Mother in Law. Need I say more?

[Sandra2010]

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?

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.

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.

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

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.

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.

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.

Reminder to all of us to be pragmatic about our own inevitable physical/mental decline, when the time comes for us? Accept help, work with your carers not against them. etc.

It's not helping you to be angry, OP. It sounds like you both managed to do your duty by her in sorting her care needs, in spite of the difficulties, and that is highly commendable. You'll burn out if you keep attaching emotions to this situation, though. PP are right, MIL is doing the best she can, it's just that her best is crap.

My nearest experience was dealing with an alcoholic mother -- I realised she effectively had lost sanity & couldn't make better choices.

@Sandra2010

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.

That's where you enter her world. Just say Mmmm and I see and let it go. Don't try to find solutions to what she perceives as 'problems'. Be thankful she's in a safe environment and let the rest go.

Can I just say you've done an amazing job? It's incredibly tiring and frustrating. Vent away here. But you've got a lady who might never have left hospital into a place where other things are at least possible, and dying on a cold floor is much less likely.

As far as the situation now goes... very difficult. Are you worried about her safety smoking? Are there fire alarms there? Smoking could prevent her leaving hospital if she ever gets to the point of needing home oxygen, as it wouldn't be safe to have both... but smoking is a familiar action, a comforting routine, perhaps a way of holding onto normality and time passing as the cigarette changes. If she has the money, would it be so terrible to smoke more?

If she has the money, would it be so terrible to smoke more?

It would. I mean, she doesn't have the money - they're almost £12 for 20 these days. I know she's never going to give up, but she couldn't smoke while in hospital and care and after about 6 weeks she was like a different person. Her colour was improving, when she was sitting still you couldn't see her shoulders rise and fall as she tried to get enough oxygen, she was able to walk across the room without needing her inhaler. Don't get me wrong, it was still bad, but so much better than it had been. We knew she would start smoking again when she came out, but we made a decision, which we've never done before, to ration her cigarettes so instead of taking 40 a day we would take 20. Basically, she will smoke what we leave until they're gone then be on the phone asking for more, so it may as well be 20 as 40.

Thank you all for being kind and giving me more context. I've not had to deal with anything like this before. I've spent two years doing my best not to control her or infantilise her and now that I'm having to do that, I feel bad too. There are so many layers of emotion because I too miss the person she was, even if that person wasn't always the most likeable in the room - she has never had a filter and could always be blunt to the point of rudeness - you can imagine how that's going now. It's a good job I have a fairly thick skin when it comes to (unintentional) insults and (sometimes intentional) rudeness. As difficult as she could be, though, she was funny and could laugh at herself as well as others. She had very outdated views but listened to my kids when they told her why what she was saying was wrong, and I think she learned a little from them. All that is gone and she just seems very egocentric and can't see anything beyond herself. I know that's not intentional, but it's very sad to see.

We had a chat today (DH, DD, and I), and we're going to keep trying gently to help her socialise as we think that's the most pressing issue, her loneliness and introspection, and we're hoping if she can have some outside interests it will ease the pressure on us somewhat.

Can the carers take 4 cigarettes out of a combination locked box each time they visit. So when she repeatedly phones you can say things like that yes she will be getting some soon /not long now/ a bit later on /the carer will bring some etc
Might take the pressure off the calls and makes your replies to her more positive

@SecretDoor

Can the carers take 4 cigarettes out of a combination locked box each time they visit. So when she repeatedly phones you can say things like that yes she will be getting some soon /not long now/ a bit later on /the carer will bring some etc Might take the pressure off the calls and makes your replies to her more positive

I did actually consider this, but I don't think they'll be allowed to. They're not supposed to encourage smoking in any way, and I think that might count as encouraging.

I have read the replies on here, had some gin, and some chocolate, and a cry, and I feel a bit better about things. It's still sh*t, but I have decided I will cope, or I will remove myself from her until I can cope again.

Do you think that you feel this way because you expected more? If you thought that the move would solve everything, all would be well and your worries would be gone - well that didn't happen did it? If you expected relief and a bit of a release from duty it's not surprising that you'd be upset that all that you've done has not achieved that.

They say that dementia is the long goodbye and I grieved for the loss of my mum, the mum I remembered, for a long time before she died.

@Knotaknitter

Do you think that you feel this way because you expected more? If you thought that the move would solve everything, all would be well and your worries would be gone - well that didn't happen did it? If you expected relief and a bit of a release from duty it's not surprising that you'd be upset that all that you've done has not achieved that.

They say that dementia is the long goodbye and I grieved for the loss of my mum, the mum I remembered, for a long time before she died.

