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

I doubt think this will work I’m afraid. Familiar surroundings help them feel secure. We have to put my mum to bed like a toddler by staying with her until she’s asleep each night. It might be better for someone to go and stay with Mil at her house for a few nights.

@BashfulClam I am sorry to hear about your Mother, it's so awful. This was exactly my thought on the rota plan and I have spoken up, but only so much you can say when it is my dmil.

Make sure that the children don't have to spend time with grandma if they are uncomfortable with the changes they detect. I regret not protecting my children more (they were traumatised by some behaviours)

You are right to be concerned that constant changing of living arrangements could be disorienting and unpleasant for MIL. Changes of home can accelerate dementia progress (see threads passim about deteriorating in hospital/new setting)

The sibling with the most care responsibility sounds like they have had enough, so now is the time for you to suggest to your DH that they consider getting carers in, or explore a move to a nursing home.

You will soon find out what works and what doesn’t. To be fair, it’s so nice that’s she’s got 4 children willing to support and care for her throughout this as opposed to it all falling to one child.

It could be confusing moving around a lot but my mum didn’t move around a lot and still became disorientated, not recognising her home of 30 years so it’s no guarantee you wouldn’t have problems if she stayed put either.

Yes, you and children will have to get used to her repeating the same stories and her asking the same questions multiple times in very short space of time.

I wouldn’t argue with her about the tall stories eg moving abroad. Maybe just say that’s nice and change the subject.

When you say she can’t be home alone, why is that? Unless she’s a danger to herself, I would support her to live independently as long as possible with care visits if necessary. Dementia is a long, stressful, demanding road for all involved, don’t jump the gun and take on too much too soon.

Step 1- she needs a diagnosis.

Step 2. This is a terrible idea, taking a lady who has limited short term memory and is confused about her surroundings in the place she has lived in for years, and changing her environment every few days.

It sounds sweet that she sees all the family but has strong undertones of wanting to preserve inheritance as a top priority.

you might want to read the book Contented Dementia by Oliver James. Was a great help for me when my mother was at that sort of stage

I agree with a lot of the above. Just re children, mine (primary age at the time) were absolutely brilliant with my mum, kind and patient, matter of fact when they needed to be (“no grandma, we haven’t seen your mum because she died years ago”etc). They maintained a really positive relationship with her until a couple of weeks before she died and they gave her so much joy even if she couldn’t remember their names or how exactly she was related to them (she thought they were her children quite often).

Kids are quite resilient. However, this was probably helped by the fact that we never lived with her. She lived alone, then with care visits to her home, then in a care home. I have a friend who hated living with his grandmother with his dementia when he was young.

This complete lack of continuity is likely to rapidly exacerbate her memory loss and decline in all honesty. It's not in her best interests at all. Consistency is absolutely key for her.

Great point re the kids thank you.
Also yes, we will be having daily carers for her when she is at home.

@BananaSpanner thank you for your post and yes we just smile along with the stories.
We worry terribly about her living alone, because she has tendency to think she can do more than she can and has gone off on her own to get the bus to the shops and fallen over etc.
We also worry that she is very trusting towards people she doesn't know and will open her door to anyone.
We also just worry that when she is at home, she just stays in her bedroom and doesn't eat properly etx.

Wow what a judgemental post! To allay your fears, my MIL has no money, her children pay for everything, from buying her house 2 years ago, to her day to day spending and all bills.

I do agree that the moving around isn't the best plan, but it isn't my place to make a big fuss about that, she isn't my mother.

I am looking for any advice you may have about how to make her time with us better for her.

Thank you

I totally agree. My grandad had dementia and this was key for him. Very hard for the one person who has to provide the consistency though.
I really feel for everyone coping with the caring aspect of this terrible disease.

I have too much - 🙁 - experience of dementia, with both my Dm and my FiL. I’m afraid you are right about moving around between dcs - with dementia, routine and familiarity are extremely important.

If you haven’t already found it, the Alzheimer’s Society Talking Point forum is invaluable - whatever you’re going through, someone will have been there. It was a lifeline for me for too long.

Lastly, there will almost always come a point when 24/7 care and supervision are needed, when the person can’t safely be left alone at all. And TBH,
this sort of care - all day AND all night! (dementia sufferers lose all sense of day or night and often wander about at all hours) - is usually impossible to provide in an ordinary family setting - which will probably mean a care home.

