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Simon_16091 Online
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- Posts: 27
- Joined: Sat Sep 17, 2016 10:25 pm
Wed Oct 19, 2016 11:23 pm
Jenny thank you. Being isolated isn't easy and there are times when I do just get frustrated. I dislike the labelling and the assumptions people make as soon as you mention Alzheimer’s. People can live at home with this disease, but it depends on how it affects them (how functional they can be) and the staging. Mum is still doing remarkably well after 6 years, 5 years of which she refused to take her donepezil until dad died and I gave her an ultimatum -take the tablets and I can help or...well you can guess!
Some people are very lucky to have an entire family around them and others have no one at all.
I've been reading other responses not related to my own posts. I guess in some ways this is the moment I always dreaded....both for me personally, but watching the slow decline in mum and then having to re-think things. I think emotional pain is one of the worse types of pain, because there is no painkiller a person can take for it, you just have to bare it in the best way you can and as some people stupidly say "find a coping mechanism" -I can say first hand that I've heard that a 100 times and it is the most unhelpful comment. What people need is reassurance and a cushion to fall on when it all goes wrong. Our emotions are felt, when things matter the most to us.
I only know one thing, those with dementia each experience it differently and how that experience evolves impacts on the carers, whoever they may be.
For me right now its about ensuring activity and social connection and making sure there is an element of safety for mum. After months of begging mum to have a pendant for help (she lives in rural Cheshire) she finally agreed. After seeing her friend a neighbour (two doors down) had one, she now wears it all the time and occasionally demonstrates it to other neighbours by accidentally pressing the button (roles eyes).
It is hard....very hard, but I can't say that mum living in her own home at the moment is a bad thing, its a very positive thing for her and she loves being at home. This weekend we went to see an old friend of mine in South Wales, only a short stay, but the difference in mum was marked. We got back home and she was back to herself again. One day somewhere in the future this may change depending on what happens and how nature takes its course....the day may come when her home isn't home anymore