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Accidental Invisibles

Sarasa

Registered User
Apr 13, 2018
1,211
As well as my mum my mother-in-law also has dementia, though I don't think she's ever had a formal diagnosis. We live four hours away and my husband still works full-time so we don't get to visit that often, once every six weeks or so. I feel very much like we're the invisibles, though we don't intend to be.
My mother in law had two hip operations in her fifties (she is now 92) that didn't work well, so her mobility has always been poor, and now she can just about mange getting from her bed, to the loo and her chair. My brother in law lives and works in the same village so for the last twenty years he has been helping firstly both his parents and then when she was widowed his mother. Although he did a lot, managing the finances, doing heavy gardening, sorting out on-line groceries and visiting twice a day to check she was OK, it seemed until the last few months just about manageable. Other family members could step in when needed, and she had lots of friends that took her out and kept in contact. We took her on holiday a couple of times, and she had an old friend, widowed at the same time that she was close to and they had holidays together and trips out as well. As an ex-academic she was perfectly happy sitting in her chair reading the paper and her books. She could manage light gardening, light housework and cooking.
We noticed in the summer that she couldn't read fast enough to follow the sub-titles on a foreign language film we were watching, in November she didn't seem that engrossed in her paper and complained her eyes felt funny. When we were there at Christmas it appears that she has more or less lost the ability to read. She also has lost any sense of time, and doesn't seem to be able to prepare food for herself either. There have also been muddles surrounding dressing and she seems to be intermittently incontinent.
All this leads my husband and I to think she needs more help, and maybe would be happier in a care home. Cleaners/carers were tried a while ago but were unreliable, and she finds dealing with people she doesn't know very stressful. She is very deaf, though she doesn't realise that, and we left it too late for aids to be of use to her. From what we can gather from other family members they seem to think we soldier on as things are with the potential for a serious accident or carer breakdown for my b-I-l, rather than force her to accept help or move to a home and add to her stress and maybe cause her to die earlier than she would.
I feel that I don't really have a dog in this fight, but my MiL is one of my favourite people, who in many ways is the mother I should have had, and I want to do what is best for her. I also don't want my husband falling out with his siblings, specially his brother who I think has been amazing over the last few years, but the whole thing seems very tricky to manage without someone in the family getting hurt.
Anyone else been in a similar situation?
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,293
Merseyside
I think you’re looking at it from a different perspective @Sarasa. You’ve been through it with your Mum & she’s now in the home so you know there are options. It’s hard to see option when you’re in the thick of things
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,046
Yorkshire
hi @Sarasa
I agree with you that it's important your husband doesn't fall out with his family
maybe you both could research in the background so should a 'crisis' come along or decisions be made you can offer suggestions eg on some homes you've looked into (I'm guessing that all legal and financial matters have been organised already)
and regularly let the brother know how much you appreciate all he does with offers of help that show you do understand the challenges he faces
that way the family know you aren't invisibles and very much want to help without treading on any toes
 

Hil76

Registered User
Jan 5, 2020
50
Hi @sarosa, I’ve just written a post about my mum going into a care home, I was her f/t carer for as long as I could be, 24/7, she was the only focus of my life and I’m devastated that I couldn’t keep her with me, so I understand the issue but I really don’t think that your MiL should be living alone from what you’ve described, a crisis in this case could be fatal for her, imagine how awful your husbands family would feel then? She shouldn’t be living alone and I’m quite shocked that they could possibly think that it’s okay to just leave things. If she had someone with her that would be different but she’s on her own. It may seem cruel to them but there’s really no alternative, she’s obviously going down hill pretty rapidly, I don’t know how they sleep at night. Good grief that’s neglect. I understand your husband doesn’t want to argue with his siblings but I don’t see there’s a choice. I’m quite shocked that they would think that acceptable.
I really hope you can talk some sense in to them.
Best of luck with this x
 

canary

Registered User
Feb 25, 2014
12,183
South coast
Dont worry @Sarasa you dont come into the catagory of invisibles.
I would let your bil know that you appreciate all that he is doing/has done, but also let him know that you will back him up if he feels that he needs more support. He may just need to know that someone in the family understands
 

Lawson58

Registered User
Aug 1, 2014
2,138
Victoria, Australia
Just a side question - have you had her eyes tested? I have both glaucoma and cataracts and I am finding it difficult to read small print and the words on the TV can be fuzzy.
 

