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

@WhoPutTheBomp thank you 💐

@GETTINGLIKEMYMOTHER I appreciate you sharing your story's, it really helps.
Yes, we took that approach with my Grandad too. He went back to his army days during WW2 and was insistent that we help him get back to his base. So much so that we had to agree to help and make pretend phone calls to his commanding officer to say that he was ok.

My father had dementia. As long as he was in his own house following a daily routine he managed okay with help. If he had to be away from home, even a hospital appointment, he would get confused and upset. I doubt this plan will work, it will just increase her confusion. A daily routine with set things happening at set times really helps.

The best thing for people with dementia is their own environment, routine and stability. Moving her from house to house is an absolutely terrible idea and likely to be very distressing.

Imagine how you as a well person would feel if you lived like that?

wrt her visit/s to you:

Exterior doors locked at all times, you may need to work out where best to keep the key (high up on a hook?) and maybe fit a chain.

Switch off the oven and hob after use, unplug the microwave after use, just a few minutes delay in her attempting to cook something might give you time to divert and distract.

Meaningful activities:
Folding tea towels. (you might be able to repeat this often, if short term memory is very short)
Peeling potatoes.
Pairing socks.
Washing up, but be on hand to prevent scalds from hot water and keep sharp knives and glassware away.

Again, I agree and am not supportive of the plan and I have said this but it isn't my decision sadly and so looking for any other suggestions for how to make it better.

@WeArentInKansas also to add MIL has always spent time at her children's houses and likes to do this. Culturally this is what happens often. So when she has been well she has enjoyed spending a week here and a week there.
I totally agree that it isn't the best plan now though.

Thank you so much 👍🏽

I am so sorry to hear about your father. Thank you for posting

It might help a bit if all siblings could agree to the same set times for meals and other regular routines for her when she is staying with them?

@redkite27

first thing is you need a proper diagnosis - does she have Alzheimers, vascular dementia, lewy body dementia etc. This matters because a) some types can be delayed worsening by medication and b) the trajectory and eventual symptoms are different. Someone with late stage Alzheimers is likely to be easier to manage at home than someone with late stage vascular dementia for example.If you can afford to pay privately, do it that way. if you are NHS, there is a cost cutting exercise in play with old people so they dont want to prescribe anything or even give a proper diagnosis - just get a memory test and tell everyone they have dementia. don't be fobbed off. you need a brain scan and blood tests too.

second thing, to stay at home she will need carers - two ways to do this either through an agency or privately engaging people yourself. latter is better because you can get consistency of staff, find people she likes and control the quality. Big downside though is it is very difficult and challenging to find trained people of good quality with dementia experience (advertisting/word of mouth) and then you (or whoever is in charge) needs to pay and manage them. it's worth it if you can afford it and have the perseverance to do it - because they you end up with a good team of hand picked people. It also tends to be cheaper as you pay them less per hour directly than you pay an agency.

Agency has benefit of guaranteed cover so if someone calls in sick, they should send someone else - but downside is much more expensive, very high staff turn over and (sorry to say) generally poor quality of staff - very few who are really committed to caring as a vocation and lots of people with poor english skills.

Great idea thank you. Trying to keep her routine as similar as possible in our houses

@WeArentInKansas thank you for your message. So helpful. She has a diagnosis of dementia which was via her nhs doctor, so maybe we do need some more specifics privately.

Currently she has carers being organised for her via the gp and so in the meantime we are paying for carers via an agency. So I fully take on your thoughts about that. Do you think best to stick with the private care, rather than moving over to the LA ones when they are organised?

Sympathies op, it sounds like you are trying to do the right things for your mil in the face of quite difficult opposition. You have had a lot of good advice here.
My suggestion, if moving her around your homes is what everyone else is set on, is to try and keep some familiar things moving with her. So a favourite bedcover, have the same things on the bedside table, preferred cups or plates, photos from her home, that sort of thing. If it’s possible to keep the room layout the same that may also help. It meant my mil had a safe space when she was visiting (although that was only in 1 house, and then in a respite home).
I guess it’s possible that it could add to the confusion if she then leaves the room and the rest of the house is different, but it seemed to help here.
I’m presuming she will have her own space in the different houses?
Keeping her busy is a good call. Does she knit? Mil made endless holey scarves but it kept her hands busy and helped her to focus, it was fascinating to watch.
The stories, you have to just let that wash over you. Neutral comments, just to acknowledge her. We made the mistake at first of trying to correct her over who was alive and who was not, and that was just upsetting so we stopped. If her brother (long dead) visited, then great.
Child proof everything. Cupboard locks etc. Hide the iron. She will want to do things and keeping her safe is the main priority.
It’s possible that you might need to let the siblings try this plan and realise its not helping for themselves though. Good luck.

