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Elderly parents

Mother in Law. Need I say more?

31 replies

Sandra2010 · 26/03/2022 20:44

Settle down, story time. My husband is an only child. His dad died years ago. Mother is now 80, sliding slowly into dementia, and as stubborn as you'll find. She is poorly educated (from a rural area where education wasn't really valued, working was more important) which is adding to the problem. I have been patient regarding all these things and have made excuse after excuse for her while my husband is short tempered and impatient. This is not only because he's frustrated but also because he is grieving for the mother he's slowly losing, so I'm also trying to be patient with him. She's been all but housebound for the past two years, and we've been pretty much her only contact with the outside world. She wasn't really getting out much even before covid, due to being a heavy smoker all her life and struggling with COPD. She lived, until Xmas, in the house my husband was brought up in, a 3 storey townhouse, with 3 bedrooms. This tells you how stubborn she is, to her own detriment - all the bedrooms are on floors 1 & 2, ground floor is kitchen/diner and WC. For the past two years she hasn't been able to get to the top floor, where the bathroom and her bedroom are. She can't sleep on the middle floor because she needs to be near a toilet. So for two years she's been sleeping on a two-seater sofa (it's not even comfortable) in the dining room, and getting washed, and washing her hair, at the kitchen sink. There's no room in there for a bed. We've tried everything to get her to help us improve things. She's refused carers. She refused to move to a brand new flat in a sheltered accommodation 200 yards from her home. So we gave up, while visiting her every single day to take shopping and cigarettes and be company for her. She wouldn't let me change her bills to direct debits and insisted on pre-paying everything which meant we had to go out and pay all her bills in various places too. We have jobs and are raising a disabled child. I was just getting to the point of desperation when, on New Year's Day, we went to find she'd fallen through the night and had been lying on the floor for a long time. Amazingly, she recovered well and was pretty much unhurt - she has a small fracture in her pelvis, which is painful but doesn't need any treatment. She had a few bruises. She ended up being in hospital for a month as her dementia worsened, and she got a UTI that took time to cure. She was then discharged to a temporary care place. We found an assisted living flat for her, which her medical team and social team felt was the best option as her mobility has worsened even more. It's like sheltered accommodation but has a nursing care team as well who visit her 4 times a day to help with medication etc. We spent 3 weeks decorating it for her. Everything, carpeted throughout, curtains, sofas, an electric chair that reclines and helps her to stand (which she sits in but refuses to use otherwise), I used money from her bank to buy her bed, but we got her bedroom furniture. We didn't bring much from her home because, tbh, the furniture was all old and falling apart, and everything smells of stale smoke. I brought photos, personal belongings, decorative items, cushions, throws, etc, in an attempt to give her lots of familiar things. Please know, I don't care how much it cost, we're in the lucky position that we could find the money to do it and I don't resent a penny of it. I really want however long she has left to be comfortable and an improvement on the past 2/3 years for her. So, having complained for 3 years about being bored and lonely, and living in such a poor way, she now has a two bed flat with a wet room and everything easily accessible, is safe, has carers, and can walk down the corridor to the lounge where she can meet other people for a chat. Except. She's been there two weeks. She won't sleep in the bed. She's not showered, or asked for help to shower, despite me repeatedly telling her that's what the carers are there for, though she is getting washed. She insists she doesn't need laundry done (she doesn't like that it's a communal laundry room) except I know she must. She refuses any medication except inhalers from the carers then complains because she's constipated and in pain. We've refused to take her more than 20 cigarettes a day (she didn't smoke the whole time she was in hospital and care), we'll leave 20 with her at 6 pm, and she'll be on the phone at 8.30am saying they're gone and she's desperate for a smoke. Partially due to her memory problems, she then phones repeatedly, like, minutes apart, to remind us. I don't need her to say thank you, I don't even care whether she's grateful, to be honest, I just wish she would take advantage of everything we've slogged our guts out for the past month to achieve for her. I'm trying to wait to see if she'll be better when she's settled in, but am I being unreasonable to be angry that she won't even sleep in the bloody bed?

