All those places aren’t home

October was a rough month here. The main issue was the drama over the clothes washer, which threatened to blow up our living arrangements. After a year of being abused, the poor thing gave up the ghost. The replacement was an inch deeper than the space built for it; dad’s insistence on curing this problem himself led to unnecessary punctures in the drywall of the laundry room, the tearup of the platform the washer and dyer were on, and the destabilization of the dryer (important to know: it vents to the outside of the house). He also refused to have a finish carpenter friend of ours help him when it became clear he was in over his head. We were three weeks without a washer and everything I tried to do to ameliorate the situation just intensified his fixation, until Heavy Lifter lost it (rare for him) and intervened. This problem was coupled with a knockdown, drag out fight over the coming of the senior helper at 6 a.m. on every day I left for work. At the end of it all, the stress was enough to move me onto the “maybe he should go to assisted living” and HL onto the “he definitely should go to assisted living” pages. The GCM has thought this for a while already. She pointed out that if I am going to work every weekday in spring, dad’s inability to accommodate himself to the senior helper will more than double the stress of leaving the house, and she pointed out that not being able to stop dad from doing things could become deadly, if, for instance, the thing he got fixated on was snow removal (no joke in this part of the world).

We did get a washer with a child lock. Should have done this months ago. And that same week, I went to a workshop on responding to people with dementia, and the speaker‘s slogan was “people living with dementia are doing the best they can.” OK, she also apparently thinks there’s something beautiful about dementia, which I frankly think is a ridiculous thing to say to caregivers. However, I took her point about the sufferer not being able to change their behavior. Which made me think that this wasn’t (just) stubbornness or a power struggle — that maybe dad genuinely sees our this situation in positive or at least acceptable terms.

The GCM came and we had a meeting to discuss assisted living with dad. It was revealing. I realized while listening to dad talk about his perception of our situation that I’ve been trying to avoid a crisis of the sort we had on the day he sliced his arm up — that he would eventually hurt himself badly if left unsupervised, and we could set up safeguards against this. But that may not be the crisis coming our way: it may in fact be that his behaviors create a situation that is emotionally intolerable for me — for instance, because I have to leave, don’t have backup, and can’t control what house renovations he will decided are absolutely necessary, and both dread coming home and have to come home — and that this problem may be the trigger for assisted living. During the meeting, he seemed wholly oblivious to that possibility. He agreed that we had been fighting a lot, but he did not appear to see my emotional state as a factor that needed to be considered in decisionmaking. Which confirmed both what the neuropsych eval had said (lowered empathy) and what the dementia speaker had been saying (he believes he is doing his best).

One of our non-negotiables from that meeting (besides: no snowplowing) was that dad visit a few assisted living places (scouted for him by the GCM — she also took him to look) and getting on a waiting list for at least one of them. So he did that. And then HL and I visited them together, afterwards.

It’s probably clear (to US readers at least) from the way I’ve been dealing with dad’s problems that dad is not poor. He has money to pay the GCM, the senior helpers, for a new washer when the old one breaks, for more expensive blood thinners, and so on. Given how rough this has been for us, and given things I’ve heard in the support group I’ve been going to, I sometimes can’t imagine how people with fewer resources deal. I’m grateful, in retrospect, for dad’s good job, for my mother’s frugality and for the bull markets that persisted during most of my parents’ lives (it won’t be this way for me, when I’m asking the same questions). But in any case, when we look at the assisted living facilities and the possibilities open to him, while we’re not ignoring price, it’s also not the primary factor in the decision.

