MIL memory loss/dementia

[redkite27]

I would love some advice please. My lovely MIL has now been diagnosed and seems to have gone downhill with her memory loss quick rapidly, to the point where she can't be alone at her house.

My DH has 3 siblings and thus far a lot of the support for MIL has fallen to my SIL, as she moved MIL to live 5 mins from hers, so that she could support her.

It has now been decided that MIL will spend time (a few days) at each siblings house on a rota system, to ensure that she isn't left home alone and has company/ spends time with her beloved grandchildren etc.

I am not sure if this is best for her because I feel that being in different houses will be more confusing but she is my MIL, so I am leaving it to DH and his siblings to decide what is best.

I would like some advice about how best to support her and look after her when she stays with us?

Some symptoms for context -
Memory loss
Repeating the same story numerous times, in quick succession
Very convincingly telling us things such as she is moving countries etc
Accusing individuals of stealing from her
Etc

Thank you in advance

e.g. what happens the first time she “escapes” from someone’s house? The first time she falls, or burns herself? The first time one of the children moans or complains or is frightened? Is someone staying home with her all day in each house or will she be left alone while everyone is at school/work/clubs? Are you all adapting your homes (either for physical impairment or to make it safe) - what level of adaptation will be “too far”.

I just wanted to add to this that - as a point of reassurance for you - and going back to what I said about the importance of getting an accurate diagnosis about the type of dementia - not everyone with dementia, even advanced dementia, will do all or indeed any of the things that are stereotypically associated with dementia. Everyone is different and types of dementia present differently.

Over time - loss of function, break down of language, loss of short term memory and fraility are all common but what I mean is (and this post was really in response to the first sentence), that although a trope of dementia is people wandering out into the street, forgetting where they live and getting lost - not everyone will do this. That is not to say no one with dementia does this -obviousy they do which is why it is a stereotype - but not everyone. Similarly not everyone forgets their wife/parents/sisters are dead for example or fails to recognise their wife/children/siblings even in very late stage dementia.

I care for someone with very late stage Alzheimers disease who never wanders or tries to leave home and if they are taken for a walk outside, know where they live - so not everyone does all of these things. The cognitive function retained and personality retained can very much depend on the type of dementia in issue Lewy body, Alzhemiers, vascular dementia and s on .

What I am saying is - don't be panicked into assuming that someone who has never done X will do X simply because they have a dementia diagnosis. You don't even know precisely what type of dementia they have - getting this information will give you a lot more insight into the likely future.

Another point to remember is that elderly people are frail and (brutal fact coming up so sorry) your relative will die at some point. When you are in this situation it feels absolutely overwhelming because it feels like facing a wall of years and years of draining caring hell but do try to enjoy the time you have left with them, because they can literally die tomorrow.

Thank you for your suggestion

It's so upsetting when you think about the reality of it. Yes, I agree with you regarding the current plan. I think for her children to all agree though, we need to trial it. One of my SIL is a GP so she agrees with me and is also trying to influence in the right way.

Thank you, this is a wonderful post. It's a very tough time and my DH is used to being a problem solver and so he is struggling with not being able to "solve" this.

Google teepa snow. She does online webinars and has some brilliant tips when caring for a loved one with dementia.
Sounds like you have a good support network but be kind to each other, it's such a long painful journey ❤️

Don't argue with them or correct them when they say something that's not true. Gloss over things they say where being truthful would cause more pain - for example, telling them that someone they ask about is already dead, rather than giving a more vague reply.

Like other posters I am sceptical about this plan, not just for the lady herself but for the toll it will take on you all. It may become more clear when it's been tried out and people see that they won't be able to answer their emails while working from home because MIL will keep asking the same question every five minutes. Or that they won't be able to watch what they want to on TV the entire time she is there. And these aren't the major things either.

Well said

I’d agree about the “couldn’t put …in care home”. I still have an expression of wishes attached to my own LPOA that tells my kids I do not want to go into care home, and spend my money on live in carers.
oh boy, I was hopelessly naive when I wrote that around 3 years ago. It needs shoving in the bin and a new one written urgently.

my dad passed away in October after 2 years with Lewy body dementia. Ok , LBD is a bit extreme, but he a menace living on his own. He was delusional, hallucinating, his REM sleep was shot to pieces and he could not be left on his own. He spent a year on nhs wards with them trying to figure out what was happening. Then he went into care. He was agitated, agressive and abusive at times. One care home kicked him out. Luckily he was then sectioned and placed in demantia specialist unit, and finally in a fantastic nursing home for the most unwell dementia patients.

I now know in a lot of cases no one gets to choose whether they go into care or nursing homes. I’ve seen a lot of very sad and desperate elderly individuals in the places dad was in. Caring for them at “home” is not an option. It’s bloody dangerous frankly. Nor can a “child” care for someone, even for a few days, that needs 24/7 support. A child has too intimate relationship with their parent and can’t separate themselves emotionally like a professional carer can. they will become ill themselves over the years this make take.

dementia is a terminal, declining condition. Just because it can take years of decline, doesn’t mean families are automatically the best people to do that caringcwork. Sometimes they’re the worse people to do it and either end up abusing the parent or destroying their own mental health or other relationships due to the emotional guilting they do to themselves.

people who guilt others into the “how you treat your parents…how your kids will treat you” usually have no bloody idea how serious dementia is. You wouldn’t suggest that with someone with terminal cancer, stop bloody doing it for dementia.

Op, I think this care plan will fall apart at seams over time. You can either say now what is the points where you can all agree this is no longer doable, and put in boundaries, or wait till there’s a burning platform . But at some point it’s unlikely to be tenable.

Thank you so much to everyone for the advice and kindness on this thread, I really appreciate it.

OP please don't hesitate to ask further questions, or return to this thread in future, lots of us have trod a similar path. Best wishes and have a manly slap to the shoulder.

❤️ love the manly slap!

This living in different hous3s is a really bad idea for somebody with dementia. I think you will all need to think again, and seek advice before you decide on. These symptoms she is displaying are really common. Thinking somebody has stolen something from her.

Brilliant advice on here. Oh apart from the sanctimonious one about treating your parents blah blah in front of your kids ...

Hiya which post was this, please?