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Frontal temporal dementia / pick's progressing

rosemouse

Registered User
Oct 12, 2015
7
My mum is 71 and has had pick's / frontal dementia for 5+ years. Her speech has been declining for a while but since lockdown really she doesn't talk any more. Before lockdown she was still able to go out by herself for walks (we live in a quiet suburb of london and it felt safe, she always did the same route, we used an apple watch to track her) so she could keep some independence for as long as possible. There were all these places she still loved to go to from her work days, and her carer who comes 5 days a week for a few hours to give my dad a break would take her there. But in lockdown we had to keep her in the house to stop her going out (she now tries to pick the lock with literally anything she can find, and walks past the door trying it every 15 mins or so). When lockdown lifted the carer tried to take her back to some of these places in the hope she's still be enthusiastic about them, but there was no recognition whatsoever. It feels like her world has shrunk rapidly.

She's still living at home with my dad, who is now a full time carer. I am the only family support for him living in the country (although he has some great friends) so I go over from the other side of London at least once a week to say hello and give him some normal adult conversation and am in touch a lot, and look after her when he needs a day off. Mum spends her days going from sitting at the kitchen table, to bed, for a dog walk with my dad, to back to the kitchen table. She no longer speaks at all. She no longer goes to the toilet by herself. When I looked after her for the day last week she had pooed in her tena pants, and I had to change her and shower her for the first time. Thank god she's oblivious to who I am and is placid (I understand not all pick's sufferers are) but it was just strange and upsetting doing that for your mother.

I feel like I'm watching my mother disintegrate and trying to make all the normal mid 30s life choices without her thoughts or support. I feel sad about my fit healthy dad spending his retirement this way. My friends are all getting married and having kids, they can completely relate to others when they have family illnesses like cancer or deaths, or something tangible, or when their 80 y/o granddad got dementia. But it doesn't feel like anyone really understands the ongoing grief of steadily losing your parent like this when they're relatively young. Last year mum forgot who I was and recognition no longer clicked back, and it really affected me although I tried to carry on like everything was ok, but also tell people what was happening if they asked. At the same time I had to organise hen dos for friends and be bridesmaid, go to babyshowers; friends couldn't understand why I found it hard to be enthusiastic about being at these celebrations when inside sometimes it just feels terrible.

Anyway sorry for the long post. It just all feels overwhelming at times and I needed to vent somewhere that people will understand.
 

lemonbalm

Registered User
May 21, 2018
853
Hello @rosemouse . I'm sorry you are going through all this. It is tremendously hard watching our parent change like this. One of my saddest memories of mum, who is now in a care home, was taking her to the loo and her saying "I don't know what to do".

I am glad you have found the forum, as I don't think people who have not actually experienced dementia in a loved one can really understand what it is like. You will find a great deal of support and advice for you here. It's important to remember happy times with your mum and hold on to those memories. I recently went through old photographs of my mum, which was sad, but at the same time I think did me good to see her how she used to be.