Elderly couple, dementia, care home?

[Knitwit101]

My in-laws are struggling. Fil has dementia and is immobile so basically sits in a chair all day crying for mil to sit beside him hold his hand. She is old and frail but doesn't have any dementia. But she is utterly depressed. Sh doesn't even get 15 minutes to sit and read her magazine or newspaper.

They have 4 x a day carers, we can't complain on that score. But poor old mil never gets a break. She has mentioned several time about care homes. They would both go, she wouldn't want to stay at home by herself.

Dh (their son) is dead against care home. For many reasons. I don't think he gets how bad his mum is feeling, how low she is feeling. He has no idea of the relentlessness of someone wanting and needing you every minute of the day. My experience of this is limited to clingy kids shouting for you every 5 minutes in lockdown but at least I knew that would end. There's no end for mil.

I feel that a good care home might have some tips and tricks for separating them and giving mil a break. Maybe they could have rooms at opposite ends of the corridor so she doesn't hear him shouting for her the minute she wakes up. Maybe they could wheel him out of the room for half an hour to go and get his hair cut or something so that she can read her magazine in peace. He wouldn't willingly go anywhere but surely a good carer can manage that? He wouldn't be aggressive, he would just be sad.

Maybe they'll have activities she might find interesting like a church service or some music or something and she can sit and hold his hand while doing something else, not just sitting in their living room by themselves.

Maybe they will have some dementia activities that might stimulate fil a bit, he's pretty far down the line now but surely any stimulation must be better than just sitting in your living room from morning till night.

Or maybe I'm really naive about care homes and they would just leave the pair of them sitting together in a bedroom and nothing would change.

They have plenty of money, that's not a problem.

I have to watch what I say because dh gets quite defensive if he thinks his approach is being criticised. But I don't agree with his approach any more. I think it's cruel to leave the two of them sitting there all day, especially mil who is, or was until recently, alert and interested in the world and reading the paper and gossip mags every day, keeping up with the news. Now she can't even be bothered with that.

Dh visits them once a week, they're about 45 minutes drive away. His brother lives closer but never goes to see them. It's difficult just now, everyone measures the covid risk differently. But the burden has definitely fallen on dh.

Does anyone have any realistic experience of whether a care home might improve their quality of life in any way or am I being unrealistic?

That set up sounds very much like the set up my MIL’s nursing home had.
She didn’t have dementia, but did have nursing care needs. She really enjoyed the organised activities - bingo, flower arranging, quizzes, film afternoons. And they worked really hard to ensure that all residents who would like to were able to take part.
There are some wonderful places out there.

Your poor MIL - it sounds so tough for her. I don't have any direct experience, only the experience of visiting my grandma/GMIL when she was in a home. Personally, I think a home sounds like a really good option to explore - if you can find the right one, I think it will give your MIL a new lease of life and lift the 24/7 burden from her. Certainly my Grandma's home had a married couple and the husband was much more alert than his wife. They used to sit together in the lounge but he got a lot of pleasure from chatting with the staff and other visitors - he certainly got to know my dad quite well!

I know it's difficult to visit homes at the moment, but doing some research and phoning up to speak to someone will give you a good idea of whether it's going to be the sort of place that would be suitable.

What you do about your DH, I don't know. I suspect your MIL is going to have to insist that that is what she wants to do and tell him he either helps, or she will do it anyway. Only you know whether she would be happy to do that...

Good luck.

Thats sounds awful for her. I am not sure if it would be any better for her to the same care home. Can they afford a sit in carer for a few afternoons a week so she could go out and do something for herself. How are evenings/night time, does she get any sleep? Its not really your husbands decision to make as it sounds like he is doing very little to support. Is he worried about his inheritence disappearing ?

My brother was exactly the same, he was dead against my mother going into a care home in very similar circumstances. Huge rows about, he had absolutely no idea what effect it was having on my dad. He lived abroad and had no idea how bad it had all got. In the end she did go into one and it was the best thing we ever did. She was really happy there. My dad stayed at home and really enjoyed the cakes visiting her every day and spending quality time with her. I can't help but think the financial aspect was a big factor in my brothers views. In the end he came round when he saw the improvement in her once she was there.

