True. When my dad was in what turned out to be his last month of life, I had doctors tell me he had six months or more, and others tell me they’d be surprised if he lasted out the week. It really is impossible to tell with anything like certainty. But the fact that the question is being asked probably means that it’s time to start thinking in terms of quality, not quantity, of life. At least, that change of perspective helped us make decisions after a certain point.
My father had a massive stroke and died a month and a day later. There were a few times during that month that stages of the trajectory were clear but most of the time, the overall course was vague. The clear times were the following: the stroke happened, and it was clear within a day or so that my father’s speech and motor skills on one side of his body would be affected, probably permanently; my father was moved to a nursing-home-type facility and was very depressed and it was clear to the family, if not the medical professionals, that he would never be happy again; he contracted a septic infection and although the infection seemed to be treated successfully, he stopped eating and was in and out of consciousness, so it was clear that his quality of life was going to be poor; my mom decided, with the aid of my siblings and me, to not have a feeding tube inserted, and so it was clear my father would die sooner or later from starvation, if not something else. Some nurses were willing to offer predictions of how long my father would last without nutrition but the predictions varied (two weeks to several months). It turned out that he died one week after we made the feeding-tube decision. Early one morning, one of the nurses at the facility told my mom and sister that she thought my dad would die that day. My brother and I made the hour-long drive to the facility and arrived at about 10 a.m.; my dad died a little after 11 a.m.
Ack too late to edit. Someone here on CC told me about the elder frailty scale which is a good predictor of how they will do after surgery. I’ll try to find and post it later. When a specialist was recommending surgery, it helped me convince my brothers that we shouldn’t do it. ( The primary was also adamantly against it which helped. )
“I think you have rose-colored glasses on regarding how difficult this will all be”
I saw my mother starve to death from cancer over six months (doctors were surprised she lasted over a month…), initially able to move around somewhat but not able to self care nor talk. My father and aunt took care of her daily needs, with only a visiting nurse once per day to check vitals and I helped as needed. I usually spent four hours every day, while working full-time, to help take care of her. Bed sores, fighting care from others, ostomy. Trying to get her to eat and she wouldn’t. Knowing the outcome. Keeping her at her home whether that was the best idea or not. Nothing could make my glasses rose-colored when regarding day-to-day care of an infirm person, especially one not able to take care of themselves. The possibility of psychiatric issues, not limited to dementia or emotional outbursts, has already been seen with other relatives.
And I do understand that despite the expectation for care of one’s parents personally, the possibility of an outside of the home placement might end up on the table.
The best we can do is try to prepare, and try to keep priorities straight. If the caregiver has a psychiatric break or dies (in the case of my aunt, not when caregiving for my mom, but for someone else, for over ten years), that helps no one. I have always said that I would be happy living in a cardboard box on the street as long as I was with my family. We can do our best to protect our lifestyle, and certainly the impact of siblings on what we do has to be considered, but when it comes down to it, I can’t wash my hands of my father’s care.
Being “elected” caregiver is kind of like being “elected” to be a parent. The timing is usually not the best, and what it really means to take on the responsibilities are not clear at the time it happens. Even with a parent outside of the home, there are still financial and medical concerns to take care of.
I should also note that my father lives very close to me, and has no social life outside of his kids and grandkids, except church one a week. That does have an impact on whether an elderly person will move or not. He does live close enough that I could live at his house so he had someone overnight with him, with some help from my nearest sibling.
No one knows their own trajectory. We have already significantly changed our lives based on my mother passing and my father becoming older. He has a Life Alert, and so far all it has done is freak out me and my brother, because if he is out of the house, it can’t check in with the base (he is afraid to take it off) and they call us to see if he is okay. Because he doesn’t always have his cell phone charged. We had a scare where my brother couldn’t reach him, and wanted us to go over, but at that point, we didn’t have the security system information so I asked him “what could I do?” if I did go to his house. Now I have the information at least.
@rhandco, make sure to take care of yourself first, whatever you do. My husband has been his parents’ full-time, 24/7 caregiver for more than two years. His father objects on the rare occasions (once every three months or so) that he leaves town to come to our home, to see our daughters when they are here. My husband is depressed and has been having suicidal thoughts because of the situation. He can’t easily see a mental health provider because of his father’s expectations concerning time off. His parents are both mostly confined to wheelchairs. They receive daily visits from home health-care workers, but that is only to take care of his mother’s toileting needs. Everything else is on him.
