Advice about caring for MIL and family disagreements(50 Posts)
DH and I are in a bit of a quandary and I was hoping for some views from folk more experienced in caring for people with dementia than we are.
Quick background: MIL has dementia. She has lived in a lovely two bedroom flat in London for 40 yrs and can function pretty well. She has a lodger who helps out a bit making sure she has food etc and she couldn't live entirely on her own as she needs to be reminded about Drs appts and things like that.
DH visits every week or so and she is usually settled and cheerful. She also comes to see us and our DC every now and again.
She knows her way around the area and knows her flat inside out so feels very secure there. She knows all the local shops and cafes and some of the shopkeepers and cafe owners know her.
Friends drop in quite regularly and she goes to a church just across the road where there is a friendly congregation and she seems to really enjoy this.
DH's siblings visit once a month or so but don't live in London - although it's not a huge trip for either of them to see her.
As well as her lodger, friends and DH, she has a carer who comes in once a week - MIL really likes this woman and was very involved in choosing her.
We have recently had her assessed for additional NHS support and it looks like she will be eligible for some help getting to some support groups near her and some help with transport to and from the GP, dentist etc.
So here's the issue. DH's brother wants to move MIL firstly to live with DH's sister while MIL's flat is sold, and then to a three bed house nearer BIL. He believes it would be better for MIL to live somewhere where she could see more of BIL, SIL and their kids.
DH and I think MIL is better off in familiar surroundings for as long as possible. As and when MIL declines, we think we should get a live in carer until MIL needs to be in a care home - if we get that far.
What BIL is proposing involves two moves and will take MIL away from the people and places she has known for 40 yrs. BIL seems to think that being closer to him will outweigh this. He also doesn't really have a plan for her ongoing care. Presumably we will have to pay for a live in carer there as well only MIL will be living somewhere she doesn't know.
MIL has also consistently said she doesn't want to move as she feels safe and at home in her flat.
I am a bit out of my depth here as I genuinely don't know if being closer to some of her children and grandchildren is better than staying in her own flat. I know what I feel is right but I don't know enough about dementia to be sure. I am happy to be told I'm wrong btw!
Any and all advice gratefully received and thanks for reading my long post!
She is far better staying where she is until she needs a care Home
Do any of you have power of attorney? They would need to be able to demonstrate that the move is in her best interests and what she would have chosen to do herself were she still able to. It does sound as if she is saying she wants to stay where she is for now.
Having said that if you want her to stay near you then you do need to accept that you will probably have a larger support role. Don't just consider the hours that they spend with her, also consider the travel time that they need to put in to visit her. Say if they live 2hrs away that is 4 hours extra they invest for every visit, it might 'only be once a month' for half a day but that could be a similar amount of time, if not more as your dh spends popping in for an hour once a week if he lives 10 minutes away.
Thanks random ... that's reassuring to hear x
She doesn’t want to move.
Unless you all think that she is unable to make this decision herself, the decision is hers.
And moving someone against their will after 40 years no matter how good the intention is cruel.
shouldwe yes that's a good point. We are thinking of working our hours and childcare around DH spending at least half a day with her a week
To clarify, is he wanting the end result to be MIL living with family, or MIL to be living alone in a 3 bedroom house?
worried thanks for that. It does seem cruel ... she really doesn't want to move
gummy alone in a three bed house... presumably though she would need live in care
I would think it would be best for her to remain in her current flat for as long as possible. At some point the helpful lodger would have to be replaced by a formal live in carer, but uprooting her will likely make her more confused.
People often think of dementia memory problems as "forgetting things" but actually what happens it that memories are failing to be made. She knows her way round her familiar neighbourhood in a way that she will never learn a new area.
It's well documented that moving dementia patients from familiar surroundings often brings on a rapid decline. Just seems mad to move her when she is enjoying a good quality of life now - what we she do when she's moved, how would she even attempt new friendships
Then he's being ridiculous. She can't live alone in a 3 bed house when she's lived in a flat with another person for many years. Why does he think that's a good idea?
breakfast that's a good point ... so she'd effectively feel unsettled and unsure of where she is all the time? awful...
It really would have suited my siblings and I for my mother to move closer to us (300 miles away) but she would be living in an area that had zero significance to her past life
random I don't know feels like a lonely future for her.
gummy I have no idea what he is thinking to be honest. Part of me wonders if he is being naive and thinks the idea of a nice house in the country with a garden is what he would choose over a flat in London but obviously her perspective is different.