All of the places have spacious, accessible, safety-oriented and well-appointed apartments or rooms with a desirable level of privacy. Dad could move in some of his own furniture. They’re clean. The apartments have up to date appliances (as a friend pointed out to me recently, dad could regain control of his own washer and fixing it would be someone else’s problem). They are all pleasantly situated; in some of them, we could plant dad’s favorite weathervane right outside his window for him to see. They are beautifully landscaped with plenty of opportunity for strolling; one of them even has a pond for fishing. They all have well-organized activity programs and daily group transportation to let people get out and/or run errands (library, shopping, restaurants, etc.). None of them show up on the websites that track health and safety violations. They are owned and run by nursing professionals, not by large corporations. All of them have scratch kitchens and they also all request “favorite family recipes” of new residents and offer to add up to three of them to their regular rotation. This offer is probably less onerous around here than it would be in a more ethnically diverse part of the country — I’d guess that the top three favorite dishes of most people at these facilities are Wisconsin chili, fried fish, and bratwurst. (And anything with cheese on it.) All of them also have more intensive facilities attached for if / when dad needed more attention.

I’d be totally okay with him moving into any of these places from a wellness and safety standpoint. It’s also somewhat possible that his eating would improve with a nutritionist looking out for him full time, and I think quite likely that his mood might improve with all the additional sociability that he doesn’t have at home. It’s clear that these are not the “nursing homes” of our youth; the facility smell that I remember from childhood is absent and the residents seem alert and engaged with the world. No elderly people dozing in wheelchairs, waiting to die — the way it seemed to me when I was a girl — although those people must be somewhere.

But if it’s true that all these places are irreproachable, at the same time, as HL said to me after the last visit, with a certain anguish in his tone, none of them are home. None have dad’s workshop, none have our fifty years of tree planting, none have the deer that have been sheltered in the northwest corner of the lot, or the lawn or the view. None have the corner bedroom where the sun wakes him up, none have the wild turkeys that come right up to the window of the breakfast nook.

HL — who had been a much stronger proponent of assisted living than I was — asked me if I could hack it a little longer. I said on the days when everything is fine, I think there’ll be no problem. It’s just that there’s so much disruption and so much anxiety associated with it and so much power struggle. So much responsibility and so little autonomy. HL pledged to me that he will work to get everyone on the plan (including himself, but especially dad). For the last ten days, we have had Nemenda in our lives. I don’t know if it’s the cause (especially because, if I understand correctly, dad doesn’t belong to the diagnostic target audience), but there have been no arguments about me working or leaving since he’s been taking it.

It’s always a question of what you can take, right? Our family’s socialization was always to act as if no emotional burden was too large to bear where a family member is concerned. Everyone keeps saying he should go to assisted living to avert a crisis. Rationally that is what I want, too. Emotionally, though, I don’t know if either NL or I have made it there, yet. I’m still torn. I don’t know if I can take a spring semester when every morning starts off with a fight. Or maybe it’s that I know that I can’t. What emotional burden is too much to bear? Or do we just wait until dad’s misuse of a power tool becomes his undoing, or until he gets hypothermia from trying to plow snow when he shouldn’t? But I continue to be convinced by the point that this is dad’s home, and he shouldn’t have to leave it if there is any other workable solution. So I guess that’s where we are. Right now.

~ by Servetus on November 11, 2019.

33 Responses to “All those places aren’t home”

  1. It doesn’t get easier, that’s the one thing that’s clear…. I have to say that, while I understand the ideal of caring for an older loved one at home, since you have to work & your dad doesn’t clearly accept the senior helper (Nemenda notwithstanding), his safety really would seem primary over that desire. Especially re: your state of mind as his primary guardian. Your brother is your primary support, & seems to really try, but YOU are really the daily “heavy lifter”. I really feel your safety is important here as well. Even if leaving in the morning has improved, you face continuing anxiety about what crises you will find when you get home, & what it will take for you to fix them. If you have great assisted living options that are financially doable, I can’t see how he and you won’t both be better off with him in a place where he’s safely cared for by people for whom it’s their job, rather than an emotional tightrope with changes from the past, crises in the present, & fears for the future. He won’t understand that, & that will continue to be the hardest part. It has to be the hardest to deal with being now the parent instead of the child, & still conveying respect when it’s not seen as such. I’m feeling for you in all this, S, & hope it will work out soon in such a way that all 3 of you are at peace with the timing.