Sarasa

Registered User
Apr 13, 2018
1,211
Thanks for that suggestion @lawson. I know when I developed cataracts MiL mentioned she had them too, but the optician didn't think they were large enough to refer her for an operation. That must have been eight or ten years ago, so I can believe they are bigger now. However after last week that is on the bottom of the worry list.
MiL's only bath is upstairs, and she usually manages to haul herself up there for a bath when a family member is around in case of problems. She has one of those chairs to lower her in. Last week she decided to go for a bath when no one was around. She was found a few hours later by her son having slipped off the chair. As you can imagine she was in a state, but refused to let him phone for an ambulance. In the end he called one of his sisters and they got her back downstairs which is where her bed is.
My husband is going up there this coming weekend and is wondering if he needs to get some compassionate leave from work, to stay on a little longer. The family seem to be in a muddle about getting an assessment as they think they need to have an official diagnosis of dementia first. At least BiL now agrees that extra help is going to be essential.
 

canary

Registered User
Feb 25, 2014
12,183
South coast
That must have given everyone a fright. Im glad they managed to get her back to her bed. It certainly does sound like she needs more support, even if its a carer coming in once a week to make sure that there is someone around when she has a bath.
The family seem to be in a muddle about getting an assessment as they think they need to have an official diagnosis of dementia first.
You probably know this, but you dont have to have an official diagnosis. Ive just requested a new needs assessment for OH and he doesnt yet have a diagnosis.
 

Sarasa

Registered User
Apr 13, 2018
1,211
Thanks @canary, I know about not needing a diagnosis, but the family seem to think that is the case. MiL would be self-funding, so they can organise things without an assessment anyway. I'll send husband off with loads of advice. I can't go as we were booked for a weekend away with friends and I don't want to let them down either, so I'm off on my own.
 

jugglingmum

Registered User
Jan 5, 2014
5,737
Chester
It's so hard trying to feed info to inlaws.

My MIl isn't needing support with daily living yet, but to me there are clear signs of early stage dementia. I have drip fed info to SIL to sort out POA (more complex in Scotland which didn't help) and other issues.

OH and SIL are unbelieving about the possibility of dementia - although I think SIL is coming round to the idea and understanding of it - in our case as things are early stage the gentle support SIL is trying to engineer is all that is needed. SIL has taken responsibility for arranging things for now but this is further complicated by the fact she lives in Colorado and comes to UK twice a year at most. We are reverse to you in that OH had a dreadful childhood and as a consequence doesn't feel a lot of empathy for his mum so this will complicate things more.

I'm sorry you are going on a weekend away with friends without OH. I am going away this weekend without my OH as we have an elderly dog and she has random accidents so impossible to take her with us and the people who had her in the summer are on the weekend away. I am really going to miss him, and hope the kids don't play me up (kids being 14 and 18).
 

Sarasa

Registered User
Apr 13, 2018
1,211
Well husband went off to see his mum, and I had a FaceTime chat with her on Sunday morning. She seems no worse than at Christmas, and though that isn't good, it is better than I though things might be. Husband says she seems to go to bed in her clothes now, and is borderline incontinent. My BiL has organised an assessment for his mum with SS, which we are obviously not telling her about until it happens. It'll be interesting to see what they say. I'm assuming she'll be self-funding, but my husband thinks, that apart from the house, she doesn't have many other assets. There also seems to be a question mark over whether any of them have Power of Attorney. I'm not sure if it is too late to get that done, but if they haven't, it would be worth a shot.
When he got back we went for a walk. Halfway round he stopped me, gave me a kiss and said how strong and sensible I'd been getting my mum in a home. That is very unlike my fairly un-demonstrative husband. I told him that his family are just going to have to put their emotions to one side and do what is best for her.
 

anxious annie

Registered User
Jan 2, 2019
256
Hi Sarasa
It isn't easy for you and your husband caring from a distance, but at least you have the experience of sorting out care for your mum and know the pitfalls. Hoping that the assessment with SS goes well and support is put in place for your MIL and BIL. Your family will hopefully see that it's now a case of what's best for MIL, and not necessarily what she wants.
 

