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Dementia and Alzheimer's

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Original poster

I pray every night for the end

38 replies

Nanatokidsdogshampsters · 04/02/2023 16:02

Mum went into a care home last may as she was unable to live on her own anymore.
The few months before she had blown up the oven by leaving the gas on.
Burns on her face. Fell down the stairs a couple of times in the night. etc
The home she is in is lovely and clean, staff are caring and kind.
Food is fantastic especially the cakes (mum always had a sweet tooth)
Large room with own toilet.
Now from being a lovely lady she now snaps at everyone. Won't have a bath or shower if she can get away with it. Wears as many clothes as she can won't take her coat off ever. Carrys a handbag but if you touch it she starts screaming.
Falls asleep as soon as she sits down, wanders around most of the night.
Only sleeps in bed for 3-4 hours.
Can't remember who her children are never mind grandchildren/great grandchildren.
Can't even remember being married.
The home and ourselves try put things in place to help her and she either throws them away or somehow breaks them.
We know she is in the right place but it gets harder and harder each visit.
One of us goes every day.
But and it's a big but she remembers my husband and her sister.
Horrid horrid illness.
At 87 health wise is fit just her mind is gone.
How long will it go on for.

OP posts:
TightFistedWozerk · 04/02/2023 16:10

I can't tell you how long it might go on for, I am so sorry.

What I can tell you is that it is okay for you to not visit so often. Not that you are asking permission to do so, but if you need someone to say no need to visit so often, then I am that person.

Have a hug - it is the most horrible dreadful disease.

Whatislove82 · 04/02/2023 16:11

Does she have a DNR in place?

carkerpartridge · 04/02/2023 16:15

It's a cruel disease isn't it. I lost DM last year and can definitely sympathise with how you are feeling.
What is your mum's health like apart from the dementia? Mine was quite frail for a few years but it seemed to be the impact of Covid that got her in the end. I feel like a lot of people keep going until something like flu, a chest infection, Covid etc seems to be such a shock to their system that they die.
Visits are hard, I felt guilty if I didn't go every day but they were emotionally draining for me and I'm doubtful if my mum got much benefit. It felt like it was my way of trying to give her an hour's attention and distraction. She was in a home for a few months, if she had lived longer I feel like it would have been impossible for me to keep up daily visits. Is there any chance other family and friends could share the visits to lighten the load?

Kangarude · 04/02/2023 16:19

It is a cruel and terrible disease. My MIL had Alzheimers and we 'lost' her years before she actually died. Obv don't know how long your DM will last but sending you strength Flowers

Original poster
Nanatokidsdogshampsters · 04/02/2023 16:25

@Whatislove82 yes everything is in place. The only medication she takes is for the dementia. Bp perfect, heart perfect. Before the dementia kicked in she hadn't seen a gp for 35 years. They took bloods but had nothing to compare too.

@TightFistedWozerk thank you for your hug and permission. I have 2 brothers who are very good in visiting as well plus her sister.

If mum knew what was going on she would be mortified.
This was someone who was the first on a dance floor.
Went to the theatre. Loved to shop. Hunted for bargains in charity shops.
Now won't go out of the building even into the garden.

OP posts:
verdantverdure · 04/02/2023 16:25

It's awful isn't it?

The consultant told us not usually more than 12 years from diagnosis. Less generally.

Whatislove82 · 04/02/2023 16:30

If it’s any consolation, the deterioration tends to be very quick.
went for physically fit to…

So it began as difficulty to swallow, so liquid diet.
then chest infection and couldn’t swallow
and then it became pneumonia

maybe 4/5 weeks

Daleksatemyshed · 04/02/2023 16:50

I'm so sorry @Nanatokidsdogshampsters it's an absolutely shit disease and so hard for the family. I looked after my DM at home for six years with the help of some lovely carers and it was so hard watching the physical person hardly change but her personality just whittle away.
Don't feel guilty please, if the visits only upset you, and your DM doesn't seem to enjoy them, then you have nothing to feel guilty about if you go less often.
I will say to you something I won't say to most people, because I know you will understand - when my DM died suddenly I felt relief, just utter relief than neither of us would have to go through anymore.

TightFistedWozerk · 04/02/2023 17:20

yy daleks I understand about the relief, the huge enormous relief. I too cared for my person with dementia for years before a sudden final illness took them mercifully swiftly in Spring 2021.

Nana do lean on us here, there are so many in this club, we understand and don't judge.

Thenewsisnext · 04/02/2023 17:21

I will say to you something I won't say to most people, because I know you will understand - when my DM died suddenly I felt relief, just utter relief than neither of us would have to go through anymore

Totally understand that, so sorry for everything you went through xx

Daleksatemyshed · 04/02/2023 17:30

Thank you @TightFistedWozerk and @Thenewsisnext . I hope the Op will read our messages and understand that no one here will blame her for finding this hard. When Covid and lockdown happened I felt so badly for anyone trying to deal with Dementia, I know my DM would not have understood or coped.