If your MIL still has capacity which it sounds like she does, then there isn't anything stopping her from going ahead surely? She needs to act in her husbands best interests, not her sons.

Oh my dad is still fine at home (96 on Wednesday!) on his own, but has said he wants to go there when he feels he needs to.

A bit off the topic but can social services organise a 'sitting' service. Your MIL should be able to have this as part of her carer needs. This will then free up small parts of her day or week for her to even sit outside or in another room.

Is anyone else in the family able to drop by? Do you visit or is it just your husband?

Sorry about everything though. Have massive experience of similar situations and it is heartbreaking.

Thanks for your thoughts everyone, it's good to talk about it. I feel a bit on the outside because it's not my parents.

I don't visit them, I work out of the home so I'm at a higher risk of covid really, I haven't been vaccinated. Dh works from home and has been vaccinated, he's been carefully visiting them once a week the whole time. They have had one vaccination, maybe once they've had 2 and I've had 1 I'll share the visiting. But dh is pretty paranoid about them getting infected.

They've got grandchildren in their 20s who could also pop in but they both work in shops so have lots of public contact and again dh is not keen with the covid risk. They used to have a good number of visitors dropping in but not any more.

Mil can't sit in another room. He knows she's there and calls for her and she just doesn't feel that she can ignore him, it's really hard. Again that might be easier when things open up a bit and maybe dh could take her out for a coffee or something. He did that when things eased up a bit last summer and it worked well. We're in Scotland so nothing is open and it's been really cold the past few weeks. She's not fit to go out on her own, she couldn't go for a walk or anything, she would need someone to pick her up by car and take her somewhere.

When he's not aware that she's there he sort of forgets about her if that makes sense, but if he can sense she's around then he needs her to be right with him. That's why I wondered if a care home might be able to separate them more. Their house is small, there's nowhere to get away.

The care package they receive is really good actually, they each get their own allowance of time so they end up with an hour long visit morning and evening and 2 half hour visits during the day. They also have a cleaner who comes in 3 days a week.

Mil is 97, I don't think she could manage to make the arrangements to move by herself, she would need dh to do it for her and he's just not keen. I've heard him on the phone, he talks her round to agreeing that they should stay at home. I hate to admit but I think part of it is that he just doesn't have the brain space to deal with moving them, finding a home, selling their home, sorting out all their things.

I think probably I have a slightly rose-tinted view of life in a care home and dh has a very pessimistic view, the reality will be somewhere in the middle.

To answer someone above, no dh is honestly not concerned about inheritance. I suspect his brother might be but he's not really expressed an opinion either way, he's just backed right away from the whole situation.

Dh is quite set once he's made his mind up about things. He's made up his mind that there would be no benefit to them moving, they are safe enough at home. I think he just can't bear to think about all the arrangements that would have to be made. And he's in complete denial about how hard it is for his mum. It upsets him too much to think about it.

And yes, once fil is put to bed by the carers he pretty much sleeps all night. So at least that's a good thing. He can't move around independently so he can't get out of bed and wander. I do think mil is half listening out for him the whole time though, she probably doesn't sleep very deeply. Like having a newborn and waiting for them to wake up all night.

I guess there's going to be some kind of crisis that will force some action, his mum is going to become ill and be in hospital or something, fil would have to move then, no question. Or fil would be ill. I don't think mil would like to stay at home by herself, even though she wants to get away for a while she wants to be with him too. It's a very difficult dynamic I think.

I think that if they have plenty of money I would up the care at home to give MIL a break.

To be honest, it's not much of a "burden" on your DH if he is visiting once a week for 45 mins! Is he really that concerned about COVID, if so, why does he not consider the risks that they are theoretically at from the four times a day carers? Even if they have very regular ones, with holidays and days off, that is still a lot of people from whom they haven't caught COVID. Instead of visiting for 45 mins, surely he should go and spend an entire day there and it may give him an idea of the relentlessness of what your MIL is dealing with?

