The whole thing is kind of untenable
Flower is on day two in her rehab / nursing home situation. I’m not sure why, but her son chose the county facility (maybe that is all that was available). I have a history with this institution — I used to go there a lot to do various kinds of volunteer work as a child and as a teen. It’s been torn down and completely remodeled and to be honest, it looks great. A little bit like a shopping mall in places, with lots of common areas to sit and talk, lots of offices for different services like banking or haircutting, cafés, etc. There is a big social / activities program in addition to the rehab stuff. They have individual meals and they don’t have to eat in a central area or cafeteria. They seem to be slightly understaffed, but I’ve read all their reporting literature and there have been no documented federal or state health care violations there in over three years. It’s not a luxury setting and I am sure there are options with more services or better decor or activities, but it seems like they are doing decently or more than that. This is not the kind of nursing home that my maternal grandmother lived in for two years before her death. Also, it’s reasonably close to our house, so that continued daily visits will be possible.
Flower is miserable, though, and I can’t avoid looking at the whole thing through dad’s eyes. If Flower is miserable, dad would be crushed by a place like this, unless his mind were so far gone that he didn’t completely understand what was going on. As exasperating as he can be (and it was another one of those days, and tomorrow will be another day of running all over creation, again) I just can’t see him in a place like this, even in this new, up to date, form. Every time I’m there I end up chewing over my family members’ respective end of life choices, as well as those of our neighbors. I just can’t imagine dad in a place like this. It keeps running through my mind like a refrain. I’m sure there’s some reason that our society organizes end of life the way we do, but at the moment I can’t put a positive spin on it.
Me + Richard Armitage 
some of it is down to change, people don’t like change and older people in particularly hate it and the fact that their autonomy is being slowly erroded.My OH Mum died 10 years ago suddenly in her late 70s leaving his Dad (who had Parkinsons) suddenly completely alone in a bungalow almost 200 miles away from us (my OH is only child too). We did best to get help in and we went up every 2-3 weeks for long weekends. However, it was just the change that affected him most. Sadly, he died just 24 hours ago-he was in a carehome the past 8 years because he needed 24 hour care as he became immobile and dementia crept in and we just couldn’t provide the care at our home. However, they were a fabulous place-even though it didn’t look amazing and some of the staff were just wonderful people.
I don’t know if that was at all useful!
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Thank you for sharing your story. I feel there is just no right answer. I think you just try to do the best you can and hope that is enough which it never really is. I feel if my dad passed first and we put our mom in a nursing home for the round the clock care she would die. She would not be able to emotionally handle the environment. There is a nursing home not 10 minutes from my parents’ home and my dad has commented numerous times there are ambulances coming all the time there when someone passes.
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I’m so sorry for your loss and I hope your family is swarming around to help you cope. I agree about change. One reason I moved back here a few years ago was my brother’s and my common perception that dad probably couldn’t handle a move to me at the time (Florida) in a vastly different environment.
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thanks Michele and Serv, the family thing is complicated but we have many very good friends and my chap and I pretty solid. Hope things settle x
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That’s good to hear that you have a support system and your chap around you. I’m glad that your husband’s dad had a supportive staff to assist him. I think that would make me feel a bit of relief that he was taken care, yeah know. It’s just never an easy situation no matter the circumstances.
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I seriously think my father in law stopped taking his pills he had ‘end stage heart failure ‘ he was 92 he had never spent more than one week in hospital in his entire life, he refused ‘care in the community ‘ which we have a lot of in the UK we had a staircase lift installed he was a big man he fell over and two strong men (paramedics) lifted him and left! I am 9 stone and my husband works full-time (only child)
He went on his mobility scooter to the Doctor (too independent
to take a taxi) on the Monday morning the receptionist took one look at him and called an ambulance
He died five days later from kidney failure.
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My sympathies. Your situation is similar to one I’ve been observing for a while — the one with my father’s friend who’s been in a nursing home for a while. I’d been hearing stories, etc., from my father’s friend’s disputes with his wife about coming home — but until recently I’d never met his wife. She’s about your weight and 5’4″ — she could never hope to lift him or even help him up.
For some people, you kind of wonder if they just make the calculation on pills and stop.
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My mom has been in a nursing home for seven years now. She had a stroke, has advanced breast cancer and dementia. Given the choice I certainly would have preferred she spend her last days in a different situation. But she requires far too much care for any one person, or even one family, to provide. If she were cognizant of her surroundings i’m Sure she would be miserable. But sadly sometimes the choice does come down to physical care being a priority over happiness.