[Quote ]
And I do understand that despite the expectation for care of one’s parents personally, the possibility of an outside of the home placement might end up on the table.
[/Quote ]
What is the source of the expectation of personally caring for a parent? We felt no such expectation when we were deciding on my parents’ care.
That was nearly six years ago, and my mother may live for another ten years or more. While caring for a terminal cancer patient has given you a taste of the difficulties of caregiving, keep in mind that elderly parents can linger on for years and years, slowly deteriorating and taking more and more of your life.
Rosered is right; if you do this, build in respite time for yourself right from the beginning. This will mean either family has to step in to spell you, or your dad will have to pay someone. But it’s essential. Caregiver burnout is a real thing.
My dad expects us to care for him at home until the end. His mother did it for his father for 20 years, his sister did it for her H for 25 years, and he nursed my totally-bedridden mom, aunt and grandmother until they all passed. Mom was totally bedridden for ten years. He will not allow anyone else to come in. Period.
Please consider the effects on your own health and sanity of being a full-time caregiver for a parent. More than 50% of people over age 85 have dementia, and people with dementia do things such as hitting their caregivers, wandering from the house, falling down steps, accidentally starting fires, and choking on food when their bodies forget how to eat. they also often have severe difficulties with sleep, and end up pacing for hours at a time during the night. Then there’s incontinence. Even if you can deal with all these things under normal circumstances, what if the caregiver becomes ill or if one of his or her children needs help.
Here is the frailty scale. Many doctors, like the specialist who was recommending surgery for my dad, will look only at the presenting problem. This scale takes into account the whole person and how well they are functioning in general. This is one way of predicting how well the senior will do post-op. My dad was about 7.5 at the time.
It may also help to think about it this way: You’re probably not looking at a binary universe of outcomes for a frail elder. Say you were considering surgery for yourself. You’re between 1 and 3 on the scale. The surgery will probably fix the problem, or it may not. One or the other. For surgery on frail elderly, there’s another outcome which from what I’ve observed and experienced is far more likely. They survive the surgery, and the problem is addressed. There is then a very long recuperative period, probably with complications, probably extended time in skilled nursing. And they will very likely never return to their previous level of function. This is where you have to start considering quality versus quantity of life.
http://geriatricresearch.medicine.dal.ca/pdf/Clinical%20Faily%20Scale.pdf
I would put my mom at a 7. Is this used by medical professionals to determine treatment?
@LasMa that scale is excellent. The drawings and dementia description are very good. My mother is mod dem and a 6, FIL a 7.
" What is the source of the expectation of personally caring for a parent? We felt no such expectation when we were deciding on my parents’ care."
I mentioned that my parents were first-generation Americans (both actually had illegal immigrant parents, but at the time of the wars, no one seemed to care about immigration status if they needed people to fight or work). You just don’t “abandon” your parents, you ruin your life to take care of them (no, I’m not making that up). In my case, I am doing all I can to make sure the “ruin my life” part does not come true. Just acknowledging that death and disability do occur, and one should plan for them, is hugely different from my parents’ generation.
My aunt was a caregiver for her friend, for over ten years. It used to be daily visits until my aunt’s health started to go, but even so, she did the checkbook and all other finances even when she couldn’t get to see her friend every day. That friend, she was a caregiver for her mom, severe rheumatoid arthritis for at least 50 years. Her friend worked full-time, while her mom was bedridden at home, got home, emptied bedpans, and took care of her mom and her dad (who was “abled” but wouldn’t lift a finger to help in any way: he expected dinner on the table). Didn’t
If anyone doesn’t feel that at their home is the first choice for them taking care of their parent, that’s fine, but that is different from how I was brought up, and what others have done. Also my father lives close to me (we moved to be near him and near our jobs), which seems to be a complicating factor for many people.
As for the frailty scale, my dad is at a 3 with intermittent mild dementia. My MIL is at 2, but is more than 10 years younger. (neither has smoked, neither is or has been overweight, both regularly see doctors). My best friend’s spouse is a 5 and works full-time and takes care of the family, with help of the kids and spouse.