Yes, after what you have written, find them a nice care home. One that has a general residential needs part and with a dementia wing / section so that she can visit. It really isnt difficult if you have the funds. You can pay for house clearances once she has decided on what she wants to take with her, pass down to family. Does your husband have power of attorney for finances? It may help doing the financial side of things? As someone who works in this area, its better to sort now than wait for a crisis when this may impact on choices . If he wants to avoid his parents being potentially split into seperate care homes it really is best to start sorting this now

Can I advise you to speak to GPs, Community Matrons and Adult Social Care? It could be worth asking for your MIL to have a carer's assessment so that they are able to record how this is impacting her health.

There may be several options to change the care package without them having to go into a home, for example, a live-in carer.

Good luck I feel for you all, it is hard work.

Are they self funding? I would look at the costs of a live in carer if they have a spare room. It will certainly be cheaper than 2 of them in a care home but obviously you need lots of savings as do not have a house sale to fund it. The carer could chat to FIL as part of her job role and this would mean that MIL could be taken out for coffee/walks etc as weather improves and lockdown lifts. I think in the circumstances, with low level of Covid and high levels of vaccination, your husband needs to ask himself to what ends is he protecting them from visitors. They are isolated and unhappy and visits from family and grandchildren at least will give them something to look forward to. It breaks my heart that all these very elderly people have been protected from covid but lived isolated and miserable lives. My parents have been furios about it and would much have preferred the risk of covid and seeing family to being safely isolated.
The other thing to enquire about as lockdown lifts is that local dementia care homes may well provide a day sitting service, where FIL is collected and looked after, given lunch and returned home in the afternoon. If she had a couple of these provided a week she may find it more manageable.
Maybe pit her in touch with her local Carer Support organisation who may have even more ideas/support suggestions.

My DM has lived in three care homes across a six year period [all Scotland] and in that time I have seen many couples, like your parents in law, all making the best of their situation. I've seen couples in adjacent bedrooms, I've seen couples in different wings, I've also seen examples where the 'well' partner comes daily to the carehome spends all day and takes all their meals there, but goes back to their home to sleep.
Ring a few carehome managers today and see what they say. They will be genuinely helpful.

I would have a chat with a few care homes to start with. It's fine if you can find one, as mentioned, with a general care home plus dementia care attached. The problem is that dementia care homes have to be more secure which can make it harder for those without dementia to have a normal life. My mum was in one which was lovely but we couldn't have the code to let ourselves out, someone had to come and open the door for us for example. Obviously, if someone had left the door open a person with dementia could just wander off...

Also, in my mum's home, some of the residents were very poorly with dementia. One lady used to beg us to go and get her husband (he'd died 10 plus years ago) and another used to tell us all about her baby (she carried a doll with her everywhere) every time we saw her. Lovely lady and of course we chatted to her on the way to wherever mum was in the building but, because of dementia, she didn't understand that we were visiting mum, not her so that could be hard to manage sometimes and the care home staff would have to distract her whilst we 'disappeared'. That can be quite hard on someone who doesn't have dementia, living in the same building.

Having said that the entertainment was great, lots of craft things to do, lots of visitors and Christmas was wonderful. On every birthday each resident got a cake (just a little one, like a cupcake, so they could blow out a candle but keep it hygienic for everyone else!)

Because of their different needs it's definitely worth chatting to different homes. Pre-Covid some places were able to take people as respite - my sister's M & FIL got a few weeks respite every year for MIL mum who lived with them. She finally decided she liked the home so much she moved in! Hopefully that respite option will open up again eventually.

Alternatively, once places open up again, it may be worth seeing if you have day centres in the area. They are places that the elderly and those with dementia can go for the day for a cuppa, company, crafts, a meal. Mum, before she got to the stage of needing a care home, resisted the local day centre for ages but we persuaded her to have one trial and she went weekly for two years! Loved it. It could be something they do, initially, as a couple with DMIL perhaps gradually backing off if he enjoys himself?

Also, when they do go back, local churches can often have befriending services. Our local one has people who will happily just sit and watch the TV with someone whilst their partner gets a couple of hours out of the house. They don't preach, it's about friendship rather than religion.

It must be very hard for DMIL.

I have a near neighbour going through similar. If your husband is happy to let a 97 year old shoulder this burden, he needs to take a hard look in the mirror.

Respite care asap for his father to let m I l breathe, catch up on sleep and time and decide what she wants to do. Such care is available now.

