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Ressie

Registered User
Apr 3, 2022
18
0
I don’t really know what ‘stage’ my MIL is at…I guess i would say approaching mid-stage, although she only received a diagnosis around 1 year ago. The (not very helpful) diagnosis was apparently just ‘dementia’, no further info on the possible type. My FIL just says that they were told off would last 4 years…although i don’t know how a Dr. could actually know that unless it’s very clear what it is and such a prognosis wouldn’t usually be associated with dementia from what i understand.

MIL is 75, FIL turns 80 next month. Both worked in quite senior positions in geriatric care in their ‘former’ lives.

We first became aware of MILs problems probably 4 or 5 years ago but just put it down to typical ‘old age forgetfulness’. It came as quite a shock when FIL told us about the diagnosis because we weren’t really aware of her deterioration.

Over the last year it’s got noticeably worse and she has lost many of her former skills, most notably her ability to cook, which was previously her great passion. Apparently the Dr. foresaw that this skill would go first.

They were offered a flat in an assisted living facility 2 weeks ago after a wait of just 2 months (usual wait would be 12-14 months). This was in a residential home which offers both independent living with assistance as an when needed, residential care and specislised dementua care within more closed groups. Although in agreement in advance - albeit reluctant - when the offer came, my MIL threw what can be best described as a hissy fit and my FIL therefore turned it down. Something my FIL today admitted he regrets.

MIL is still absolutely mobile, continent etc. FIL says there is some days she can do the washing for example and others where she has no clue. But she misplaces things in the home constantly and gets annoyed when she can’t find them. She very much lives in the past (talks about my husband as if he still lives with them, but he’s not lived at home for by 30 years, tries to call her mum who’s been dead for 25 years etc) and her contributions to conversations rarely relate to the conversations we are having; more often than not these contributions are then a mixture of stories from different periods of her life.

Today i went lama trekking with her to get her out for an hour or so. The lady running the treks has experience with PWD and my be MIL enjoys going for walks, so this was the perfect opportunity to get her out and also give my FIL a break. It was an enjoyable couple of hours, but today marked some quite clear ‘lowlights’ in her condition:
- when my FIL pulled up outside or flat she claimed to never have been here before (we’ve lived here for 14 years..,) apparently she was quite insistent about it. She was last here a week ago.
- when leaving for the walk she kept on asking where her husband was, and we had to keep repeating that he was staying at home because of his bad back (the truth)
- whilst there she was fine for the first 30 mins or so (obviously needed reiteration of the instructions, and conversations were at a tangent, but generally good), but thereafter she kept looking for my FIL and we had to keep repeating that he had stayed at home and she would she him soon.
- are around an hour she was asking if i had my telephone because she wanted to phone him. I reassured her that we did but that we would be finished in 15 mins and could call him from the car on the way home.
- on the way home, and this is the first time it’s happened, she was talking to my best friend and i about her DIL (I’m her only DIL) referring to her by my name etc. but with absolutely zero recognition that it was me that she was talking about (as an aside, it’s rather interesting to know what your MIL thinks about you…unfiltered…aparently i can be quite a perfectionist in the kitchen, but that’s because I’m English 🤪)

I guess i don’t know why I’m postung this, just sharing the day and trying to make sense of it, I guess. I think the talking about me - to me - as if i were somebody else was a bit unsettling with it being the first time it’s happened. And i guess I’m also trying to work out what ‘stage’ she would be considered to be at.

I’m thinking mid-stage but then i really don’t know. I know the current stage won’t actually tell me anything about how long she’ll stay in that stage or progress to the next, and how long that stage will last, but I’m quite a logical person so information tends to help me process things a little…as does writing it down.

Is anybody able to share their experience of having experienced similar ‘milestones’ on the journey with their PWD?

(As an aside, I live in Switzerland although I’m English, my PIL are German but have lived in Switzerland for 50 years. My OH is an only child so it’s just the 4 of us in Switzerland. I know that things are different here in respect of support and processes etc. so I’m more posting looking for support from people who have been / or are currently on this journey with a PWD.)

