Hello. I'm new to these forums, and I'm not entirely sure what I'm looking for. Perhaps just to vent. I will try to keep it short, at least as short as I can. My FIL died about two and a half years ago after a bout with lung cancer. Since then, there has been the question of care for my MIL. She is currently diagnosed with low-level dementia (not sure of the official terms), and it mostly manifests as short-term memory loss. She's still quite lucid, knows who people are, etc., so that is good. Within a short time after her husband's death, she moved into an apartment in the town they lived in, and not too long after that sold the house. She suggested an arrangement where she would live with each of her kids for 3 months of the year on a rotating basis. I told my husband I did not think this was a good idea on many counts, including: medical issues; one sister living in Tennessee, halfway across the country from us; we have no room for her to stay long term. She stayed in the apartment for about a year, and since then has spent most of the time living with her oldest daughter and her husband, but that has problems as well. My MIL has some frictional history with all three of her daughters, which has resulted in arguments. My MIL is 82; SIL1's husband is 72 (SIL1 is 62 herself) and does not particularly want to be a caregiver at this stage in his life, and I can't blame him. SIL2 and her husband offered to have MIL live at their house but it didn't last long. In April, MIL and SIL2 had a big fight which resulted in my husband (the youngest of the four kids) retrieving my MIL and bringing her to our house for what turned into seven weeks. My MIL has at last gotten her name on a waiting list for a residence, but there's no real time frame on when that might happen. SIL1 asked us to go on a rotation with her, one month at our house and two at hers, and while we are doing the now, I don't think it's a great idea. My MIL's problems were obviously worse last week (her first with us of four) with the relocation and I'm sure that will repeat when she goes back to my SIL1's. My husband and I are the youngest (i'm 46, he's 48) and we are the only ones with school-age children (8 and 12) at home. We have a 4br house but my husband works at home, so no free room for my MIL. She's staying with my daughter, which is fine for now as my daughter likes having a "bed buddy." I find myself frustrated at the situation in general (e.g., I feel a lot of this could have been avoided if my MIL had not been so insistent on saving money in order to leave an inheritance), although I realize the dementia is not her fault. We can't do much medically as her doctors are not here, although there isn't much to do at the moment. We fear the usual things, such as a fall and a broken hip. I try to get out, and to be fair my MIL is not mean or rude, and does not demand I entertain her or anything like that. I think it's more that I'm tired of repeating conversations (but I do, and calmly), and that I don't think this on/off rotation is really sustainable for too long. Any help and advice would be appreciated. I also realize what I'm looking at here is far less than what many deal with, and my hat is off to them.
I do think they were trying to take care of her, in the way she wanted, as best they can. That's becoming more difficult, and I realize will continue to. Still, I can't change it. And there is a light at the end of the tunnel, with her on the waiting list at a residence. Perhaps we will find more.
Perhaps what I was hoping for, besides just information and perspectives from others in similar situations, was advice on coping. I find that I'm a bit more bothered this time around, and am not entirely sure why. Some of it is the general situation, some is that I'm not crazy over having someone else in my space, some is the kind of omnipresent fear or at least concern that something will happen -- a fall, or something else -- that will complicate the situation. Since I can't make things happen, I'm trying to find ways to stay cool, as it were.
Dividing the burden of care more evenly, its being your MIL's proposal in the first place, the fact that she was perfectly happy with the scheme... none of these even kind of outweighs the reality that constant disruption in her environment is going to aggravate her disorientation as she becomes increasingly confused. Which *will* happen. And if they wait until she is immobile or incontinent before she enters residential care, what odds would you give her of establishing a good quality of life there?
Your point that you are not placed to make "executive decisions" is a very fair one, though; I do understand. And I agree that you can't make your husband and in-laws make your MIL do anything. But what you can do is gather information and materials together and educate them about what is ahead. Right now it sounds as if they are sticking their heads in the sand.
CTTN55 -- it's not that my MIL won't agree to go to a residence. She has gotten on the waiting list for one. The problem is we don't know how long it will take for her to get into it. We are going to look around for residence around here similar to the one she's on the list for and that way even if we can only get her on another list or two, it might reduce the waiting overall time.
The rotation is not a great idea, I agree, but it reduces the stress on any one family. My MIL herself proposed the original quarterly rotation in order to make things more equal. She intended to pay rent to whomever she was staying with (and she does), for example, but also I think she was considering that if she stayed three months with each of her kids, then the care burden was also more equal.
I know that structure is important. I believe my MIL did well with us in her earlier stay because -- since we have kids in school -- we have a more structured day. It's not so structured now with summer vacation, but there is a certain regularity. My other SILs don't work (in fact of the three, two of their husbands are retired), so I think their days are less structured.
And while I don't mean to downplay her dementia, right now it isn't as serious as many. She can take basic care of herself. We all agree she shouldn't live alone for lots of reasons, but she doesn't need help getting around, or showering, etc. I know that can change but that's where we are now. Her emotional state seems pretty steady, at the moment.
There's only so much I can do, because I am the DIL. I try to talk to my husband about it, keep lines of communications open, observe my MIL to see if anything needs attention, etc. But I can't make them make my MIL do anything, not that I want to. They don't feel the situation requires forceful measures and even if they did, I'm not sure what action they could take at this time.
My cousin went from running her own household to having to be in Assisted Living in just a couple of months! Her doctor said she was not able to live alone. Thankfully, years prior, she had appointed her Durable POA and Healthcare POA.
At a certain point, she won't be able to make decisions, process information, or even be a part of her healthcare decisions. So, if she hasn't signed her Durable POA and HCPOA, it's going to be an uphill battle.