I expected she might sleep in the bed. I expected she would have showers instead of washing at the kitchen sink. I thought, maybe after a few weeks, we might be able to visit every other night instead of every single night, which may happen but it doesn't look like it right now. I didn't expect anything to be solved, but I thought she might take advantage of the opportunity to make herself comfortable. I don't need thank you, or concession that we were right all along, just to feel like after the constant slog over the past 2-3 years we've finally been able to improve her quality of life. We're physically and emotionally exhausted - we have a disabled child to think of too - so we had to do something. I would much rather that had been 2 years ago with her consent, instead of having her fall and be unwell and then be forced into it, but she resisted it even back then. Instead, the only improvement is that she has a more comfortable sofa to sleep on. Her neediness has increased, which is to be expected given the huge changes in her life, but I could cope with that much better if she'd just allow herself to be comfortable. I'm angry because I'm so frustrated. Her dementia is not so far advanced that she can't understand there's a clean comfortable bed and an accessible shower there for her.

This is tough for you @Sandra2010. Dementia is cruel, and a suffer's actions have no logic. Its a horrendous disease for a family to have to witness and deal with. You are doing your best in making her safe and comfortable.

OP i think what you are doing for your MIL is brilliant however dealing with dementia can be a nightmare. Read 2 books by wendy mitchell who has early onset dementia - she explains a lot of things about how dementia can affect people which a normal person would have no idea about. I wish her books had been available when my dad had alzheimers over 20 years ago.

Also about not sleeping in the bed - my MIL was like this and she didnt have dementia - spent a fortune on a new bed but she slept in a chair on on the sofa - no advice here except theres not a lot you can do.

Hang on in there - you are doing a wonderful job.

Is there a reason you can’t drop a visit or two if she has carers/nurses there ?

@mdh2020

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.

Nailed it

Hugs, so frustrating but that's the cruel nature of dementia. All of this is eerily familiar minus the cigarettes bit. You almost need a dispenser that drops one out every 45 minutes, though I'm surprised they allow smoking inside

I understand the frustration you feel OP. All of what you describe is so familiar to me. I used to get so stressed and upset by my relative's behaviour until I learned more about dementia. The early stages can often be the worst because there is enough of the individual there for you to have expectations of their behaviour. They simply aren't able to think like someone without dementia. It is a cruel disease. No amount of persuasion resulted in changes in their behaviour. We tried day centres and encouraging them to attend the activities at the sheltered housing setting but to no avail.

What I found is that I had to step back emotionally and have no expectations. I tried to always do the right thing and have compassion for my relative. I visited once a week as I lived some distance away. I took them to the local garden centre for lunch. I phoned each day and checked with the carers. I made sure they had food and the clothes they needed but I didn't answer the frequent night calls.

My relative's dementia is now severe but they have become much calmer and childlike. After several falls the carers at the sheltered housing setting said they could no longer accommodate their needs to the next stage was a care home.

I really feel for you OP but it's best not to have expectations that your mother-in-law will change. She may or she may not, it depends how the dementia affects her.

@gogohm

Hugs, so frustrating but that's the cruel nature of dementia. All of this is eerily familiar minus the cigarettes bit. You almost need a dispenser that drops one out every 45 minutes, though I'm surprised they allow smoking inside

I wish it existed! The facility is like a sheltered accommodation, so she has her own flat in a block, with the carers just popping in. She's allowed to smoke in there but not in any of the community areas, and not when a carer is in her flat. It's one of the reasons I'm hoping to get her to go along to the community room, it will reduce her smoking!

Thanks everyone. I think I need to do a bit of reading up on dementia, as suggested. We're also going to get her an appointment with her new GP for an assessment as things have deteriorated since her fall and hospital stay.

You've done, and continue to do, a wonderful job caring for her. Naturally I think, you may have been looking forward to relaxing a bit, once you got this place for her - I don't mean relaxing really, but just not having such massive, continuous anxiety. Sadly, she is still causing you anxiety but, as others have said, it's all part of her dementia. My mum had it and it was the saddest thing ever plus, as you are experiencing, incredibly frustrating, worrying etc.
Your mum in law might well settle, two weeks isn't long. I hope she does but there are no guarantees. Just know you are doing it all right, you're a good kind person and we all hope for someone as thoughtful and good-hearted as you when our time comes

My mum has been in an extra care flat for a few years now, and my brother (who is the one who lives locally) has stepped right back.

She has most of her marbles still (she is physically rather than mentally disabled) but is very difficult. We work with the carers to ensure that everything she's entitled to is done for her (so we don't do her food shopping, for instance, it's part of her package). She smokes and drinks to cope with her confinement to her flat, so my brother visits weekly to leave her allocation of cigarettes and whisky for the week, and the carers are in controle of her 'ration' for the day (they keep it in their office). We had to do this as her bank balance was crashing to the point that she'll have nothing within 12 months, and also because she would become intoxicated without some control over her drinking.

It simply isn't feasible or desirable for us to visit every day. The carers ensure that she is safe and cared for, she has her TV and her books, and thank goodness is okay with her own company and that of the carers and one friend who visits.
Others there dont have any offspring to do any of this stuff that you're doing, so the care has to be there. So please see this as a chance to get your life back little by little. My brother goes once a week, and I travel up there once a month. She doesn't really seem to enjoy our visits that much, so as long as she's safe and cared for with her care plan, that's pretty much all that we need to do.

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