Many thanks for reading! I know…TLDR…I’m well known for that 🤪
Ressie
 

Cat27

Volunteer Moderator
Feb 27, 2015
12,832
0
Merseyside
@Ressie
Personally, I like it when we have a bit of background as it means I won’t recommend something available in the UK.
Re stages, I found them to be too vague as dad ticked boxes in several stages.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,321
0
Nottinghamshire
Hi @Ressie

I think it’s quite difficult to decide on a stage as things don’t always happen in the same order.

Having said that your MIL’s journey sounds very similar to what happened with my mum. She was diagnosed with Alzheimer’s but eventually it was a stroke which rocketed her into late stage dementia so she must have had Vascular dementia too.

Mum didn’t stop recognising my house, or forgetting that her own mum had died until after her stroke but she was struggling in the kitchen before that. She never forgot who I was, for which I am grateful.

I agree with @Cat27 that a bit of background is always helpful.
 

canary

Registered User
Feb 25, 2014
18,448
0
South coast
Hello @Ressie

Things dont always happen in the same order with dementia, although many of the things you mention will ring bells with the members. I always remember the first time that mum phoned me and then proceeded to tell me all about her daughter (Im her only daughter). It was very unsettling.

Could your FIL re=apply for the assisted living facility? Unfortunately, with dementia they reach a stage where making decisions becomes very difficult and change frightens them. At this point (and it sounds to me as though your MIL has reached this point) you can no longer involve them in decision making - you have to make the decisions for them and just tell them what is happening, and not too far in advance either. Its often best to only tell them on the day it is happening.
 

JHA

Registered User
Aug 7, 2021
631
0
I can relate to a lot of things that you talk about. I have no idea what stage my mom is at. She was diagnosed in July 2021 with lewy body dementia but looking back the first 'real' hallucination that I can remember was in March 2020. Prior to this there were other indications but nothing glaringly obvious.

My mom regularly talks to me about me. At Christmas she had a really bad episode and wandered out of her house in the middle of the night. I ended up staying with her at night then taking her home with me during the day - this lasted for just over a week until I admitted defeat and took her to a respite bed in a care home (she is still there). To this day my mom is convinced that carers were with her during that week and on Christmas day she apparently had dinner with her old boss who was a terrible cook - the mash was cold and she only had four roast potatoes and no pudding! I was that carer and I cooked that dinner - she is correct that she had no pudding as my plans were tipped on their head when she went wandering. Christmas day was literally thrown together via text messages to my husband whilst I made sure she was safe at home.
 

Ressie

Registered User
Apr 3, 2022
18
0
Thank you to all (and apologies for the many errors in the previous post, the curse of positing on a phone, autocorrect and always failing to scroll back and re-read!).

@canary when my FIL turned down the place, he mentioned them approaching him again in the autumn which they agreed to do. Given his statement to my OH yesterday, I will try to encourage him today to reach out to the home again on Tuesday when they re-open after the holidays to explain and ask them not to wait until autumn but to consider them earlier again if something should come up. Everything is compounded by the fact that my FIL will probably need an operation on his back and my MIL won’t be able to cope at home on her own although she is insistent that she will.

The ‘home’ also has an on site bistro which is open to everyone, so i have proposed that they go there for lunch once a week under the pretence of giving them both a break from cooking (in all honesty it’s my FIL who does the cooking these days) but mainly to make it more familiar. It’s literally next door to their house, so using FILs bad back is also a good excuse. My hope is that it may help my MIL become a bit more familiar not only with the surroundings but also with the people, both residents and staff, but also help my FIL to build up a bit more of a social network as this will become more and more important as my MILs condition declines. They also host concerts etc. although these are currently only open to residents due to covid restrictions. I’m hoping that they will open up soon too.

My OH has taken more of a backseat until recently, citing my experience with my grandma (Parkinsons with LB) as to why i was more ‘qualified’ to deal with it. The fact is that we both probably saw my grandma about the same frequency and we observed her decline very much from the distance due to our physical distance, although he didn’t see her at the end as she died a year ago and only i was able to make the journey to be with her. I did send him with a list of points to talk to his dad about yesterday though as it was important for them to be able to speak openly without others around. I had to tell my husband that he needed to step up a bit because i couldn’t ‘distract’ his mum and have these conversations with his dad at the same time. I can’t do this alone and tbh i shouldn’t have to.

