I hate dementia

weepweeps said:
Thank you all for the support. My dad is getting very tired. My sisters and I have offered thousands of times to get their shopping or sit with mum while he does something else. But so far he hasn’t wanted any help. Mum sleeps a lot now. But it means that he can’t plan shopping or doctor appointments as she may not get up that day. She was talking about her husband to him he other night. So sad for him that she didn’t recognise him 😢. Shes started having long conversations with nobody. Not washing or changing clothes often. But all in all she is actually quite happy now.
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You may want to consider some respite care in a place that specialises in dementia care.
Respite is for the benefit of the carers, it gives a few days break from the constant worry.
 
Merab's Slave said:
You may want to consider some respite care in a place that specialises in dementia care.
Respite is for the benefit of the carers, it gives a few days break from the constant worry.
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Great idea. I have mentioned it to my dad. He’s not keen. But I’ll try again.
 
Bradshaw Piggies said:
@weepweeps I think it's really important that you have a good support network around you. This forum is fantastic for that 🥰

This may sound odd, but I actually worry more for my mum (who is caring for my grand mother, aka gg). My grand mother has both dementia and Alzheimer's. But my two aunts voted and she ended up living with my mum. My mum still has a full time career, kids and grandkids to take care of and caring for my grand mother is actually putting a lot of stress on her. I'm really worried about my mum's health too. it really is tough on those around the people with the diagnosis. I do feel that we will get to a point where we need additional care for my grandmother than only a correct facility can provide - however, moving her there will mean battling with my mum's guilty conscience first (she said she would feel terrible moving gg into a home as she knows she would have never wanted that). But the disease is progressing (gg doesn't always recognise me anymore).
Myself and my brother are doing all we can to help (also around careers, animals, businesses, children etc), to try and support my mum.

We have noticed recently that gg's speech has deteriorated; it's really hard to understand her now. So we came up with the idea of pictures on card (food, water, toilet) etc so she can also point to what she wants. She also gets very anxious (especially around sunset - which is obviously much earlier in the evening now as we go into winter).

It's been really helpful to bounce ideas off of other people (for example, finding a solution to the speech problems). So please don't ever feel isolated in what you are all going through. You are more than welcome to also contact me at any time if there's anything you want to offload.


Here is a pic from March last year, when Koda and I did the sponsored walking to raise money for Dementia UK
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I do worry about my sister - and so does my mum. She continued already looked after her mother-in-law with dementia when the rest of the family had given up and dumped most of it on her and now she has my mum to check on daily on top of a demanding job with loads of overtime and Long Covid...

Anyway, I have done my best with my MIL (hub is an only child and she was already 80 when we married), even if it was mainly to support him and keep things running smoothly in the back once she stopped accepting me in the last year and only wanted him all the time. And then of course support him through his loss.

But I often think that dementia is harder on the carers from a certain stage onward.
Have you considered joining a local dementia carers' group for support, @weepweeps ?
 
Merab's Slave said:
In my experience a spouse rarely is keen.
It feels as if it’s breaking the marriage vows
Soft and gentle does it.
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Yes. My sisters and I think he made a pact with her not to put her into care. They have always been a team and sorted their problems out themselves.
 
weepweeps said:
Yes. My sisters and I think he made a pact with her not to put her into care. They have always been a team and sorted their problems out themselves.
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That’s what the strength of their marriage is, but also a hard thing to deal with.
It’s about trying to find a way that helps see respite as something positive, not negatI’ve.
You know your dad best so you and your sisters may be able to talk to him in such a way that he thinks respite is caring, not letting your mum down.
Holding you in my heart ♥️
 
weepweeps said:
Yes. My sisters and I think he made a pact with her not to put her into care. They have always been a team and sorted their problems out themselves.
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You could be describing my MIL when her husband got ill.
She kept being promised an Admiral nurse but they never arrived regularly and she really struggled.
One of the nurses just happened to pop in one day when FIL was stuck in the bathroom (locked himself in and couldn't get out) and they helped MIL to sort it out.
They then took one look at the bruises on MIL and said they would arrange for a few days of respite.
She was very anti the whole idea, but thankfully the nurse in question was quite adamant she needed a few days off.
Once she did that she really saw that she did need a break occasionally and felt better doing it the next time.
It was a total game changer, but had to be down slowly, so stick with it.
Maybe suggest just doing it once so you can do something special together (a spa day, a nice meal out, etc). If it's only 'once' she might not feel so bad, and then might see it's not a bad thing occasionally.
 