This will blow much of the inheritance which I hope is not a factor.

We managed to get my aunt and uncle in the same care home. They were neither and sister though. They couldn't cope at home and when it was obvious my aunt needed more care my uncle decided he wanted to go too. It worked well. They had separate rooms but on the same floor and spent all day together.
They didn't last long unfortunately but I still think it was the right thing to do.

If your husband is happy to let a 97 year old shoulder this burden, he needs to take a hard look in the mirror

That's kind of where we're at. I haven't said that to him in as many words but I'm close.

I don't agree with or understand dh's thinking but I do think he's doing what he thinks is right for them, he's not thoughtless, he doesn't have an ulterior motive, he's just wrong.

He's invested so much in enabling them to stay at home because that's what they wanted, he's arranged carers, food deliveries, walk-in showers, wider doorways, alarms, reconfigured rooms so they can live downstairs, cleaners, key safes, beds that tilt up, armchairs on wheels, sorts out all their medical needs, medicine delivery, so much. After a massive effort at the beginning it was working fine, but now it's not.

Dh just hasn't quite accepted that it's not what they want any more.
To be fair it was quite a sudden change of heart on his mum's part, it was completely out of the blue the first time, although she's mentioned it more than once now which is why he needs to take it seriously.

His mum won't consider respite. They go together or not at all. So in many ways she's not helping herself either. What a mess.

They don't have room for a live-in carer and most of their money is tied up in their house anyway.

Getting old is not fun.

I think probably I have a slightly rose-tinted view of life in a care home and dh has a very pessimistic view, the reality will be somewhere in the middle.

How much money do your PIL have because unless they are looking at the much higher range, your DH is likely to be more accurate about what they entail.

I’ve been to many, many care homes in a working capacity (paramedic) and I think the likelihood is that your MIL will do exactly as she is doing at home but without the freedom to chose simple things and comfortable familiar surroundings.

Can you get your DH to work out a rota with the rest of the family for visits (covid permitting) to give MIL a bit of a break? I’d really recommend visiting the care home first of all and bear in mind, people often deteriorate very quickly once in them so they are unlikely to ever return home once going in.

My friend's mum has been alone all through covid & was asking to go in a home. My friend didn't think she'd like it, so was still discussing it but she ended up being found dead last month.

My mil has a dementia, as yet undiagnosed & I've been told it's too much for Fil to deal with but they aren't getting help. Your DH may not want to accept that things are now reaching 24hr care time but it is cruel not to let your mil have care, company & respite too.

As an ex district nurse of many years I have seen people thrive in care homes. But chosen carefully.
Your MIL will have company, distraction, someone to oversee your FIL separate from her, comings had goings to watch, hairdressers, chiropodists, visiting nurses, activities etc etc .
Completely not fair to ask family to set up a rota. And as an elderly parent I would hate to ask that of people indefinitely leading busy lives with jobs and families. Especially when I had enough money to seek a solution elsewhere.
Average care home life expectancy is two years, but quality over quantity is what matters. Unfortunately, modern medicine has a lot to answer for.
I'm not sure I believe the inheritance thing isn't the reason behind your DH stubbornness. He's not much of a son facilitating their suffering like this and failing to respond to their needs. Your poor MIL.

When your DH visits them, how long does he stay for? Is it a nice drop in for lunch when FIL manages to be on his best behaviour because golden boy is there and MIL puts a smile on?

I'd suggest he goes and spends some extended time with them - at least 2 nights, ideally a week, to see what MIL's life is really like.

You can video call him every night and get him to mull over what his mum's life is really like when he has experienced his dad wailing, his mum not beeing able to go for a wee let alone see a friend and he has maybe had a chance to have a heart to heart with his mum.

He is of course not his mum's parent either - if she decides something, she is entitled to do it. He's not his dad's next of kin either. Both of these things might come as news to him.

It totally sounds like a good care home would suit them perfectly. A couple I know in similar circumstances did this. Initially they both slept in one room and turned the other into a sitting room and later on when that wasnt working any more they each had a single room on different floors so the wife could visit her husband every afternoon but had separate living room/dining room etc. Staff are generally very good at managing these type of things.