    Liked by 2 people

    • Thanks for your good wishes!

      This is an abbreviated account of what happened with the washer, but the thing that pushed HL over the edge initially was an element of something that I deal with every day. I pointed this out to him, and it made him think. I thought it was interesting in the meeting with the GCM that as I was moving toward being more supportive of assisted living, HL got less supportive. I think because he doesn’t live with this situation on a day to day basis he doesn’t think about its mechanics that much. But even so: he’s confronted with the problems in intensified form as I turn to him. We all have our ways of dealing.

      And yeah — assisted living seems like the rational thing. It’s just that all along, every since we’ve been confronting these issues with dad — so, since the summer of 2018 — people have been telling us “_____ will improve your dad’s situation.” I encounter this kind of statement all the time from the mundane to the universal. The cognitive therapist said “if he just does these brain games ….” Well, he wouldn’t do them. The physical therapist recommended an attachment for his walker that would let him balance better if he wanted to carry something. I got it for him, but he would not use it. The GCM said, “we can get a cleaner who will also be an interactive support for him and take him places so he doesn’t feel trapped at home.” Well, he doesn’t like that, either. I went to a cooking class this weekend on the “brain diet” and it was interesting, but dad will never eat most of that stuff, and when I asked the instructor about suggestions for integrating the Mediterranean diet into the meals of a man who’s eaten dairy and red meat every day of his life for 70+ years, it was like no one ever asked her that question before. (Which, given the general Midwestern diet around here, surprised me a bit — it can’t be the first time she was asked these things.) So I’m really skeptical when people tell me that there’s a solution: because none of these solutions really work for dad specifically. With assisted living I’m particularly concerned that the social activities they have planned are nothing dad would ever do in his real life and I don’t see him suddenly changing just because he moves a few miles away. Dad has never fit into the mold of polite society anyway so that’s nothing new. Caelum non animum mutant and all that.

      But the real problem is that all of these experts (and I don’t doubt their authority to speak) have way more notional or actual control over the situations they describe than I have (or am willing to take). The nutritionist cooks for an assisted living facility — she decides what to make, she cooks it, the people living there eat it (or not). I don’t really have that luxury as I’m sitting across the the table from the person who’s eating the food (or not). They live in an ideal world that doesn’t really correspond to my reality with dad. I suppose you could argue that I am too close to him, and that the expectation / his expectation that he be catered to is unreasonable. At the same time, it’s hard to see how operant condition / “consequences” thinking can really affect the behavior of someone whose ability to learn is so diminished. He doesn’t / can’t fit into the norm; maybe now more than ever he’s going to be who he is and he is fortunate, maybe, that he has me to try to figure him out. It’s true that he’s a person “without history” to someone who cares for him at an assisted living facility, but as a historian it’s hard for me to believe that he can really be treated better by someone who has no history with him.

      So we do spend a lot of time trying to figure out what dad will be able to cope with and ideally like (HL is dealing with arranging and mitigating the perils of the annual deer hunting week right now and I do not envy him) and that takes more work. Maybe it’s the case that given the parameters of his situation now, nothing will please dad, and so it really doesn’t matter what we do (it kind of seemed that way earlier this month). If he really can’t tolerate what i see as a minimal intrusion by the senior helper into our lives and schedules, I could just quit working, period, and stay home all the time, too. That would make dad happier and drive me insane. So if he’s not happy at home with a senior helper, and he’s not happy at assisted living, well, assisted living is 4x the price of the senior helper. The question is what price my sanity, I suppose.

      HL and I are pretty much on the same page that dad’s taking up more than his share of our combined energies at the moment (HL has a lot going on in his personal life that’s of central importance to his own future, and in general I want him to focus on that stuff and not get too wrapped up in dealing with problems that will never resolve). So I think in the end the decision will come down to how I feel, and I continue not to know how to react.

      Anyway — thanks for reading.