I think you need to spell it out for him that she will not cope. She won't remember where she is, she'll have much more to clean/keep tidy, more likely to injure herself on the stairs, no friends, nowhere to go where people will keep an eye on her.
Unless he is planning on having her live with him it will be a disaster for her health. Even if she did move in with him she would still be more isolated than she is at the moment which can't be a good thing for her.
I am an only child and worked hard to get my mum to move near to me and her grandchildren. She refused and stayed in her own familiar home, now with a live in carer. I sympathise with your bil's intentions but I am so glad she dug her heels in. As her understanding is fading, familiar routines help her hugely. (She became incontinent, for example, during a respite residentual stay , but is continent at home in a familiar setting)
Hate to suggest it... has he got half an eye on her money/property?
It seems utter madness to move her to an unknown 3-bed house from a flat where she’s feels safe and secure. As PP said, dementia is about being unable to form newer memories. That’s why you get the stereotype of people remembering their younger days, people who have passed away etc.
He is being naive.
She doesn't want to move. If she has capacity to make the decision at the moment, and it sounds like she does, then she doesn't move.
If she doesn't have capacity, a best interests decision needs to be made. This would consider her wishes - which are not to move. Plus also the fact that she can probably live independently far longer in her current environment where she knows her routine, knows the streets, is recognised by people, has a familiar carer etc than by moving to a strange area and strange house. She will not adapt in the same way as someone without dementia. So a best interests decision would be - she doesn't move.
All of this needs spelling out to BIL who prob hasn't realised that her friends are prob far more important in her life than he is, which is hard to hear.
My FIL has dementia and is now in a home. He recognizes everyone from his church who visits but not his children and grandchildren. Harsh for them but an accurate representation of who he saw the most of week in week out in the last few years. We go with the flow when we visit and promise we are still devout Christians - it makes him happy.
gummy I think she really would struggle. The sense of relief she has when she gets back home is palpable and the thought of her never having that again is heartbreaking.
fresh MIL did get "caught short" a few times when BIL took her on holiday for a week. He said it was because she was eating different food but maybe it was also because of the unfamiliar surroundings and routines.
Secondary well I do wonder. Just the sheer insanity of what he is suggesting makes me suspicious tbh but I wasn't sure if I was being really unfair and misunderstanding dementia.
Anna yes I wonder if there's a bit of that here. I think BIL wants to believe he and his kids are more important than MIL's friends and you are right, it's hard to hear that that's not the case. But that's just one of the cruelties of dementia I suppose
I don't know whether BIL doesn't understand or just doesn't want to grasp the reality of the situation
I think its not a great idea. If she is currently orientated to her home and the people around her, she will notice when they are gone and it is likely to cause great confusion for her (something you are trying to avoid as confusion is distressing). There is a chance that a move could trigger delerium - mostly seen in hospital settings, but they think that one of the triggers is the removal from familiar surroundings. Delerium can cause substantial and rapid drops in cognitive abilites which do not come back when the person is acclimatised. Interestingly when she is no longer orientated to place and people, a move is less confusing.
My father has dementia - still early stages.
It would be extremely cruel to move her away from her own, familiar home and possessions, her friends and neighbours, and her church. She would inevitably become extremely confused and her physical health would decline.
I'm sorry, but your BIL is either incredibly naive, or has ulterior motives - which may not be financial.
Thanks sea and MarSee delirium definitely sounds like something we want to avoid! In my more charitable moments I think BIL is being naive, in other moments I think he's just being insane
My mum had dementia and lived at home with my dad. When he was hospitalised for a period of 3 months she had to leave her house and come live with me. In her own home she was in a routine of sorts and coped by sleeping for long periods. As soon as she left her familiar surroundings she was immediately vulnerable, frail and frightened. Her behaviour shifted and she became agitated and violent. She banged on windows, threw water, threw punches and tried to escape. Within four weeks she had to be sectioned. We were totally unprepared for mum's reaction. My dad fell downstairs three days after returning home and died. We didn't have POA for mum. She was 'looked after' for seven months in different mental health units and hospitals until we were eventually granted guardianship. If your MIL is managing and safe and additional care can be put in place then my advice would be to leave her be. Surely that would be her wish? Even now nearly three years later I don''t think my DBro fully 'understands the illness that is dementia. DM is in a carehome and medicated. The kindest thing you can do for your MIL is to preserve her independence as long as possible. Eventually things will change but now doesn't sound the right time to move her.
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