Sarasa

Registered User
Apr 13, 2018
1,211
We went to see Mother in Law this weekend. In lots of ways she seemed better than at Christmas and was actually keen to go out in the car to a pub yesterday. Today she didn't seem quite so bright and brother in law, who is her carer seemed surprised that she'd actually wanted to go out yesterday,
The SS assessment has happened but from what I could gather (MiL was in the room) BiL has declined any extra help. My husband's younger sister is now coming over three times a week to help out too. She was also there today, but it is tricky to try and talk about things in front of their mum.
My husband is intending to retire this year (though I'll believe it when it happens) and that will make visiting easier. In the mean time he's going to try and get there once a month.
 

anxious annie

Registered User
Jan 2, 2019
256
Hi Sarasa
I'm glad that your MIL seemed brighter when you saw her, but you know only too well how things can change.
What a shame that your BIL declined any extra help as I'm sure it would be useful. I can't imagine that your husband's younger sister will manage for long to visit three times a week for what could be quite a long time, things eventually take their toll.
I used to stay with mum once a month before she moved into the care home and this was a real struggle when I was working. It got easier when I retired, but after 2 and a half years of going up and down the motorway I did start to resent it. We had my MIL to visit monthly too so it impacted on our life and the things we planned to do. that probably sounds a bit selfish, but I just hope that you and your husband can manage to have the retirement that you have planned.
 

annielou

Registered User
Sep 27, 2019
1,023
Yorkshire
What a tricky situation. X Maybe now younger sister is also visiting 3 times a week things may change without a crisis happening. MIL and BIL will have another person around offering a bit more help to start with. Then maybe after seeing things first hand more regularly younger sister might start to see things differently to how rest of familly do now and that may lead to more discussions and hopefully may mean someone else has same thoughts as you on what MIL needs. Hopefully it may lead to family coming to decision MIL needs more than they can provide and accept outside help or agree to a care home.
Its good to hear MIL didnt appear worse at the weekend, I hope things stay that way and she gets what she needs with all family agreeing X
 

Graybiker

Registered User
Oct 3, 2017
194
County Durham
As well as my mum my mother-in-law also has dementia, though I don't think she's ever had a formal diagnosis. We live four hours away and my husband still works full-time so we don't get to visit that often, once every six weeks or so. I feel very much like we're the invisibles, though we don't intend to be.
My mother in law had two hip operations in her fifties (she is now 92) that didn't work well, so her mobility has always been poor, and now she can just about mange getting from her bed, to the loo and her chair. My brother in law lives and works in the same village so for the last twenty years he has been helping firstly both his parents and then when she was widowed his mother. Although he did a lot, managing the finances, doing heavy gardening, sorting out on-line groceries and visiting twice a day to check she was OK, it seemed until the last few months just about manageable. Other family members could step in when needed, and she had lots of friends that took her out and kept in contact. We took her on holiday a couple of times, and she had an old friend, widowed at the same time that she was close to and they had holidays together and trips out as well. As an ex-academic she was perfectly happy sitting in her chair reading the paper and her books. She could manage light gardening, light housework and cooking.
We noticed in the summer that she couldn't read fast enough to follow the sub-titles on a foreign language film we were watching, in November she didn't seem that engrossed in her paper and complained her eyes felt funny. When we were there at Christmas it appears that she has more or less lost the ability to read. She also has lost any sense of time, and doesn't seem to be able to prepare food for herself either. There have also been muddles surrounding dressing and she seems to be intermittently incontinent.
All this leads my husband and I to think she needs more help, and maybe would be happier in a care home. Cleaners/carers were tried a while ago but were unreliable, and she finds dealing with people she doesn't know very stressful. She is very deaf, though she doesn't realise that, and we left it too late for aids to be of use to her. From what we can gather from other family members they seem to think we soldier on as things are with the potential for a serious accident or carer breakdown for my b-I-l, rather than force her to accept help or move to a home and add to her stress and maybe cause her to die earlier than she would.
I feel that I don't really have a dog in this fight, but my MiL is one of my favourite people, who in many ways is the mother I should have had, and I want to do what is best for her. I also don't want my husband falling out with his siblings, specially his brother who I think has been amazing over the last few years, but the whole thing seems very tricky to manage without someone in the family getting hurt.
Anyone else been in a similar situation?
As the sibling of an invisible , it was interesting to me to read your post.It seems you & your husband are doing all you can in the circumstances, wish I could have said the same about mine, but I can understand your difficulties. I thought I might be able to impart a little insight from ‘the other side’ ;)
One thing my sibling did (eventually) do, was offer to make phone calls, send emails, do online research, shopping etc. This was greatly appreciated as it’s not my forte & took a bit of the stress away.
Things I would have liked them to do?
Keep in touch more regularly & listen to the day to day problems.
This may be a tough one, but accept that the main carer knows more about the situation than you & feels more responsible.
The main thing though is I wish they’d asked more. Asked how things are, how I felt or was coping & asked what they needed to help. Ask not like you ask someone how they are when meeting in the street, but genuinely ask.
Offer a break, a holiday for them, a night staying over, anything.