Swissgreys said:
You could be describing my MIL when her husband got ill.
She kept being promised an Admiral nurse but they never arrived regularly and she really struggled.
One of the nurses just happened to pop in one day when FIL was stuck in the bathroom (locked himself in and couldn't get out) and they helped MIL to sort it out.
They then took one look at the bruises on MIL and said they would arrange for a few days of respite.
She was very anti the whole idea, but thankfully the nurse in question was quite adamant she needed a few days off.
Once she did that she really saw that she did need a break occasionally and felt better doing it the next time.
It was a total game changer, but had to be down slowly, so stick with it.
Maybe suggest just doing it once so you can do something special together (a spa day, a nice meal out, etc). If it's only 'once' she might not feel so bad, and then might see it's not a bad thing occasionally.
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That’s a good idea.

What about looking around for day care so it’s just a day out.
Memory cafés are also good.
 
Thank you both. I’ll keep trying to get him to agree to mum going in just for a few days. The first time will obviously be the hardest.
 
Wow I must have missed this thread. Its crazy just how many people have been affected by this happening to family members. Its fascinating to hear everyones stories. My grandma is showing clear signs of dementia now but she watched both her parents deteriorate and in her words "loose their minds" she gets so angry at herself when she gets confused or forgets something and is really struggling but she's not ready to go to a doctor about it because she's not ready to accept it. She's spent her whole life doing crosswords sudoku and jigsaw puzzles to keep her mind working and has fiercely fought any deterioration but it's getting to a point she won't be safe to live alone much longer.
 
Sweet Potato said:
Wow I must have missed this thread. Its crazy just how many people have been affected by this happening to family members. Its fascinating to hear everyones stories. My grandma is showing clear signs of dementia now but she watched both her parents deteriorate and in her words "loose their minds" she gets so angry at herself when she gets confused or forgets something and is really struggling but she's not ready to go to a doctor about it because she's not ready to accept it. She's spent her whole life doing crosswords sudoku and jigsaw puzzles to keep her mind working and has fiercely fought any deterioration but it's getting to a point she won't be safe to live alone much longer.
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I’m so sorry to hear that. There may be some medication she could take if she went to her doctors. But I understand how difficult it is to try and convince them to go. Good luck.
 
weepweeps said:
I’m so sorry to hear that. There may be some medication she could take if she went to her doctors. But I understand how difficult it is to try and convince them to go. Good luck.
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I know but I think she sees going to the doctors as the beginning of the end. At the moment she's able to live in denial and I'm not sure that's a bad thing if it keeps her happy. We've lost a few family members recently 1 to suicide and 1 to old age/ cancer already this year. I feel like when someone dies a part of her dies with them like we're all propping up some part of her with our routines, memories and connections with her and when someone dies she suddenly finds daily life a lot more difficult.
 
I used to work in a care home,not as a carer but as a housekeeper.I still had a lot of interaction with the residents and it broke my heart seeing them get even worse to what they were when they 1st came there.My heart goes out to anyone who has a family member suffering from the disease.It really is such a cruel illness.
 
Gem789 said:
I used to work in a care home,not as a carer but as a housekeeper.I still had a lot of interaction with the residents and it broke my heart seeing them get even worse to what they were when they 1st came there.My heart goes out to anyone who has a family member suffering from the disease.It really is such a cruel illness.
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Thank you so much 😘
 
I’ve just signed up to a 25 year long dementia research program. I’m so happy that I can be part of this project. Hopefully with more research there will be more treatments and a cure in the not too distant future. Even if it’s not around for me, hopefully my children will benefit from this
 
weepweeps said:
I’ve just signed up to a 25 year long dementia research program. I’m so happy that I can be part of this project. Hopefully with more research there will be more treatments and a cure in the not too distant future. Even if it’s not around for me, hopefully my children will benefit from this
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Good for you.
The more research the better for those who will suffer dementia in the future.
Hopefully some of the outcomes will also benefit todays sufferers too
 
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