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  2. It makes sense, you’re really the one who’s the expert on him and his situation, and it could cut both ways as to whether changes help or not. When all else fails, I think you get in touch with your gut, it doesn’t lie.

    I agree that you just staying home to take care of him won’t be healthy for you. And from what I’ve already been through with my inlaws, it’s unfortunately true that it’s tough for an older person with serious cognitive and/or health deficits to be happy, no matter what you do. The cognitive problems are harder on the caretaker, like you, who’s really trying to do the right thing, because it will never be good enough from the loved one’s perspective – the understanding just isn’t there. Probably the biggest plus with assisted living is the more controlled environment for him, and the relief for you of the relentless daily vigilance and chores.

    It’s easy for me or anyone to say “don’t feel guilty about” letting him go to assisted living- it’s letting go of a dream in a way, and he will not appreciate it, especially initially. But the decision is mostly about making sure he’s safe. With both my inlaws, things happened that made it clear they had to have that level of care/ supervision. Until something like that happens, I understand having that need to see yourself in the future knowing that whatever was the best you had to offer him, you did it. And in that case too, what’s best for you is just as important as what’s best for him- you know, putting on your own oxygen mask first etc. Hugs ❤

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    • controlled environment: it’s interesting that one of the things dad complains about most w/r/t the senior helper is that she’s on a schedule — comes at a specific time, leaves at a specific time, takes him to Flower at a specific time — over which he can’t have any control. Whereas the GCM says his problem isn’t that he is too scheduled, it’s that he’s not scheduled enough. I really don’t know how to think about it.

      You’re right about the question of something happening that makes it clear that the situation has to change. I just don’t know if that ends up being something that happens to me, if that makes any sense.

      Hugs back!

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  3. Taking your feelings about giving up work and becoming a full time carer ( which I think we would all rise up and counsel you not to, if that became your plan) out of the equation do you think that would make dad happier? Because from what you have been sharing over the last few months, I think that’s unlikely. Whenever you have had to put boundaries down for safety reasons it seems to have caused distress for him, the recent washing machine incident being an example. Added to that is your lifelong tricky relationship which must impact on both sides. You have detailed why assisted living would not suit your dad but I’m wondering if you have a vision of what would suit him? It sounds like you are saying that living with you as a full time carer, with no outside help and no structure beyond his wants would make him happier but I question that. It seems to me that he would quickly find that situation intolerable as well.

    You state that assisted living is not ‘home’ but I’m wondering if anything feels like home to your dad now ( or in the near future). It sounds like he is suffering quite a high level of stress the moment things don’t go his way and realistically they aren’t going to go his way much of the time. If he goes into assisted living there will inevitably be difficulties but it sounds like you have researched well to find places with good ethical standards. Add to that that the staff are not emotionally involved and can go home at the end of the shift . You’ve said you can’t understand how someone with no history could look after him as well as you – I’m suggesting that because they have no history they can do as well, if not better.

    Added to that I think you have acknowledged this can’t go on. You are completely burnt out and exhausted. It seems like only a matter of time before there is a crisis from which neither of you emerge intact. I normally try to refrain from offering advice but I really think you need to consider assisted living sooner rather than later for everyone sake.

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    • What you’re saying is more or less what the GCM would say 🙂

      All I can say is that before there was a senior helper in our lives, we didn’t fight about them. (Not that there weren’t other fights.) And although I have mixed feelings about that for various reasons, I really couldn’t leave him alone for 13 hours at a time. It would be dangerous. So it has to be. Part of the problem for him is the fact that those days are fairly rigidly scheduled and can’t be significantly changed once they are on the calendar. For example, if his brother comes and wants to take him out to lunch on a senior helper day, he can’t do that unless we know 48 hours ahead of time. (This really frustrates me but this is how it is when one employs people and the agency we use does not pay them if they don’t do the care, although I’d be willing to pay the full price to reserve the person’s time. I need to keep the same person in place as much as possible and that means not canceling so that they lose hours / money and can’t replace it.) Part of the reason he prefers me to be home is that if I am home, he can get me to do stuff or take him places. I try to make it so that he doesn’t have to wait more than 24 hours for something he wants and the senior helper is part of that plan. But what he really wants is to drive. Short of that, he wants me at his beck and call. The senior helper system means that he isn’t in charge of every decision about where he is anymore. So he fights it, even though it’s really a huge convenience for me and not all that restrictive for him. But because his time perception is shorted out, he doesn’t get that. If he wants to go to the hardware store on Monday night and I say, can you wait and do that with the senior helper, because I have to grade, he gets angry. So yeah — if were here, he would have more control over his schedule at least.

