I am losing sleep over this. (I'm also losing sleep over Mom awakening me twice a night at least.) Things are just moving slowly downhill, and I'm being pressured majorly by my husband to FREE US, before we get too old and worn out to enjoy our own "senior years." I can't stand to even think about moving my Mom out of the home. She isn't much of a bother really, except the 24/7 aspect of this caregiving process. We just can't get away. She's always there. Always inserting herself into our discussions. Not in an overly aggressive way, but just wanting to get in on the conversation, but many times clueless about what it is we're even talking about. I could go on with thousands of things....things you all know about. I feel I'm being dragged closer and closer to the edge of the cliff. The cliff where I take my Mom and shove her somewhere for someone else to take over her care. She wouldn't even be allowed to take her kitty, that she loves so dearly. I can't even imagine doing this, but I'm getting between a rock and hard place. Believe me. It's not a pretty place to be in. I find myself awake at night wondering what the facilities are like. Do they have clueless dazed residents wandering around at all hours talking to the chairs, etc? How do they keep the ppl in their places/rooms at night? Do they drug them? Do they scream and yell to get out? OMG, I hate this prospect. I'm really in a bad place in my head. Has anyone else gone through this horrible struggle? What did you do? Any input would be much appreciated. Thanks.
Braida, the only way to know what you think of MCUs or similar is to go and have a good, critical look at them. It doesn't commit you to anything. Tomorrow we're going for a second visit to the residential and dementia care home we saw a couple of weeks ago, where the manager put it like this: "they're not prisoners, this is their home."
I was very impressed, by her attitude and many other things too, which is why we're going for a second look (and lunch! - to try the food, all part of the cunning plan). If all goes well, I'll suggest mother stays for a week's respite care. If that goes well, we'll do it again. And meanwhile it's getting near to decision time for mother: move to a new house of her own, or move into permanent residential care.
On one or two specific points, at the place we're going to look at, the dementia care rooms are all fitted with motion sensors; so if people are up and about at night time the staff can pop their heads in and check that all is well. If residents wander, they also put alarms on the room door. But what struck me as being very different is the staff's attitude to these behaviours: they're very much guardian angels and not prison warders. If a resident wants to leave the building, they won't stop him - they go with him, then guide him back inside. It's a Methodist foundation, I don't know if that makes any difference, but certainly the attitude is amazingly caring and understanding. I really do think that attitude is everything. Keep looking until you find you're talking to people whose respect for the residents they care for is genuine - you'll know it when you hear it.
And until you do find somewhere you're truly happy with, keep your mother with you. The trouble is, if she's in a facility you're not 100% sold on, you'll have all the stress and all the worry and you'll spend your time racing back and forth to see her or talk to the staff and you'll be too anxious to book any time away anyway. And you'll feel guilty as well. And you could end up blaming your husband. And he'll still be grumpy that you spend too much time on your mother. It'll solve nothing.
I do understand how wonderful it would be… just for example… to have one meal not interrupted by coughing and spluttering and endless napkin flourishes… or to watch one tv programme without subtitles… or to have a night of uninterrupted sleep… or to leave the house without a 20-point mental checklist or even necessarily thinking exactly when I have to be back…
It'll come soon enough. Even if it does feel like forever now. But if meanwhile we DO find the right facility, one that would genuinely be better for our parent - then that's good news all round, isn't it? Wish me luck, and good luck with your own search too x
But many people with dementia can function quite well in regular assisted living or nursing homes (depending on their degree of need for medical help).
Finding a suitable place can be a lot of work. It is worth it.
Braida, I cannot imagine that you would ever take your Mom and shove her somewhere for someone else to take over her care. Writing as you do, I don't think you will ever abandon your mother. But it sounds like it is time for you to be there for her in a new way. Allowing professionals to take over the day-to-day care will free you up to be the loving daughter, to visit often, to advocate for her, to do special things for her.
So there I was last night, thinking thank God I'll get a week off, and then thinking about how mother would settle in there if this were a permanent move. And bear in mind this place is GOOD. And it was the most depressing prospect I can imagine. If I were nearly ninety, and none too sure of myself physically or mentally, and desperately clinging on to every familiar landmark, how would I feel about moving to a single room in a modern building where all of the strangers were sweet and kind and concerned about my welfare? No cat. No big mahogany bed. No walls full of books. No view onto the garden with my daughter inexpertly weeding and the chickens scratching up the flower beds. No bath. Nothing of MINE.
It would be like staying in a decent hotel. Forever.