OP posts:
JuliaDomna · 27/03/2022 09:29

This is very common behaviour for someone with dementia. It is not her fault. While moving her to a safer environment was a good thing to do it will have set her back and make her very confused. Also a spell in hospital and UTI will also have deleterious effects on the dementia. You may find eventually that 4 visits a day from carers will not be enough and that she may need higher levels of care. Also watch out for UTIs they can affect behaviour too, including hallucinations

We had a similar experience with a relative and they never really settled. Dementia is an awful condition. It can be very frustrating caring for someone. My relative kept accusing people of stealing their things or letting themselves into their flat. Kept wandering off and getting lost. but the person with dementia suffers greatly with depression and anxiety. Eventually the dementia progresses and they can become calmer and more childlike.

What you are seeing with your mother-in-law is the illness. I was at my wit's end with the phone calls throughout the night. Eventually I settled for phoning once a day and keeping in touch with the carers regularly. You can order frozen meals from Wiltshire Farm and incontinence pads etc online. My relative is now in a care home . It is such a relief to know they are cared for and safe.

I hope you and your husband find a way to cope OP. But please don't blame your mother-in-law for being difficult, she really can't help it. Just remember her the way she was before the dementia, bearing in mind her behaviour may have changed a while before her diagnosis.

Sandra2010 · 26/03/2022 22:27

Our problem is that she's constantly complaining of all these things being a problem but then actively refuses to do the very things that will solve the problems, and we have no other answers. I'm more stressed now that she's in a safe place, than I was when we were really worried about her surroundings. I know she's had a complete change in her whole life, and that's what I keep telling my husband, to give her time and be patient, but it's so difficult. Maybe it's because her quality of life should have improved so much that I'm incredibly frustrated that she's being so obstinate and won't help herself.

OP posts:
AcrossthePond55 · 26/03/2022 21:37

If she were in a wheelchair, you wouldn't expect her to get up and walk. If she had had a stroke and was aphasic you wouldn't expect her to talk. She has increasing dementia, you can't expect her to 'think like you'.

I know it's frustrating, but you just have to keep reminding yourself that her brain 'isn't working right', that in essence it's 'broken'. You cannot expect a person with dementia to understand or keep to the 'common boundaries' that we, as non-cognitively impaired persons, keep to.

Also, in people with dementia a change in residence can actually make them worse. Their minds just aren't easily adaptable to new things. She knew where things were and she had her daily routine in her old home. Now, she's in new surroundings with unfamiliar things and her old routine is gone. She's floundering and her dementia will not allow her to form new routines. But it has only been two weeks, that's not enough time for her to adjust to anything. She may settle eventually, she may not. But 'keeping after her', even in the kindest way and with the best intentions, to do things, have showers, sleep here, meet people is not going to help her.

As for now and as far as repeated phone calls and cigarettes, you do have the right to decide just how much you are going to do and how often you're going to do it. But if she wants to sleep on the sofa, who is she hurting? Not you and not worth fighting over. Same with medication, it's her decision and again, not worth fighting over. But I'd probably do her laundry if where she lives doesn't offer laundry service.

When my late mum developed dementia the best advice we received was not not try to 'force' her into our world, but to enter hers as much as possible. So we let her think her cat was 'communicating' with her. We let her sleep in her recliner. We didn't insist she go to the activities available to her. We let her find her own way with the knowledge that she was being safely looked after. She did eventually form a new routine and 'friends' for awhile but eventually (as will happen with your MiL) the dementia worsened to the point where her 'world' was very very small and she knew nothing and no one in it, including us. Dementia is an ugly ugly thing and it's a heartbreaking journey you are just starting.

HelloDulling · 26/03/2022 21:10

Argh. Poor you. But, she’s safe, fed, warm, and clean. Which means you can sleep soundly in your own comfy bed.

TheABC · 26/03/2022 21:05

Ok, step back. If she won't sleep in the bed, there's nothing you can do about it. You've done your best to see she is safe, comfortable and cared-for. If she won't be showered, at least she is getting washed. Can you quietly arrange her laundry to be done without her knowing?

After all; what's the alternative? You are not going to let her go back to a totally unsuitable house where she is isolated and alone. I do wonder if part of the way she behaves is to maximize attention from you (e.g. the payment thing) as well as having the comfort of familiarity.

mdh2020 · 26/03/2022 21:05

It is understandable for you to be frustrated by this turn of events but you have to take a deep breath and realise that what you are describing are symptoms of her progressive dementia.

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