      The dadsitter is a friend of his, so him coming over could be seen as his friend coming over to chat, which made it okay for dad, apparently. However, I can’t have a situation where the dadsitter becomes his alcohol supplier. And I have asked and most of dad’s friends, because they are farmers and don’t have retirement funds, are only semi-retired, i.e., they don’t want to or can’t schedule themselves to come here and sit. To be fair, he goes to breakfast at the diner with them every morning, and one of the picks him up and one of them returns him home, so I can’t say that they aren’t stepping up. They are.

      However, I honestly don’t think staff are more qualified to care for dad than I am. This isn’t their fault — but no one knows or cares as much as I do. I’m probably going to sound over-involved here, but I can accept that label. Dad both has great social skills (the neuropsych doctor told me that it was hard to diagnose his specific problems without resort to more specialized testing, because he is very high functioning) and is not a reliable reporter about himself (hence, the medical incapacitation). So, for instance, he will tell you that he will eat anything, he doesn’t care what he eats as long as he doesn’t have to make it. This is true in the sense that he will eat two bites of something he doesn’t like. I saw how this went at Flower’s rehab — they cooked a meal, usually there were two options of a main dish (like you could have pork chop, potatoes and a vegetable, or you could have spaghetti and meatballs, and they had a choice of desserts, usually ice cream and then something baked). If you didn’t like what they were making, you could have a peanut butter sandwich, a turkey sandwich or a tuna salad sandwich, with choice of three different breads as a substitution, all of which they would also make for you. You could also have a fridge in your room and fill it with whatever you wanted. It sounds optimal — but in a situation like that it’s unlikely dad would eat much. If he didn’t like the main dish, they’d offer to make him a sandwich and he wouldn’t want a sandwich (“don’t go to the trouble,” he’d say) and he’d possibly nibble at stuff in the fridge, or maybe not, or eat only grapes and not any protein for three days. At this point, we really can’t risk him losing any more weight, and no one working in a facility is going to keep tabs on that in any detailed way. They’ll notice when they weigh him periodically but they’re not going to be checking to make sure he gets 1800 calories every day and coax him into eating more if he doesn’t.

      I regularly find when I am speaking with the professionals involved in his care that they’ve forgotten crucial information. (Again, not their fault — they have a lot of people to keep track of, and not everyone has the memory I have.) I know with the senior helpers that it’s apparently impossible for them to remember not to do things that I’ve asked them not to do (i.e., don’t move things around that are on the countertops, they are there because dad literally has no short-term memory anymore) and I have to repeat these instructions all the time. In a facility they have a group of people to worry about, which I don’t have, and I have dad’s whole medical history and list of preferences, etc. in my brain.

      So yeah, sorry — forgive me, but I don’t think people with no history with him can keep track of everything I know and have learned about him. They don’t know what issues trigger his fixations (don’t discuss driving! don’t raise the topic of mops! don’t get between him and a machine) and even if they did, they wouldn’t remember as they have too many people to be concerned about. I guess in the end they would bear the consequences for that in place of me — but that doesn’t mean that they would provide better care. The care would be less good — they would just shrug and go home. Again, I’m not casting aspersions on them. For me, taking care of dad is a principled, ethical commitment. For them, it’s a job — one they may or may not feel an ethical commitment to. (I teach a lot of nurses now, so i see how that goes.) Everyone around here says (and I believe it) that if you have a relative in a facility, you need to go check up on them as much as possible.