Braida, I'm sorry to tell you this but speaking for myself I can't face it. I'm not doing that to her. I desperately need this week off, but after that she's coming home, and when we move house I'll stick with her - unless she has such a fantastic time at the care home that she says she never wants to leave…
For some people a care facility is the only option. For others there may be several options and a care facility may be the best one. My mother (93, dementia, mobility problems) just moved into a nursing home and we are all pretty sad about it. It is sort of like staying in a decent hotel, with lots of extra services. But it is far less impersonal. When I first took Mom to her room, my sisters had already moved in her familiar green chair with the blocks that make it the right height to get out of easily, and the half-desk that swings into place when she wants to work crosswords. Her bed was made with her own familiar spread. Some favorite silk plants sat on the windowsill. Her clothes hung in the closet and were folded in her drawers. We talked to the maintenance man who told us to go ahead and hang anything -- they always painted between residents and he'd fill all the holes. So now she has the same family pictures to look at that she had in my sister's place and in her apartment before that. She has a calendar of her beloved Twins team, and their game scheduled posted. Recent greeting cards are on her bulletin board. I think we'll put a bird feeder outside her window. When you go somewhere for a week's respite, or for rehab, it is a generic room. When you move in, it is definitely your room. (If I reach that age and need, my room will definitely have a wall of books!)
She got to have her hair done this week without getting into winter coats, getting into a car (which is increasingly difficult) and reversing the whole process when she was done. Just a short wheelchair ride, and she looks great! She mostly watches game shows and does crossword puzzles, but she played bingo last week. Hooray! And wonder of wonders the place is warm enough without heaters and special mittens.
Is this ideal? No. What would be ideal is no mobility problems and no dementia. We can't control that. Is it good under the circumstances? Maybe. She hasn't been there long enough to get a sense of that. So far so good.
I hope that you thoroughly enjoy your week off, CM, and that you schedule another one periodically. Since your decision is to keep Mom with you, respite will help make that possible.
I agree that a week of respite is not the same because their surroundings don't become familiar in that short of time. When I take my mother out for an outing, she never asks to go her house, but she does ask about going home at the community. It is a very difficult decision and one that only individuals can make. We have not "dumped our mother" as many assume when you tell them the truth. I have gotten where I give limited info because this is what people think.
Yeah, it's just the 'but."
And damn me if, on the way home from our visit there on Thursday, she didn't come out with how much she wanted to stay in this house, all of a sudden. This house in the country that she's been beefing about for four years, mainly behind my back, and saying how much she misses London. Mary Mary quite contrary.
PSteg, thank you for your hugs - I did try to reply to you personally but I got an error message from the site, don't know what happened. I wouldn't be surprised if mother preferred the company of her fellows: I'd be astonished. She has three good, loyal friends, one of them goes back seventy years and the other two fifty, and frankly she doesn't deserve them. They make all the running, all the effort to stay in touch. She's not a sociable type, and I suppose because she now feels so vulnerable as well she is frustratingly negative about even the kindest of people.
And, she doesn't have to move to ALF, she can choose to stay in her own home, I am prepared to keep on caring for her. I want it organised a good deal better, but I will do it if that's what she wants. I think it's just the frustration that gets to me, I find it so hard to empathise with her shrinking from society and activity and companionship of her own age… why? Why is she so afraid of people? It's not a new thing with her, but I still keep hoping that eventually she'll admit that many people are kind, generous, intelligent and amusing in spite of her sincerely held beliefs.
I think the other thing that puts my back up is the "well tough she can like it or lump it" type remarks I hear from the family. Not Good Enough. If you care about someone, why insist on principle that you won't lift a finger to make them happy? And, so, in that case, in what way DO they care about her? Deigning to drop in once a quarter, like they're doing her a favour?
Feeling a bit sore - and getting even further off topic - because tomorrow is Mothering Sunday in the UK and nobody is making any effort to see her. Sister left a present and card ready. Then this morning a card arrived with my SIL's handwriting on the envelope. Thought I'd open it so that mother would see the card, only, and not notice that brother hadn't bothered to address it. Only the card's in SIL's handwriting too. Brother apparently too exhausted and stressed to sign his name, poor dear. And SIL, Ms Diplomacy 2014, has written "sorry we won't be seeing you, we're having a BBQ for [Lovely Nephew 1's] 30th birthday here at home."
So they can't see mother on Mothering Sunday because they've organised a party for her grandson and haven't invited her.
If you were going to do that, would you write and tell her so in her mother's day card?! Trying hard to see the 'positive good intention' here but really struggling.
I've put the card on the mantelpiece so that I can just wave at it vaguely - "oo look they sent you a lovely card" - and hope she won't want to read it.
Going back to the point, I don't EVER conclude that other families have 'dumped their elders' - or not unless they pretty much spell that out, at least. I can think of plenty of circumstances that would make it completely impossible to have your parent living with you, or vice versa, and I really do think No. 1 Good Reason for that is simply not wanting to do it. I don't blame my siblings for not wanting to live with my mother; I do blame them for making excuses, pretty pathetic excuses at that, about why they have so little to do with her. If you don't care, you don't care and that's fine. What's not fine is claiming to care when as a matter of hard cold fact no, you don't give a monkey's.
Also - still trying! - to go back to the point, my brightest glimmer of hope is that my mother's happiest days were, literally, when she was at boarding school. She had a great time. She made friends. She did well. If I'm really, really lucky… it'll all come back to her.