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Dementia and Alzheimer's

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I'm not coping.... are there any groups?

12 replies

Lyn29 · 18/08/2022 20:19

My dad got diagnosed with Alzheimer's in November, I feel lost, heartbroken, I miss him, I'm angry, sad, I'm angry my daughter has lost her grandad, I feel like my oh doesn't understand the pain, I miss his jokes, his sayings, his hobbies, everything I feel like I'm missing somebody I see every day. I want the sadness to go away and have the conversations that I used to have with him....

OP posts:
JustSortYoursefOut · 18/08/2022 20:26

So sorry to hear about your dad. I used to work as a Dementia Care Support Worker, for many years. Organisations such as Alzheimers Society or Dementia Uk (both have informative websites) are helpful. All the best x

Lyn29 · 18/08/2022 21:28

Thank you so much for replying. Is there any children that are going through this with their mums or dad? I feel
Like everyone I speak to doesn't know what it's like or doesn't care and someJust find it funny and think it's Just a normal stage of old life. Some people even ask me if his getting better. Today he was telling me that he wanted to visit me even though it was me

OP posts:
Lyn29 · 18/08/2022 22:03

Sorry when I mean children I mean is anyone going through this with there parents?

OP posts:
whiteroseredrose · 18/08/2022 22:18

So sorry OP, it's awful isn't it.

We think MIL is rapidly going downhill with dementia. Not diagnosed as the changes have been rapid. She will hopefully be going to a memory clinic soon.

I posted a few weeks ago because I've lost my wonderful, joyful partner in crime. DH is devastated. His DM has a vaguely bewildered, lost look and her joy has gone. She is permanently unhappy and we can't seem to help.

doodlyfiddly · 18/08/2022 22:31

I'm sorry to read about what you are going through.
I posted here a few years ago with my suspicions that MIL had dementia. Unfortunately it became more apparent and, by the time she was diagnosed, she was the only one surprised by it.
I remember the doctor saying that everyone with dementia is different and you never know the trajectory it's going to take.
It's such an awful illness for those around them and my husband and daughter have had to deal with the loss of their Mum & Grandma in everything but the physical sense. I wish I had words of comfort for you.
I suppose I like to think that MIL is the least affected now, in the sense that she really doesn't know what is going on. Is that a mercy? I'm not sure.

DahliaMacNamara · 18/08/2022 23:31

MIL has it too. It's not quite the same for me emotionally as a DIL, but it's all-consuming just the same. I don't always feel that she's gone, but certainly the softer edges have disappeared, leaving an awful blend of anger, aggression, bewilderment and general unhappiness. There's no joy or distraction to be found in anything. Even doing things she actively wants will set off anxieties about possible negative consequences within minutes, and too much stimulation, ie anything that's not staring at blank walls, risks triggering a meltdown because she can't cope with it. She's in hospital right now, so at least she's safe there, but I wish we could find something for her to lose herself in a little bit.

Beamur · 18/08/2022 23:35

I went through it for several years with my Mum and DH is now with his.
It's horrible. I understand your feelings and frustration. I can only say it's like a kind of grief. You start losing much of the things that made them 'them' and it's really hard.
Sorry you haven't found much real life support yet. There's lots of us unfortunately. Big hugs.

AcrossthePond55 · 19/08/2022 23:33

I went through it with my mum until she passed in 2021. It was 10 years from the first 'inkling' that dementia was setting in until she died. And for the last 3 years she knew nothing and nobody.

At first it was 'little things', easily ignored or laughed off. But by 2013 she progressed to the point where it was no longer safe for her to live at home, even with my DB there as her carer. She wandered away from the house no matter what we did to secure the doors, she called 911 on DB in the middle of the night telling the police he had a 'woman held captive', accused us both of 'drugging her' and stealing from her. It was horrible. But as is normal, at other times she was sweet and loving, and full of wonderful memories of our family. But ask her what she had for lunch and she'd have no idea. At that point we moved her to a memory care facility where she could be looked after properly in a secure and safe environment and her condition could be medically managed.

One of the best pieces of advice given to us was to, as much as possible, enter her 'world'. Never try to convince her that her delusions were, well, delusions. So if she called me by her sister's name, I answered. If she said 'this is a lovely hotel' about my home, I agreed. If she asked for her long-dead mother, I'd simply say she was 'at the shops'. Obviously, dangerous delusions needed to be 'discouraged' and downplayed and we would just 'hmmm' when she accused someone of 'whatever' and distract her with photos or TV.

Someone who has never been through this with a loved one simply cannot understand the pain. Or perhaps misguided humour is their way of deflecting the idea that it could happen to their loved ones, or to them. I was lucky in that my cousin was going through the same thing with her mother (our mums were sisters) so we leaned on each other. Plus my DH and DCs were wonderful and supportive. At this point I suggest you 'pick and choose' with whom you share information, and seek support groups if you cannot find sympathetic friends or family members. Eventually, and sadly, you will get 'used' to your dad's behaviours. Not 'used to' as in it won't bother you, but 'used to' as in an acceptance of each step on this journey.

Former President Reagan, when he was diagnosed, referred to Alzheimer's as 'the long goodbye' and it truly is. My darling Mum died in 2021. But we 'lost' her years before, when she no longer knew us or even really 'knew' herself. Her death (from Covid) was indeed a 'blessed release'.

IthinkIsawahairbrushbackthere · 20/08/2022 12:09

I'm just starting to come to terms with my mum's decline. The more I am educating myself the better I feel because I realise that her behaviour wasn't her being unreasonable, it was her condition.

I read and post a fair bit on the Elderly Parents board (find it under "Other Stuff") and the Cockroach Cafe is great for emotional support/humour.

This has been a hard week for me - normally mum and I would have been visiting our local agricultural show but she has been in hospital/rehab/nursing home for the past year. My FB memories were full of posts about going "to the Show/being at the Show/feeling exhausted after the Show". She doesn't recognise me, she tells people I don't visit, she is not interested in the family at all. And then out of the blue she will come out with something that has "stuck" and made sense - you can ask her the names of her grandchildren and she won't know. But if you ask how many guinea pigs my son has she will tell you straight away!

I have also joined several dementia groups on FB - they are both good and bad - good because they are very supportive, bad because I realise that there is a long way to go for my mum. She is in the middle to late stages of the illness - immobile, incontinent, struggles to speak but she has good days and bad days. She hates being in the home and is angry that I won't bring her home to live with me.

I found talking to an Admiral nurse was very helpful. I have also had counselling from Cruse, the bereavement charity although I think it might have been a pilot scheme and not available in the whole of the UK yet.

You are very definitely not alone.

urghnotthisagain · 07/09/2022 02:56

I'm going through this with my dad at the minute, I really feel you.
I keep thinking about this one lunch we had together and thinking that was the last time I had a conversation with him as he was.
It feels like I'm grieving him even though he's still here and I'm very much in the thick of it sorting out care etc

WhoWants2Know · 07/09/2022 03:02

If it helps, the Alzheimer's Society has an online forum called Dementia Talking Point where people with Dementia and their loved ones share experiences and support one another. https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community

MarshaMelrose · 07/09/2022 03:05

It's like losing them by degrees. But I discovered I was so busy mourning her that I was forgetting to just enjoy what I had with her. My mum just talks gobbledigook now but I try to understand and have a laugh about things. She's still in there somewhere, just a more tired, confused and frustrated version of herself.
It's a dreadful illness.

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