@Idontevenknowmyname thank you for those tips 👍🏽
I think you are right, all I can do is watch it go ahead and see how we get on/help to adjust plans when needed

Do you think best to stick with the private care, rather than moving over to the LA ones when they are organised?

This is complicated and really about money. I'm afraid I don't currently have time to go into it all but in short if you are talking about care agencies - whether you do it privately or through a local authority, they tend to use the same agencies. It will be marginally cheaper through LA but you have no control at all over the agencies they use. Privately will give you more control, but you will pay far more and ultimately at the whim (either way with LA and privately) of the agency and whoever is available. It's very difficult to get guaranteed consistency of good staff with demantia training (Which is essential in my view) via an agency - because they work on a shift model ( 1 hour or 2 hours here , then move to next shift) and inevitably people are sick or run late due to emergency so then you get some random.

Like I said, if you have the willpower, money, time and perserverance, the best dementia care at home is to organise it yourself so you can only employ or engage people who are experienced, qualified, dementia training staff. I won't kid you that this is an easy job. It is very very very hard (as finding people yourself is difficult) but if you stick with it, you will end up of a team of people who can grow with the patient as their needs grow. not many people have the appetite or money or capability or time or energy to do this. Which is why agency care is so ubiquitous.

The other thing you need to look at if you haven't done it already is get the property assessed by occupational health for future planning. If there are stairs and she can get up and down them now, what will you do when she can't? stair lift? bed downstairs? is there a loo downstairs? do you need a hospital type bed (raises and lowers for when there are personal care needs like changing a pad/nappy or bed washing)? hoists are another option as is a standing aid called a Sara Steady. there is a lot of equipment and stuff available but you often won't know until either the point of needing it has passed and you are desperate or someone tells you what is available.

@WeArentInKansas thank you so much for taking the time to pass on that info 💐

OP, does your husband agree with you, or are all the siblings agreed on moving her round? You might want to think about (as kindly and supportively as possible) what evidence there will be that this approach isn’t working, and what might be a good step from there. Either to get your own DH to think through, or for him to discuss with siblings when it comes. I can see it getting very tense and difficult if some siblings are “coping fine” while others aren’t and/or are convinced it’s not working for MIL.

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”.

@Serriadh my concerns are exactly what you have outlined. They haven't discussed this what if scenarios yet. My DH agrees that it isn't the best thing to have her moving round and he thinks she is better in her house with carers but it's hard when the other siblings disagree and he wants to be seen as being supportive and doing our part.

Oh OP, I'm so sorry. It's awful to deal with, and sometimes it's easier with fewer people involved.

I do share your reservations, it certainly wouldn't have worked for MIL, but I agree that you will probably have to bite your tongue a bit and let DH and his siblings see how things actually work out. All you can do is try and keep things as consistent as possible when she is with you.

We went through this with MIL, who was also very paranoid about things being stolen. This resulted in her hiding things so they couldn't be 'stolen', so try and keep track of her bits and pieces when she is with you.

Perhaps have a photo album of memories that can be taken from house to house, but she may not be quite ready for that yet.

I hope everyone agrees on a better solution soon, but you may have to go through some chaos before everyone agrees what that is!

The last sentence is unnecessarily cruel and hurtful. Give your head a ficking wobble, It’s a family dealing with grief and trauma and trying to do the best for someone, That’s a really fucking awful thing to say.

@redkite27 for MIL, no, there wasn’t anything we could do to make her easier in our home. She was from then only ever at ease in her own home. We stopped having her over, we went there instead.

The other thing the family need to think about is impact on relationships too. This proposal (and yes, it is easier for the family to shove her from pillar to post, rather than setting up a clear rota where people go to her with professional paid for care support already in place!) makes everyone carers. MIL, once into a local good care home, was then able to have again proper mother- son and daughter relationships again. They stopped being just carers. In contrast my parents leaned so heavily on family to support them, fought against professionals helping, making their grown up children shoulder the caring burden, never agreed even to respite care, it nearly drove one of them to a breakdown. Do not underestimate, it is physically and emotionally the toughest thing to do.

MIL had the better care, and better relationships, was happier and more content in her last years than my parents.

Sorry to say but she will do much worse with going between houses . It would be better for her to remain at home with someone moving in ( on a Rota if you want to share care )

That's a horrible thing to say re inheritance, OP's family sound very caring.

I know the family think they're doing their best to support their mother, and to share caring responsibilities, but as PPs have said, moving her every few days is very likely to cause distress and confusion.

She may be used to staying over in your homes, but she is going to forget your homes and forget who you all are, which will be so hard for her to cope with.

I think you need to get some expert advice - you're all very well meaning, but at some stage a care home can be the only way to keep her safe.