I understand what everybody is saying about stages and @Cat27 and @Bunpoots I’m seeing the same that there are things from different stages which I’m observing and others i’m not. Already reading other people’s experiences on here have been very helpful for me though as I’ve learned about sundowning and hosting, both of which i think I’ve observed in my MIL.

I also learned from other posts that I need to find out from my FIL how she was yesterday after returning from our little ‘excursion’. I don’t want to take her out as respite for them both if it in return makes the following hours hell for my FIL because she’s mentally exhausted from a combination of hosting and sundowning.

They are here for lunch again today, so I’m ‘curious’ (that sounds bad, she’s not a science-project, but i can’t think of a better word!) how she is doing today.
 
Last edited:

Izzy

Volunteer Moderator
Aug 31, 2003
66,663
0
71
Dundee
Welcome to the forum @Ressie. I’m so glad you found us.

I wondered if you were aware of this - apologies if you already know about it.

 

Ressie

Registered User
Apr 3, 2022
18
0
I can relate to a lot of things that you talk about. I have no idea what stage my mom is at. She was diagnosed in July 2021 with lewy body dementia but looking back the first 'real' hallucination that I can remember was in March 2020. Prior to this there were other indications but nothing glaringly obvious.

My mom regularly talks to me about me. At Christmas she had a really bad episode and wandered out of her house in the middle of the night. I ended up staying with her at night then taking her home with me during the day - this lasted for just over a week until I admitted defeat and took her to a respite bed in a care home (she is still there). To this day my mom is convinced that carers were with her during that week and on Christmas day she apparently had dinner with her old boss who was a terrible cook - the mash was cold and she only had four roast potatoes and no pudding! I was that carer and I cooked that dinner - she is correct that she had no pudding as my plans were tipped on their head when she went wandering. Christmas day was literally thrown together via text messages to my husband whilst I made sure she was safe at home.
I really feel for you @JHA, it’s so difficult seeing our loved ones deteriorating like this.

My MIL was a fiercely independent, intelligent woman, who was actually on the executive board of a private care home in her working life and has been a speaker at numerous events on geriatric care. She also led the first care home in Switzerland on their road to ISO-certification.

For all intents and purposes she was definitely the manager at home too, but now it’s all on my FILs shoulders. It must be so difficult for them both.

We haven’t had any crises like yours as yet, but I’m sure the time will come. It sounds like your husband is supportive and that’s so important.

Thankfully she hasn’t criticised my food yet, I’ll probably have difficult swallowing that as - and she got that right - i *am* a perfectionist in the kitchen 😜
 

Ressie

Registered User
Apr 3, 2022
18
0
Welcome to the forum @Ressie. I’m so glad you found us.

I wondered if you were aware of this - apologies if you already know about it.

Thank you @Izzy , yes, somebody flagged up this organisation in my ‘new here’ post and i was aware of it beforehand. I guess when it comes to sharing my thoughts and seeking ‘moral support’ even after 20 years plus in Switzerland I still revert to my ‘home’…and not only because of the language ☺️
 

canary

Registered User
Feb 25, 2014
18,448
0
South coast
I guess when it comes to sharing my thoughts and seeking ‘moral support’ even after 20 years plus in Switzerland I still revert to my ‘home’…and not only because of the language
You are very welcome here. We may not be able to help with facilities, benefits and placement, but dementia behaviour is the same the world over.
xx
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,663
0
71
Dundee
Thank you @Izzy , yes, somebody flagged up this organisation in my ‘new here’ post and i was aware of it beforehand. I guess when it comes to sharing my thoughts and seeking ‘moral support’ even after 20 years plus in Switzerland I still revert to my ‘home’…and not only because of the language ☺️

Ooops! Just looked back and it was me who flagged it in the welcome thread! Sorry! Perhaps too much Easter chocolate has gone to my head! I’m glad you’re coming here for support.
 

Ressie

Registered User
Apr 3, 2022
18
0
Ooops! Just looked back and it was me who flagged it in the welcome thread! Sorry! Perhaps too much Easter chocolate has gone to my head! I’m glad you’re coming here for support.
Absolutely no worries Izzy, rather mention things twice than not at all!