      I don’t know what to do. I don’t think I can continue this way, at least not infinitely. But until there’s some concrete crisis I don’t think i can change it, either. On the other hand, in the support group I go to there are many people who have been in situations like mine, with many fewer resources, for up to a decade, and they manage it. So hopefully I can learn to manage it too, at least until the current situation is really absolutely impossible. What i learned, anyway, from this episode, is that the crisis could be mine and not his.

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  4. […] than twelve hours, even with senior helper support, and so I returned them. A month later, with the washing machine drama behind us, however, the GCM pointed out to me that we need to practice separations and following […]

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  5. First no matter what choice is made will be hard. In the end your family has to what is best for your family. It would be easier if your dad made the decision to move into Assisted Living A/L, then it would be his choice. I just don’t see that happening because he no longer can see that his behavior is a problem. You are right about A/L and Skilled Nursing Facilities SNF being different from your childhoods. My parental grandpa put himself in one back in 1972 due to being blind, he lived with us for a while but didn’t want my mom to have undue stress with him living with and checked himself in the local nursing home. For 15 years till his death I would go with my parents and it was not bad but sure different from today (he was able to smoke his pipe inside the place). My dad would agree to go to the same place 20 years later for rehab and never come out, his choice to go and he was unable to get better as the Parkinsons would rob more and more of him. i can see that if my aunt (my moms sister) dies before my uncle their child will have a problem caring for him. With the closes being 2 hours away, 2 in NM and 1 in Texas they might what me to help and I will not. His was abusive when he was younger stopped when his youngest a daughter was born but since the stroke has become abusive again. My aunt will never say but there oldest son told me. He can be so confused and think everyone else is. Just watching what she is going though I can understand your day to day struggles.

    What ever you do don’t quit work, you need to time to be out of the house. In fact my 76 year old aunt still works a bit cleaning houses and cabins just to get out of the house. I also know another lady who’s husband had a stroke and she keep working to get out of the house and told that she keep the Sirus radio in her car they bought last year just to listen to the comedy channel so she could have a laugh. She works at a school and could not wait to get back to work in August. Her husband has since pasted away and I have not seen her to find out how she is doing. I do know listening to her, my aunt and you that care giver burn out is real and you really need some type of support group.

    You are in my thoughts and prayers.

    Liked by 1 person

    • We only had one grandparent in a nursing home, but visited many other relatives and friends over the years and in youth group and scouts we went often as well. They are much nicer now (although I wonder how long that will last, with the “silver tsunami” coming our way — so many more people will be living in this kind of setting).

      With the incapacitation, I guess we could move him into AL against his will, but I really want to avoid that. The grandmother I had in a nursing home was kind of there against her will (complicated situation) and it was horrible — permanently changed relationships she had that should have been supportive ones. With dad, it would be like him just to quit eating if we did something like that. One reason I’m torn is that all the dementia advice says the move is harder on the person the later it occurs. If it were just me, making decisions for myself in his situation, I’d move now to save the difficulty, but preparation hss never been a feature of dad’s personality.

      Work is really essential — even with the inevitable frustrations of teaching and grading I feel better when I’ve been at work a whole day. Apart from other things (health insurance, retirement, etc.) which are also necessary.

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  6. I know it is hard to let go, but the assisted living staff are professionals. They will track your father’s food intake and weight and health and everyone will adjust. Really. And I think he will have much less stress then at home, where he used to control everything and now can’t. In assisted living, he will have a smaller space but it will be all his. He won’t have power struggles with you or with his overwhelmed self. You can visit often, daily even, but then breathe much easier when you are not there. Please do yourself and your father a favor and do transition your father to assisted living. He will still be in good hands, not as good as yours, but good enough. And you can save yourself.

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    • This is the kind of comment that really isn’t very helpful, just so you know. It’s like you didn’t even read what I wrote.