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Oh, Cindy. My sympathies to you. And I totally get the issue of too much care for one person or a family. Your comment opens up something I’ve wondered a lot about lately — the axis between happiness and safety. Dad is often still confused about things here, but he’s basically physically safe and has a reasonable discernment of potential danger. If he didn’t there would be no way he could stay here — it would be impossible to fully dementia proof this house without an unreasonable amount of work. I admit that I’m worried in this regard. I’m dreading a situation in which he’s no longer safe mentally, but still in physically decent shape and what we would do in that situation.
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That was the point we reached with my mom. She was pretty good physically (before the stroke) but mentally was not capable of independence, even for a few hours. My brother and I had many discussions about happiness vs safety. In the end safety won out.
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Aside from your own worries, there are the external problems. I’ve talked about this with my brother — will I be blamed if dad experiences a household mishap? Even if it’s not my fault?
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Omg that is just heart breaking. My dad has to watch my mom like a hawk now taking her blood thinner med because he found a couple in the trash by her side of their bed a few weeks ago. He got upset with her and she yelled right back at him denying she had thrown them away. He just throws his hands up. I feel utterly helpless trying to comfort him and give moral support to my mom.
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Your father has my full sympathies — the whole pill routine is the worst. I have to leave dad alone for a few hours on T / TH and it’s actually good for him not to be supervised all the time, but Tuesday he took his blood thinner seven hours early. Uch. So much for “keep the amount in the bloodstream relatively consistent at all times”.
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Yeah I was talking to my dad on the phone last night for over 2 hours first to congrat him on his Yankees (baseball) team winning sudden death first round of play-offs but then we veered into politics (DT of course) and mom. My dad is retired Army-30 years and when I was growing up with my sis and bro my dad resembled Robert Duvall in Great Santini movie. We never had to line up for inspection but in public we had to be still like “quiet as a mouse”. I wish my bro would do that with my nieces. Anyway I always went to our mom for everything from scrapes to school issues. Now my dad and I are best friends- I can potty mouth with him, give him advice and he vents to me about his tax business, clients, DT, our Dallas Cowboys, Yankees, etc.. My mom and I have a much more surface relationship she tells me what the kitties are doing and how her knee is and the conversation is much much shorter. I have mixed feelings about this bec I feel I’m not being all daughter for her. I can’t approach her about the meds bec she will think my dad “ratted her out” and launch into him. My dad said last night my mom is “no better but no worse” and he thinks her 90th b day which is on Thanksgiving this year will be hard on her-facing mortality which is difficult for most people. I appreciate these stories disclosed here bec it really helps me think about a lot of my family dynamics.
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This whole battle of treating your parents as autonomous individuals even when you think it might be better not to is really a struggle, and the politics of knowing when / if to interfere.
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Yes I think you hit the nail on the head there. My father lives for his autonomy ie driving is a good example of that. That mobility of him getting out of the house for his IHOP breakfast or grocery shopping or meeting clients is so important to him. My mom never really liked to drive. She had to drive our huge 1972 Oldsmobile Tornado which was a beast and this 5’2 inch woman sitting on a pillow to look over the steering wheel dinged the car many a time. So for her I think losing some autonomy over her body (arthritis) and her mind (forgetting what she ate or what day it is) are more upsetting to her. For me it’s more guilt and frustration w myself should I do more but then what more can I do?
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My mom spent her last few weeks in the Veterans hospital – she needed around the clock care and didn’t fuss about being there. The staff treated her wonderfully – anything she wanted or needed, they did it. She had COPD from smoking 60+ years & her lungs were shot.
Daddy passed away at home, in his room, where he wanted to be. He’d had his heart valve replaced the year before & was diabetic. When he finally woke up after surgery – about a month, due to a medically-induced coma – he had to learn to walk again. We were fortunate enough to get a private nurse who came every day to stay with him. At night, my brothers, sister & oldest nephew took turns staying with him. I live over 5 hours away & couldn’t. The last weekend he was alive, everyone in our family who could be there was there (only 1 niece stuck in Michigan and 1 nephew on deployment missed it). It’s like we all sensed he was going. He passed away in his sleep the next Wednesday.
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That was the older ideal of the “good death” — people should die surrounded by family and friends. Seems very rare — I’m glad you were able to be there.
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Oh, I so get you! My maternal aunt is currently hospitalized with Guillain Barre Syndrome and will be leaving soon for rehab after receiving IVIG infusions for a week. My own parents are relatively healthy(thank God) in their early 80s, but I can’t help thinking about this while I watch my neighbor with one parent in hospice and one in an assisted living facility. Caring for aging parents with dignity is so difficult. Definitely hard to find a silver lining here at times. Longer years granted doesn’t automatically translate to better quality of life. Heartbreaking, really.