In the land of chocolate we’re eating Easter cake rather than chocolate 😂
 

Ressie

Registered User
Apr 3, 2022
18
0
So PIL came for lunch today. Tried to involve MIL in setting the table, as she likes to help and her comment the other day showed me that she feels a little frustrated that I won’t let her. She did quite well until OH got a bit frustrated because she started folding the serviettes rather than just laying them on the chargers as i had asked her to do. I gave him a look and signalled that he should cool it whilst taking it on my shoulders (“oh sorry E, that’s my mistake, i didn’t tell you that there were other ones for folding”). She went to sit back down after that rather than folding the other serviettes.

Found folded up toilet roll in the bathroom after my MIL had been…maybe those were the ‘serviettes’ she’d finished later on when there were no prying eyes?

Tried to find out how she was after the excursion yesterday but FIL didn’t really ‘bite’. I asked if it had left her tired or if she slept well after the fresh air, but all i really got from my FIL was that she had a bit of a blister on the ball of her foot (wrong socks).

OH spoke to FIL briefly when they were alone on the balcony about speaking to the home again tomorrow after what he had said yesterday. FIL point blank refused. I suspect that yesterday was more difficult that he was willing to let on and that’s made him close up again.

It’s really difficult, you don’t want to interfere in a relationship - afterall, they are still a couple and have a right to not share everything which goes on behind closed doors - but at the same time, if my FIL isn’t going to be open with us about what he - they - are dealing with, then it’s also going to be difficult for us to truly help. Because they don’t live with us we can only go on what we see and what he tells us. Without his input we will never see the full picture and like many people here he’ll probably get frustrated because ‘people think she’s not as bad as she really is’.

Just a bit frustrated really. I want to help and they need to help themselves too, but i feel like we make progress only to have my FIL not be on board again the next time we speak to him.

Somebody mentioned on my ‘I’m new here’ thread that perhaps my FIL is also suffering from dementia. Whilst it wouldn’t appear to be the case on the surface, perhaps there are very early signs of it. But then those could also just as easily be a result of stress and genuinely not knowing what to do for the best. I’m finding not being able to have open conversations with him the most challenging point at the moment, more challenging than MILs symptoms.
 

canary

Registered User
Feb 25, 2014
18,448
0
South coast
Im afraid that all the while your FIL is resisting help there is very little you can do. So often on here, things have to come to a crisis before people get in help. I suggest that you work quietly behind the scenes. Find out what is available in your area and how you access it, so that when it all falls apart you can step in quickly.


PS - mum used to fold toilet paper/tissues/paper napkins neatly and leave them in piles on the windowledge too. It seems to be a dementia "thing" - there was a thread about it recently.
 

Ressie

Registered User
Apr 3, 2022
18
0
Thank you @canary. That’s interesting re: the paper folding, I’ll have to search for that thread!

Re: working behind the scenes, yes, I’m working on it, not only re: care (they did thankfully agree to a cleaner and a gardener some time ago upon our suggestion) but also about trying to build up their network, getting out a little bit to give my FIL a change of scenery (they actually used to run the local Parkinson’s support group as a result of their own professional history, so - in theory at least - they know how helpful it can be to be amongst people who understand). I haven’t suggested a support group as such so far, as i think that would be rebuffed by my FIL who still seems to really want to deal with everything in private, but i have suggested my MIL perhaps taking part in the walks offered by the local Alzheimer society, because she still enjoys walking and he can’t walk with her. Of course it would also give him an hour or so to himself too…

He himself pointed my husband to an article in the local newspaper just this week which highlighted the lack of suitable care places for PWD and that as a result a high proportion of PWD are actually being sectioned and held in closed mental health institutions as opposed to care homes…which makes it all the less understandable that when they are offered something far more suitable they would turn it down.

I know in my heart of hearts that there’ll be a lot more going on beneath the surface than i see and I’m only looking at the logical side of it. I am trying to be compassionate but at the same time I am fearful that they are making mistakes which will be very detrimental to them both in the long term.

But of course, as you say, if he isn’t ready for it, then there is not a lot i can do but try to continue working away behind the scenes.