Alzheimer's In Public

[kittykitty]

This is my first post - so here goes!

My mother, in her late 60s has Alzeheimers and has had for about 10 years. She lives in ireland with my father who cares for her at home - he is in his early 70s. Mum's on Aricept, so her decline has been slowed down, but she's now in the position of being very difficult to go out with in public.

They are both visiting us in London this week. We were in a shopping centre with her and we needed to take her to the toilet. But once in there, she refused to go in to the loo, or come out with me, meaning I had to get my father to come into the ladies loo and get her out. This is making it increasingly difficult to go out with her - does anyone have any suggestions. She becomes quite agressive when she doesn't want to do something.
I'm worried that my father will end up becoming reclusive because he's so worried about what people will say or think.

 

[Norman]

Hi KittyKitty
welcome to Talking point.
You don;t say what part of the country you live in so I could not give the local council number for you.
An answer to the toilet problem is to obtain a RADA key.
TheY fit all disabled toilets throughout the UK,and make it easier and not embarrasing when a man and a woman enter together.
They are available from the local council offices,some charge £3.50,some are free.
You are asked to sign a declaration regarding the disability involved.
Hope this helps,let us know how you get on
Norman

 

[Michael E]

Kitty hi,

My wife is 65 and when we travel the loo is always a challenge! I sort of hover outside getting very strange looks from the ladies as I peer inside - Cannot offer a solution except actually I try not care what they think - what anyone thinks.

You can only laugh and explain the situation and if the strangers don't like it then there is nothing I can do about it... mind you I have not had to actually go into the ladies in the UK to get her out but in France a couple of times I have made sorties into the area.... The French are less worried about that sort of thing but I do get some odd looks that normally translate into understanding looks.

I think there is a danger of people of our age becoming recluse - the illness has a way of cutting off normal social behaviour and because you have to spend so much time 'being there' finding time to do other things is challenging... Not sure there are easy answers but I find it helps to know 'we are not alone but going bravely where others have been before'. I think I cope by being up front - explaining what the problem is - People with cancer are 'up front' Alzheimer's is even more destructive and I think those of us involved should not hide what the problems are but try to increase public awareness... By the way welcome to the forum I find it really helpful.
Michael

 

[kittykitty]

Thanks

Thanks for your replies - both very helpful! I'll definitely follow the key one up.

I'm just so worried about my Dad - he's finding it harder and harder to cope, yet he's determined not to seek other help, bar a girl who comes in a few hours a week during the day - for Mum. She's very bad now - eating is difficult, as in knowing what to do with a knife and fork - and I think she's partly incontinent at night.

Would like to bring up the idea of residential respite for him, but don't know how he'll respond...

 

[Lynne]

Response

Hi Kitty,
Welcome to the funny farm, I'm sure you'll find a lot of help & advice here, not forgetting a safe place to jump up & down, and have a RANT to express the pain & frustration this awful disease brings.

A few weeks ago, someone shared a useful tip which you may find useful (sorry to the originator , tried to find it to "quote" it with a By-line, but couldn't locate it when I wanted to)

This family had a typed-up general purpose card which whoever was accompanying their Mum/Dad would have with them, basically saying

"Please be patient with my Mother (Dad/Wife/Husband)
He is suffering from Dementia/Alzheimer's Disease, and
may not reply when spoken to
may speak loudly/abruptly
may/may not .... .... (insert likely symptom or action)
She doesn't mean to be rude, and we appreciate your understanding."

This can be handed to the shop assistant/Taxi driver, or whoever, to pre-empt any misunderstanding.

Obviously the content will vary with each individual AD-sufferer, and their needs.

Best Wishes