Original poster
Nanatokidsdogshampsters · 04/02/2023 18:12

Covid was a big factor in her dementia.(Rules that we followed which scared her)
I don't live near so wasn't allowed to travel as older brother was her point of contact.
I phoned every evening.
Then when we were allowed to visit I had cancer so was in isolation for nearly a year.

Brothers and I do have a light hearted sense of humour.
My younger brother was the favourite 10 years younger than me 12 older brother.
Every time little one goes mum asks him to put a dress on as she wants to check if the colour suits him.
6ft ex soldier. Size 46 chest.
If she was copus mentis she would laugh and laugh. Mum is 5ft size 10.
Mum thinks he wears her clothes if they are in the wash.

OP posts:
Daleksatemyshed · 04/02/2023 18:26

Strangely enough @Nanatokidsdogshampsters I had cancer when my DP and I moved in with DM. I'd visited most days but knew the treatment would stop that unless we actually shared a house. I hope you're now in remission.
I think it was a sick sense of humour that kept us going, that and learning to lie really well- where's your Dad? he's gone out, when he been gone for years.
Having someone close to you with Dementia is a learning experience,

DillDanding · 04/02/2023 18:33

Isn’t it awful? I have 2 friends that have parents with advanced dementia. One is in a home (almost 2k a week) and the other is cared for at home.

Its particularly hellish for my friend who cares for her dad at home. She’s on her knees, looks 20 years older than she is but is determined to look after him until the end.

And yes, they both beseech the heavens daily that ‘this will be the night’.

Daleksatemyshed · 04/02/2023 18:55

I don't want to take over the thread, and @Nanatokidsdogshampsters please forgive me if I am, but there's so many things we could all say that we don't feel comfortable saying elsewhere.
My DM would have been 96 today, I'm sad because she was my DM but it's taken a few years to really miss her, the relief at seeing the end of her life sort of eclipsed her passing. I really don't think people understand how bloody awful Dementia is, everyone thinks it's someone being a bit weird, or silly, they realy have no idea.
I wish you all the best @Nanatokidsdogshampsters and hope you find a way to make peace with this

CornishGem1975 · 04/02/2023 19:00

I feel for you. My mum is in her 60s and pretty much as you have described. Except she has vascular dementia and we were told prognosis from diagnosis was about 5 years and we're past that. I pray all the time that she just goes to sleep one day and doesn't wake up, it's a horrible life for her. I'll admit I don't visit very often, I just find it too much to cope with - and in all honesty, she doesn't even know she ever had children so it can be unsettling for her as I am a complete stranger and would be even if I went every day.

Roselilly36 · 04/02/2023 19:09

My heart breaks for you, it’s an horrendous disease. Flowers

nzeire · 04/02/2023 19:12

Another one here :( my poor poor once beautiful, vibrant woman is a shell of a human. It is a cruel, undignified, horrific end to a life. We’ve been here for years, gradual until becoming housebound for the last year.

we are all exhausted, in particular my 87 year old dad, who is up with her galloping around the house at all hours. She can barely walk through the day.

I’ve upped my self care, take weekends away when I can. Horrible guilt.

im so sorry for all of you and your loved ones. I wish their was a solution. I know I’m planning one for me if I get wind of what’s coming :(

Marylou62 · 04/02/2023 19:23

I can't actually bring myself to write what it's been like with my wonderful Mum... but put all your experiences together and add some more.. I'm sending love.. so much love to you all through my tears ..

Original poster
Nanatokidsdogshampsters · 04/02/2023 20:09

The biggest hugs to everyone going through this with a loved one.

OP posts:
Suzi888 · 04/02/2023 20:17

Dementia is unbelievably cruel, I’m sorry. My aunt had it, age 85 quite fit. She passed away after around 18 months in total. It was a shock.

She remembered us and wasn’t agitated thankfully. Loved her food, liked the home (thought it was a hotel or hospital).

There is help available, for those that are struggling with loved ones at home. If you contact adult social services, carers can be arranged which brings some relief. 💐 Sorry to all.

Kendodd · 04/02/2023 20:22

I feel for you OP.
A GP friend of mine thinks its immoral to flu and covid vaccinate people like your mum. She does vaccinate them but thinks its wrong to do so.

zighead · 04/02/2023 20:27

I agree @Kendodd Who gives consent for these vaccines to take place? I wonder if the adult children can say that they don't want their parents to receive them.

Kendodd · 04/02/2023 20:29

Another friend of mine moved in with her mum to look after her. It was awful and broke my friend, financially, emotionally and physically. One day the nurse visited and my friend poured out how she was a breaking point and exhausted. The nurse listened to all this and replied that my friend was doing a great job and her mum was well looked after and "that's the only thing that matters". My friend said she cried for hours after the nurse left.

whitesnowflake · 04/02/2023 21:00

Aw OP I'm so sorry you are going through this, I've been there too. Dementia is a horrid illness, it takes our parents from us long before death. My DM passed away at the end of last year. She had vascular dementia and Alzheimer's. No-one knows how long it will last, we thought DM was away a few years ago but she rallied, and returned home with care in place. She must have had a strong heart. By the end she was unrecognisable, and didn't know who we, her family were most of the time - it's just awful. My heart goes out to you OP.