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[btw the reason your comments end up in moderation is that you seem to be using your real name, so I end up having to edit them in order to post. If you want to switch to your real name, let me know and I will stop the editing]
It seems like an ailing parent is just more than even a team of kids can handle. I do get that it’s probably more efficient to have a team of people / professionals looking after a group of elderly in lots of ways, and also that it’s probably better for the elderly person in terms of safety and better for the family in terms of emotion, particularly as people live longer and their health issues get more complicated. Maybe what I’m questioning is why people live so long now past the point at which society considers them useful. What are we doing wrong?
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Another issue my brother and i discuss! Has medicine and medical care advanced so far that the human body is being forced to live past its natural lifespan? Maybe the body was only designed ( by g-d or evolution or whatever you believe) to last a finite number of years but, through medical care, we are forcing it to continue living longer ?
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Well, eventually your telomeres wear out and your cells stop dividing. I don’t think scientists have a good idea of what a natural lifespan is yet — but there’s a real problem if society can’t find a use for people who are (say) in their 70s.
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Maybe what I’m questioning is why people live so long now past the point at which society considers them useful. What are we doing wrong?
I’ve been studying this since I turned 60 five years back, and although I’ve reached some very simple and straightforward conclusions, they are so different than the modern conventional wisdom about that that it is usually more confusing than helpful, sometimes even hurtful, to say what I think. Perhaps at this point in time it’s a journey we each need to take on our own.
I’ve found very little that confronts the matter with practicality and common sense, but it does seem to be gaining visibility so maybe there’ll be more in the near future. The two best books I’ve read on the topic are Being Mortal by Atul Gawande (great writer, and very humble for a doctor), and more recently At peace : choosing a good death after a long life by Samuel Harrington. And even these are best used to clarify the relevant questions in your own mind—you’ll still need to piece together your own answers, a painful and tedious process.
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It’s a really hot button topic and it has surprised me what consternation it calls forth when I say to people, I am not concerned with living a long life. Then they say, well, it’s because you don’t have kids, and I smile, and think, no, it’s because I watched the deaths of three of my four grandparents up close and then my mother’s, and every minute I spent watching my mother suffer made me determined to refuse treatment for all but the most minor cancers (we have a weird cancer cluster on my mother’s side of the family). I’m hoping that the generational experiences of the boomers will make it easier for us Xers — because we are not at all prepared for the wave of deaths coming at us now, and the system for dealing with the elderly dying is at a breaking point already in my perception. I liked Gawande’s first book, quite a while ago now — will check out Being Mortal now.
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My dad spent the last 3 years of his life in care. He had Parkinson’s and some dementia (not full-out, until the end he did recognize us, his family). First he was in a hospital after a collapse, then in a rehab facility and when it became clear that rehab would never work and my mother couldn’t care for him on her own at home anymore (and we brothers and sisters couldn’t devote the necessary time either as we all have to work), he went into a home. We made his room very cosy as if it was a room at home, with books surrounding him even though he couldn’t focus on reading them anymore. He had nice views to green trees, the care was excellent, the staff were friendly, the living and communal quarters were nice, there were activities (excursions, concerts, markets, crafts, etc.) and there was a pastor he could talk theology with. Every day he had visitors, whether it was my mom (most days) or we siblings. We knew he was well-cared for and well-liked by the staff. Once he was used to the place, it was alright, but in his heart I think he always wanted to go home… I always found that difficult to deal with, that though he was content enough, he would have preferred being at home with my mother. That and him not being able to read anymore were the greatest end-of-life heartbreaks.
I have to say that before he was in such a home I could not imagine it all for him either. Once there, it turned out to be OK and was a good enough alternative to living at home. Not perfect, as it’s not home and that will always be heartbreaking, but still alright.
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One thing I’ve been thinking in the interval since Flower has been there is that it would actually not be a bad place for me to retire. They have pleasant rooms, you can bring your own stuff, they have interesting programs, etc., etc. If I had to move in there now, as long as I could keep reading and learning, and had wifi access, I wouldn’t really have much trouble, I don’t think, beyond getting used to the loss of independence. My dad is different. He likes being outside, fixing things, fishing, hunting, driving is really emotionally important to him, going where he likes, etc., etc. I think he will be okay here once he gets over his resistance on the driving theme, because he has all his tools, we have a huge yard, there are animals to watch and so on. But it would be hard for him in a situation like that.
On the whole, though, I agree that what’s lost is more important in the end than the surroundings per se.
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