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  7. The washing machine incident certainly demonstrates how fixated and unaware of consequences your dad can get. How frustrating for everyone, including him, who is so aware that he should know how to do all of this and yet can’t. My dad before he died had lung cancer and his brain was not getting enough oxygen. He knew he should be able to work on the taxes like he always had done and yet he couldn’t and he couldn’t accept that he couldn’t. It was very frustrating for him and hard for us to watch.

    All of this has been so stressful for you too, having to cope with it day in and day out, and yet wanting to make things go well for him. I’m really glad to hear that you are going to a support group and other educational opportunities, even if they may only give you one idea or insight. You may also want to have a therapist just for you to talk things out on a regular basis, if you don’t already.

    It seems, though, that there are at least a few positive things (in addition to having a washer with a lock!). The new medication sounds like maybe it has evened out your dad’s moods and amenability. And I think it’s a really big step that your dad was willing to go and look at the assisted living facilities and get himself onto a waiting list. It’s good, too, that there are places that, while they are not home, at least will allow some of the comforts of home to be put in place and will provide some social outlets, if and when the time comes.

    I’m wondering if when you go back to work full-time, there would be someone you could hire to be there all day, every day during the week, so that you are paying them full-time to be in the house and yet your dad can come and go if plans change. Does it require specialized skills? Or could you advertise for someone who is more like a caregiver/companion? Of course it would have to be someone he will enjoy having around.

    Take care of yourself. Sending hugs.

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    • We’re headed for a battle over the next taxes, too. I don’t know if I can do that again.

      And I walked out of the house this morning without a fight. I don’t want to confuse correlation and causation but it seems like the new med is working. What puzzles me is that it supposedly only has noticeable effects on people with severe Alzheimers (which acc to the neuropsych eval, dad does NOT have) and it is only supposed to affect symptoms. I read a new study on anger in dementia cases and it correlates it strongly to anxiety. So I don’t know if this new thing is maybe working like an anti-anxiety med? Or maybe it’s that dad just finally decided to get with the program.

      You and I are kind of thinking the same thing re: someone just hanging out at home, not necessarily a senior helper. The advantage to the senior helper is that they are bonded and covered for liability, etc., and have some training. The people they’ve sent us have generally been pretty good as well, but there’s a lot of turnover. However, the scheduling thing is an issue and it bugs the hell out of me that we pay $23 an hour and the helper only gets $14/hour gross pay. And dad doesn’t really need the specialized care — he just needs someone to make sure he’s still alive and not doing something dangerous, and to drive him places. I’ve been thinking that we get a regular cleaner (the senior helpers only do light housekeeping), and then hire someone to just hang out there most of the time. If I paid them directly I coul guarantee them so much a week and then not feel guilty if we sent them home, because we would have paid the agreed-upon sum. The problem is finding the person — and that’s really what we get from the senior helpers. The agency screens the people.

      Thanks for the support.

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      • Correlation vs causation always makes me think back to the example I learned in school — that people with shoe boxes in their closets tend to have twins. Lol.

        I’m glad your morning was better. The Wikipedia article you linked to actually mentioned that improvements in mood and behaviour had been seen, so maybe it is having an impact.

        Yeah, any kind of an agency takes a big cut from the worker, unfortunately. I think if you can find a helper and a cleaner, that might make sense. I suppose the agency doesn’t screen for permanent placements for a fee…

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        • If I understand correctly, the only clinically sound evidence is that the improvements are seen in people with moderate to severe Alzheimers Disease and dad has vascular dementia. That said, there’s also no evidence that it doesn’t help people with vascular dementia — just hasn’t been studied in any detail. There are a lot of off-diagnosis drugs prescribed in the US on the off chance they will help, and dad didn’t tolerate the first drug (a cholinesterase inhibitor).

          I think the agency is very interested in making the $10/hour off the worker indefinitely. And I can see there being attractions for the worker, too — tax withholding and liability insurance coverage chief among them.