And it's rare with dementia patients that you can handle their affairs and keep them happy about it. It's often unpleasant and challenging. Trying to keep her calm and happy, while protecting her interests may be quite the challenge. I would consider all of this before I'd agree to be the DPOA and HCPOA. It takes a lot of time and energy. I really wish I had not agreed to do it for my cousin, but there was no one else.
Continuity is absolutely, fundamentally, unarguably critical to good dementia care. The rotations are a TERRIBLE idea. If you are finding it hard to get this across to your still-participating SIL, gather information from any informed source you like - they will all stress how vital it is that your MIL stays put in one familiar environment.
The residence she's looking at, particularly with its continuing care gradations, sounds perfect.
I would also say that your MIL's anxieties and increasingly emotional responses might be an indication that some aspects of her dementia are progressing faster than is obvious.
How long is that waiting list? If you can, be a squeaky wheel with the facility's administrators and see if you can't get her application bumped up the list a bit. Do they offer day activities or anything she could join in with as tasters? Do they have fund-raising events or that kind of thing, that the family could participate in? Check in regularly but cheerfully so that they know you're serious about your interest.
When your MIL says she doesn't yet need assisted living, explain to her that it is much better to walk in than to be wheeled in. Much better to join this small community as a fully-functioning personality than as the kind of severely disabled person she has in mind. Much better to choose to be there, than to have no choice at all about where she ends up. The sooner she settles and makes friends, the better her chances of actually enjoying her new supported lifestyle - rather than just having to accept whatever life throws at her.
And heart meds - watch out for vascular dementia. If you focus too closely on Alzheimers symptoms, it's easy to miss the slightly different red flags you get with vascular dementia.
Your husband is afraid of upsetting her in case she has a heart attack for which he could never forgive himself.
Oooooookay.
Your husband will do more loving service to his mother if he prioritises her wellbeing. To do that, he needs to focus on all of the realities of her health and her care needs. If she does have a tizzy, he should put an arm round her and speak to her reassuringly. But he should not reinforce any fantasies about how she can have everything she likes and everything will be wonderful. It will not. She needs him and his sisters to be the grown ups, now.
She's your family member, but knowing what I know.....I would insist she have it properly signed before she could come to my house for a visit. Have they explained to her that the State could take over her care and affairs if she has not properly appointed someone on her own? Of course, if she's not able to process it at this point, there's not much you can do. I would set my boundaries though. That list sounds rather ridiculous. I might try to get on a list someone else, since she may need care long before she name is called on the current list.
She can process things; aside from the memory "short circuits", she's fine as far as that goes. She knows who we are, and things like that. As for the rotation, it's down to us and SIL1. SIL3 is too far away (and I don't believe they would want her to stay even if they were closer), and after the fight with SIL2 (although things are better between them), neither SIL2 nor MIL wants to go back.
This is an aspect that frustrates me, because it feels like options are being removed and I have no say. She also has some common physical issues -- she takes heart, BP, cholesterol meds, as well as some OTC things recommended by her doctors. She has a lot of aches and pains.
The waiting list is for a small senior residence in Virginia, near SIL1, with graduated levels of care. She does not want a larger residence (she looked at a few while visiting us here in PA in April), and is quite fixated on the expense when discussing it. The plan is that she will move into the residence, but it is small (less than 30 residents) and she is #26 on the waiting list. They did say that sometimes when a room is available, they will go down the list before they find a taker; people will have found other arrangements or passed on, etc., so she could move up the list quickly at times.
Probably as many in her situation do, she feels that she doesn't "need" assisted living because she can shower and dress, etc., on her own. We've tried to emphasize that while this is true, this is the time to look for a living arrangement, because if she should fall or otherwise have a health problem, her options will be far more limited. And those conversations are difficult because she's set in her ideas, and then -- she forgets.
We have tried to make plans, but unfortunately MIL is often the biggest obstacle. We can't make her move into a residence, for example, not that we really want to force it. To an extent my husband and SILs don't want to force the issue because they don't want to make her angry; my husband fears that she might become so upset she'd have a heart attack and/or die, and says he'd never forgive himself if that were the case.
I myself get frustrated on various levels, as I'm sure so many caregivers do, and I'm not even doing that much "caring" compared to others people. Mostly we make sure that she takes her meds. MIL seems to think that this arrangement is fine, and generally it is, but overall it's not.
And I'll stop now because I didn't mean to quite go on like this.
Good luck to you guys. You're asking the questions at the right time.
You and you family need to do some soul searching. Do you really want to spend years as a caregivers? What about the kids? It may seem doable now but it gets harder quickly. Read the stories here from folks who are doing this. People can pull it off but you can end up sacrificing your life. You guys are pretty young still.
Someone needs to get POA and get control of the funds for her care. My folks also think they are going to leave me an inheritance and get very upset trying to understand how much eldercare costs. It's hard to burst this bubble of myth that folks have about leaving it all to the kids. My folks have enough for a few years of decent care depending on how long they live. I have controlled the finances for a couple of years and I have been planting the story that they have plenty, insurance, Medicare will cover care cost, I will have an inheritance, don't worry, it will be fine. Lots of fibbing, yes, but with my folks there is no other way.
A word about POA.......Choose one person. Trying to share POA responsibilities is a mess. Have others sign on as contingent POA.
You have a family that seems somewhat helpful. If you guys get together you will figure out the best plan.
What kind of residence is she on the waiting list for? I might explore what type of facilities are adequate to care for dementia patients. Normally, it's Memory Care or Nursing home, depending on their condition.
Based on what you have posted, there doesn't seem to be much of plan. That would frustrate me too, as it has the makings of a much worse situation. Can the siblings discuss it with mom and make a plan?