New to the forum - my experience from the last 4 years as carer

Just Jill

Registered User
Mar 24, 2021
11
0
Hi every one. I have finally plucked up courage to post having lurked for a few months. This is my account as carer for my mother who has Alzheimer’s with Vascular Dementia.

Mum was diagnosed in 2016 having self identified that she was losing her memory at age 81. I guess we caught it fairly early and I am grateful she had the where-with-all to raise it herself. We lived about a 10 minute drive from her and I watched her closely for a few months and realised that the frequent locking her self out of the house and constant forgetfulness would only get worse. My husband and I therefore took the decision that she could live with us as I had always promised she would only go into a home if it was best for her health and safety. We ended up selling both houses and moving to her town just around the corner from her old house so that she was still close to friends and amenities that she knew well. Looking back I am pleased we did this early because she was engaged in the process and the transition for her was relatively easy. If I have learnt one thing in 4 years:- it only gets worse and putting things off makes it more dangerous and difficult in the medium and longer term!

Four years ago, she could walk into town or to a friends house; make a sandwich; pop to the shops and do a 60 piece jigsaw puzzle. Now, she cannot do any of these things. Furthermore:
- She cannot wash or dress herself without help;
- She is now very picky with food ( only wants sweet things) and isn’t aware when she needs to eat;
- She can never be left in the house unsupervised and wanders / gets lost so I have had door alarms fitted and she wears a location device.
- She no longer knows her way around the house or even her own room and bathroom;
- She gets muddled between TV and real life e.g. apparently both the queen and Alan Titchmarsh have invited her round for coffee;
- All conversations are muddled and full of fantasy with no base in reality;
- She constantly asks about going home and packs her clothes in a bundle ready to go;
- She sundowns every night, frequently changing clothes (after a fashion) for about an hour or two usually intent on going out with the girls;
- She gets all close family and friends muddled and thinks many of those who have passed are still alive.
- She has her own ensuite bathroom but will wee in waste paper buckets / her walker rather than use the loo at night. (All such receptacles now removed.)
- Her balance is now very poor so I have put a baby gate on the stairs to stop her from using them. I have also got her a Walker and a wheelchair as she fell in the street 2 years ago.
- she constantly hides things - mainly her won possessions, but sometimes those belonging to other people.

Other than dementia and physical deterioration, she has no other health problems. As a person, she is no longer the Mum I know but I am lucky she is generally cheery and happy and rarely shows anger or any spiteful behaviour.

What next on the horizon? Who knows, but here is what I am anticipating and doing my best to mitigate against:-
- She will soon get up at all hours - her body clock is already going haywire and she often puts herself to bed in the middle of the afternoon. I can see the change of clocks and onset of summer adding to her confusion.
- Her inhibitions are slipping.......( oh boy!);
- I think further falls are inevitable;
- She is at risk of a Urinary Tract Infections;
- She will become incontinent ( already had a couple of accidents).

Lockdown has been hard as she has definitely got worse in the past year and misses her friends and clubs. As things open up, hopefully she will be able to resume some of these, but her ability to participate is decreasing.

My life as a carer?
It is bloody hard. I can no longer work and it feels as though I am a prisoner tied to my mother. I am good at handling the practical stuff, but I can’t give emotionally and I struggle to entertain her when I really want to be a million miles away. I feel as though my life is on hold and all my ambitions for the future must be delayed. ( I am 59 and my husband and I had been planing world travel). I do have some one come in 3 hours a week to give me a break and I have also booked some holidays and organised for her to go in to respite care (for the first time) when I am away. I am now looking for a granny sitter I can rely on if my husband and I want an occasional evening out. I have also taken steps to better look after my own health e.g. gave up alcohol 10 months ago and now exercise 5 times a week. I feel fitter both physically and mentally and need to as coping with her dementia is not easy. I do rage more frequently than I would like and sometimes I am not very nice, but I have realised that helping myself and sometimes putting me first means that I am in a better position to handle the challenges this horrible disease presents for my Mum, me and my family.

Please feel free to comment or ask me any questions.

Jillx
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
Welcome to the forum @Just Jill.

Thank you so much for giving us the background to your sItuation. I’m glad you’ve found this forum and I know you will get lots of help and support here.
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Hi @Just Jill and welcome to DTP from me as well, reading your post I’m sure many of the posters on DTP can relate to your circumstances.
I hope now you have found the forum you will continue to post both for support and to share your experiences with dementia..