I’m not saying you don’t do these things already, they’re things I would have liked.

My invisible has lived abroad for 30 years & in that time visited maybe once every 2/3 years. Abroad, but less than a 2 hour flight away.

Anyway, sorry for ranting.
It seems you have the best intentions & the right approach so I wish you all well, it’s not easy to keep relationships on good terms through all this.
 

Sirena

Registered User
Feb 27, 2018
2,201
As BIL has seen SS but declined help, there is no more the family can do at the moment. I think the only way anything will change is a crisis such as a fall which ends up in her being hospitalised. Of course a fall could be the end of her, but she wants to stay home, he wants her to stay home - and she could just as easily have a fall in a CH (my mother has had several, including breaking her hip).

I think whatever decision is made you will all probably feel uneasy about it. As long as BIL wants to continue, all you can do is support him, as I'm sure you're already doing.
 

Sarasa

Registered User
Apr 13, 2018
1,211
Thank you everyone for your thoughts. I think I understand where my BiL is coming from. My MiL can get very distressed around people she doesn't know, and even sometimes appears uncomfortable with those of us she does. I think BiL finds it easier to do the caring himself and not have to deal with an upset mother if a carer didn't quite work out.
Eventually it will get to a stage where extra help is inevitable, as @Sirena says an accident or a serious infection that ends her up in hospital might change things.
As it is we try to do what we can. We may be moving nearer MiL later in the year, and if we do then that will make visiting a lot easier
 

Sarasa

Registered User
Apr 13, 2018
1,211
My husband went up to see his mum a couple of weeks ago and things were pretty much as I've described above, MiL just about managing, BiL refusing help, younger sister coming over to help out. At the time it was obvious that we were heading towards a lockdown which is why husband went while he still could.
Yesterday we had a phone call with a very upset older sister. she'd just lost her temper with her younger brother over his refusal to have any help in for his mum. He is still working and his boss doesn't seem to be paying much attention to social distancing rules etc. If the boss had invested in some laptops he could have easily done his job from home. Older sister is extremely worried as to what happens if he gets ill. She thinks one of the rest of us will have to go up there to stay with MiL. She doesn't think she would find it easy as she has back problems, so that leaves husband or me (younger sister works in care so is needed in her job). I'm happy to do it, but not at all sure how we'd get there as we don't have a car. I also think if BiL or his wife came down with Covid-19, MiL would probably already have it anyway.
We're having a FaceTime chat with her later today, so maybe more will emerge about BiL's thinking. The whole family politics thing is a nightmare!