. They will do a CT scan to see if another course of radiation is indicated in conjunction with the immunotherapy, or whether one course is enough. Thanks!
@NJSue. I am truly sorry about your dad’s condition. Concerning palliative care and hospice, my experience is limited unlike @compmom, we were told my dad will not receive any treatment or therapies if we choose home hospice for him. His condition is advanced vascular dementia so there is no treatment, unlike your dad’s cancer. Dad was hospitalized last month due to TIAs and he has not been mobile since then. When I inquired about PT, I was told no PT if on home hospice.
My mother could technically have treatments not related to the hospice diagnosis of dementia, but it was discouraged. However anything we could argue was palliative was a possibility. For instance, she had a huge hematoma above her eye after a fall that was swelling and painful. The doc lanced it, and also did a CT. The CT was especially questionable on hospice. Our hospice stretched the definition of palliative but we also could take her off Hospice Medicare for a day and reenroll her. No PT, absolutely, though one of the hospice aides walked her up and down the hall the first time she was on hospice. By the third time she was bed bound.
She also had vascular dementia along with a host of other things. For a person in clear decline (weight loss for instance, or bedbound), dementia is often used as the diagnosis for Hospice Medicare when a specific other medical diagnosis is not yet clear.
If a tumor is life-limiting but palliative radiation is being done, some hospices might take him, some not. Around here there are also transitional “Bridge to Hospice” palliative care programs.
It’s interesting to hear that some doctors and medical groups’ different thinking on palliative and hospice admission. My dad’s doctors and hospitals are in the northern suburban area of IL and his specific healthcare system is very dominate.
I noticed a big decline in my dad’s condition, mentally and physically this year. (He decline was steady for about 3 years.). At his last scheduled appointment with his neurologist in August, I asked when and how does a patient qualify for palliative or hospice. He said he doesn’t recommend palliative and will order hospice for dad when he shows sign of decreased appetite. In early November, dad appeared to be having a stroke so we took him to the ER and was hospitalized. The medical staff said he didn’t have a stroke but had multiple TIAs over the course of the year, after comparing CT and MRI results. They only hospitalized him bc he had a bowel blockage. Over the course of the week, doctors said there is nothing they can do medically and that he should not be returning the hospital because nothing can be done for him. I asked again about palliative and hospice and the initial consult immediate said that dad would not qualify because his condition did not look imminent. I asked how that is possible when his condition is worsening and doctors have all said he should go home and don’t seek rescuing medical attention. After a few days of back and forth, palliative finally approved it and ordered home hospice since we decided to take him back home and hire live-in private care staff. The palliative directors said they take each patient’s case seriously because they have to certify that patient really has no other options remaining. At the discharge, they thought he may have about 6 months to a year remaining.
Now about one month later, Dad’s condition has declined even more rapidly. He’s mostly unconscious and unresponsive the last 4 days. Hospice nurse is now visiting daily, their care, along with our live in care staff, have been very helpful. It has been hardest on my mom seeing his daily decline. I don’t know how may days or weeks we have with him, but am so relieved that he can die in his home where he’s most comfortable. Sorry for the long post.
It’s so very hard to prognosticate for end of life when it’s a non cancer diagnosis and the government and insurance regs make it so there are many hoops for doctors and nurses to jump through to certify for hospice. What ends up happening is that for most patients, they only get services for the very last few days of their lives when they should have been able to get help for months. It’s a broken system and is getting worse as the for profit sector buys up more and more community based not for profits.
My advice to families is to keep pushing the doctors, and to talk to different hospice programs if necessary.
Thinking of you. My dad with dementia and a host of other health problems (epilepsy, diabetes) was on hospice for the past two years. He declined over them, and this past Tuesday took a dramatic turn for the worse. He began actively dying on Tuesday and he just passed last night. I was so grateful I could be there for him, but it also was incredibly hard, giving morphine and other meds every 3 hours and watching him struggle. My mom also has dementia so the care was on me. If hospice is coming every day, it is likely the end is very near. My heart goes out to you, and I wish you strength for the journey ahead.
@cinnamon1212, it’s wonderful that you could be there for him at the end. Hugs to you as you navigate your next steps and care for your mom. I have been there through the decline/death of both my parents as well as my FIL. It’s not easy. My thoughts are with you as you grieve during what is supposed to be a happy season.