My mother was a 4 when she had triple bypass. She had a tough week, post surgery, then a decent stay in skilled nursing/rehab. Once home, she refused any further PT or cardiac rehab, did no walking or other strengthening. Went back to not watching her diet. And so has declined to a wheelchair. (This isn’t common in my gene pool. It’s her own reality.) And the surgery, while it prolonged her life, did nothing to change the quality of our family life. (In her case, no dementia, but she’s not much interested in the warm and fuzzy, except as it relates to her wants.)
Offering this counterpoint because I think cooperation is an important factor.
You can discuss the frailty test with the doc, whether or not he/she already uses it.
RH, “abandon” is one of the guilt words, paints an extreme picture. I have by no stretch abandoned my mother. Nor have other posters, who do even more. This is your choice. We just want you to understand the whole of it, which includes the impact on spouse and kids. Don’t somehow “abandon” them, in making decisions. Or in framing your views.
I don’t think a 3 with “mild dementia” is a true 3.
We all know stories of sacrifice. We all hope to do the right thing. It’s not always/only the ways of prior generations. There weren’t the same choices or the level of care outside. Many of our elders thrive with more attention, medical and social, than we can offer at home. It’s a personal situation. But also a family decision.
And it cannot be viewed simplistically. “They did it, so I must.” Or I’m abandoning them.
RH-
Does your brother do more than hold a vice grip on your dad’s money and not spend it for his care? That sounds more like “abandonment” if you ask me.
LF, true about cooperation. If the elder is unwilling, or unable in the case of dementia, to provide their own aftercare, is the family going to be able and willing to provide it? Or to pay for home health care?
rhandco, I respect your cultural tradition. That model of care was appropriate when:
a) the caregiver didn’t also have an outside job,
b) the caregiver lived in the same house with the elder (so that, for example, she didn’t have to make two separate dinners every night),
c) the other adult children lived nearby so that they could help, and
d) elders usually didn’t live on for years and years in an ever-deteriorating state, due to medical advances.
If the conditions of elder caregiving have changed – and they have – it may make sense to update the tradition to fit the modern world.
Please note very well: No one on this thread is saying you should abandon your father. The question is, given that this is America in 2015, and given the realities of your own life here and now, what is the best way to get him the care he needs? Most of us have found that over the long run, abandoning our own needs and lives and spouses/kids really isn’t the best thing for anyone, including the parent.
Have you ever visited a nice Independent/Assisted Living facility? The good ones are like Disneyland for seniors.
So true that there is no cookbook for eldercare and one size does not fit all. The challenges are vast and real. No one perspective covers all bases. I feel that my primary obligation is to the family I created. My children did not line up behind my parents for my attention, even when they were ill or one dying.
That said, my gratitude for my parents choosing to move to excellent care half an hour from my house is vast. I have a professional background that ups my affinity for providing elder care, yet 11 years after their move, I remain humbled by what the care facility provides. While being hands on with my mother who died of cancer was workable, neither my father with dementia nor I would be comfortable with my assistance with personal care. My mother needed monitoring of oxygen, radiation side effects, etc. I couldn’t do that; it was still a privilege to hold her hand while others did. I know this is individually determined, but I could not have properly attended to the 3 elders DH and I are responsible for in almost every other way at home. I assumed that going in; for us and our elders it was a realistic assessment. It takes as much flexibility to tend seniors as it does toddlers. Don’t feel like a failure if other resources can make it better for all.
So touched by all the efforts in motion here. Hope we are all as fortunate when it is our turn.
The clinical frailty scale mentioned above and referenced was helpful at helping H and I agree that my dad and mom are at different places on that scale. Dad is probably a 2 while mom is closer to a 5. This causes a bit of friction, but they do work it out. Their huge house is really too big for them, but am not sure how and when they will ever move. The ONE place they have added their name to live at is probably not affordable and the move will definitely take a toll.
Another reason I love the people who post here. Congratulations to @travelnut for appropriate use of the phrase “I am humbled,” possibly the first I have heard in 2015.
I had some responses put together, but my own concerns are at the forefront (well, my dad’s concerns that is…).
Any tips on Elder Planning books? We are now pretty sure he wants an advanced directive (ADR?) not just a living will, with me as health care agent. Confusing though.
Financially, someone, whether me or my one brother who will get POA if need be, needs to look at if he has enough liquid funds (probably not - I had to give him money recently). Maybe an annuity would make sense?