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  8. I feel for you, I really do. Reading through your posts brings back memories of what I went through with my mom. She passed in June of this year and I haven’t yet been able to find the good memories. Perhaps if she had gone to a nursing home she would have been happier and I could have gone back to being a daughter and those happier memories would resurface. Would your dad consider going to senior daycare? We have some here that would pick him up at a set time each day and then either return him at a set time o4 you could pick him up. That might reduce your anxiety of what you’re coming home to and give him socialization time.

    Liked by 1 person

    • There is senior daycare available and yeah, they do transportation, too. And it’s free! Honestly, I can’t say that we’re really lacking for resources. But so far he’s refused even going to the senior center to play cards a few times a week, so I suspect a whole day (I’m gone 13 hours) would not work for him (in his view).

      It was interesting that the GCM brought this up in the meeting with him — i.e., if you would go to assisted living it would be easier on your kids, they’d be able to be your kids again and not your caretakers — and no reaction from him.

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  9. Those assisted living places sound very good, but I can understand you’re hesitant. I don’t even dare suggest something like that to my Dad at the moment, but the time might come when I have to. Snow removal – big issue here, too. It’s the one thing that terrifies me about winter. I’m always afraid Dad will get up in the middle of the night and start shovelling.
    I will talk to our doctor about Nemenda. My Dad is becoming depressive and the stuff the doctor prescribed doesn’t make the slightest difference.
    I hope things sort themselves out for you!

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    • I think the generic name is memantine. I really don’t know that much about it other than that it works on NMDA receptors — the previous one we tried was called Aricept (a cholinesterase inhibitor) and it just made dad sleep 20 hours a day. Which was calming for me, but that’s not the outcome we want for dad. Aricept comes as a patch, which could be convenient depending on your circumstances.

      Liked by 1 person

  10. You are really placed between a rock and a hard place right now 😦
    Pass bitte auf dich auf und fühl dich mal ganz fest umarmt!

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    • Thanks.

      If he does really have vascular dementia, this phase is supposed to last 2-3 years. We’re already a year into it. So whatever happens something will change. One way or another …

      Liked by 1 person

  11. I started to cry when I read your description of “home,” and the emotional difficulty you and your brother are having right now. When you have time, send me an email and I will either call you or share with you my thoughts about this in writing. We were feeling the same way about Mom leaving our house, which was purchased in 1967, and which she sold and left in 2012. It was really hard, and the story is a bit long (plus I have a terrible headache, likely brought on by all the snow we just got).

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  12. It’s so frustrating reading about your struggles with your dad. You have tried so many solutions that turn out to be deal breakers for him. He doesn’t seem ok with anything except doing things the way he used to. Impossible choices for all of you. I am so sorry your family’s has to go through this. He is so lucky to have a daughter like you that cares so much for his health and happiness. Please save some of that care for yourself. ❤️ Kathy

    Liked by 2 people

    • I really want assisted living to be the last resort, if it comes to that. On the upside — we’ve now had two weeks with no fights about the senior helper / me leaving for work. If we can make it through deer hunting without troubles, then it’s only three weeks left of school …. I’m parceling my life out in weeks at the moment. But it’s still better right now than it was in September.

      Liked by 2 people

  13. What Kathy said, without all my personal, parental angst added in. Love you and how hard you try, every damn day.

    Liked by 1 person

  14. I’m so sorry, Servetus! This is so tough! Such decisions are never easy. I know when my dad went to assisted living, it was a decision that was made by doctors because he really could not have lived at home anymore. Even with the decision made by others, it was still really tough! It was never easy for my mom or us kids, even though we did everything we could to support him, visiting daily and such. This is a heartbreaking phase, made even harder by such an impossible decision. I wish you lots of wisdom and am sending you ((((HUGS))).

    Liked by 1 person

    • Thanks for your support. I suspect that’s what it will be for us, too. We’ve done the waiting list piece, but he is totally opposed to going. However, a month of Namenda has been miraculous — no fight in almost four weeks now. Crossing fingers. Hugs back!

      Liked by 1 person

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