If you do get to this stage, please do NOT feel guilty, and please don’t listen to those pious types who say, ‘Oh, I could never put a parent in a care home!’ Such people usually have zero, or very little, experience of actually living with dementia, and have absolutely no idea of what it can entail.
Good luck.

As Posted on your other thread.
It is never a good idea to remove someone with Alzheimer’s from their known environment as it will increase their confusion and cause them to become distressed. This is why when someone with Alzheimer’s in hospital will become very confused and their cognition often deteriorates significantly.
There are all sorts of tech that is useful for supporting people with Alzheimer’s to remain safely in their own home such as falls monitors, door sensors, tracking devices in case they get lost.
If she needs daily support you can get carers in. If she has over £23,250 in savings she will need to self fund carers. Make sure Attendance Allowance is being claimed to help towards paying for this. If she has under the above figure, you can contact Adult Social care and ask for a Care Act assessment. This will determine how much she is able to do for herself and what she needs support with. She will have to have a financial assessment to determine how much she pays towards the cost of her care.

Thank you so much for your post, so helpful. I will check out the forum. I am trying to support my DH and my dc's through it and that is hard enough.

@AdmittowearingCrocs sorry for the duplicate thread. I got confused about where to post!

She doesn't have any money and so via the GP, we are doing the assessment and organising care. We and my DH siblings are paying for it in the meantime and happy to continue to do this if needs be.

Thank you for suggesting the tech, I will google those items and suggest them to my DH.

I forgot to say I am so sorry, this illness is so hideously cruel.

All this^^. Have looked after both parents and MIL with dementia. Moving her around is terrible idea, she needs stability and security. My MIL could manage at home with carers, just. when she stayed with us at Xmas, she’d forget where she was numerous times in the night, panic and wander the house (front door locked) - the number of times I awoke with a start as she loomed over me in her white nightie, he face white in the moonlight staring at me til I woke up as she ‘wasn’t sure where she was’ still haunts me 😁. This proposal smacks of what’s easiest for family when it needs to be what’s best for mum.

And get an LA assessment of her. Can \ should include carers assessment too.

@SurferRona it is absolutely not about what is easiest for the family. It would be much easier for us all for her to be in her home with full time carers or in a nursing home. The aim is that she is able to continue being with her family and grandchildren. She has always spent chucks of time in her children's houses, being absorbed into family life, so she is very used to this.

That said I do agree and understand that it isn't best for her condition in terms of the consistency and I have put that view forward, but ones has to walk a tricky path when it isn't your own mother.

Is there anything we can do when she is at our house to support her? You mention the panicking during the night etc, can we help with that at all?

Thank you, This has happened, carers are being organised for her via the LA and she has them already.

Hi, no problem , just didn’t know if you had seen my other reply as I know if you are busy it can get missed.
NRS Tech supply the equipment for the local authority I was working for (ex social worker) but there are other suppliers such as Wellbeing and probably local ones to you.
Don’t forget Meals on Wheels, they will deliver a hot 2 course meal and you can also order a sandwich tea to be delivered at the same time. They will often do a wellbeing check at the same time, so for example if your MIL doesn’t answer the door when the meal is delivered the driver will contact someone, normally family to check on her.
If she is lonely Silver Line can schedule a telephone call to her once a week and RVS often have people who will visit for a chat.
Editedd to correct spelling

@AdmittowearingCrocs thank you, this is a fantastic list. I had forgotten about meals on wheels 👍🏽

PS, OP, you may well be aware already, but if a person with dementia comes out with something you know 100% can’t be true - e.g. relative or neighbour has been stealing things - arguing is almost invariably futile. Both my DM and my FiL firmly believed some truly outrageous things. Eventually I learned to say e.g., ‘Dear me, that’s awful, I had no idea! I’ll get on to the police/a solicitor first thing tomorrow!’

Because their short term memories were so short (or TBH non existent!) I could repeat the same ad lib. Sometimes these ‘angry bees’ buzzing in their bonnets could go on for days or even weeks - it did take me quite a while to learn how to handle them. Trying to convince them of whatever it was never worked and would typically just make them angry. My DM in particular would accuse me of being ‘in league with’ whoever it was!

I would just add (to the sorry list!) when we were very new to it all with FiL, we naively thought that writing down the answers for his endlessly repeated questions - on a laminated sheet that he could keep with him! - was useless. As soon as he’d turned his eyes away from it, he’d have forgotten.

You live and learn….