Sheenagh - some thoughts for you
Back from a visit home for the 'festive' season. It was terrible. Mum has been saying dad is unchanged - well I guess when you live with it 24/7 it might seem that way but he is in a state - and he is beginning to behave 'inappropriately'. Also, my uncle says that dad is taking other people's shoes at the bowling club and hiding them in his locker. Mum is deaf and now says she will need to get her ears syringed but has to put oil in her ears for a few days before the procedure - and as she hasn't time to do that, then she'll just leave it. But it drives everyone to distraction, especially dad. On Christmas eve they went to bed and I could hear them shouting at each other - an awful, vitriolic argument - that went on until 4 a.m. On Christmas morning Mum sat and opened all her cards and presents (it's her birthday as well) but hadn't wrapped a single present for anyone, let alone her grandchild. After a while, I asked Mum if my son could open what his father and I had given him as he'd been sitting patiently for ages, knowing full well that something he'd asked Santa for was under that tree. Mum agreed and then disappeared bringing her presents for us in their original carrier bags - in spite of the fact that there were rolls of wrapping paper everywhere.
Mum is adamant that she is going to cope on her own - but at this rate they're going to kill each other, or dad will be thrown out of the bowling club - or arrested for exposure, or inappropriate 'touching'.
I am in despair.
Hi, Sheenagh,
Sometimes it is time to act for everyone's good. Five years ago my mother who has Alzheimer's and was at the time living in sheltered accommodation with increasing amounts of carer support came to stay with us for Christmas.
We lived many miles away and my brother and sister both live abroad so I had been supporting Mum from a distance visiting once or twice a month and continually being in touch with her. Mum was lucky in so much as she had supportive friends and her brother and sister in law lived close by.
We knew that Mum wasn't coping as well as she might have and was very frustrated and distressed at times but you never really know at a long distance what has / is changing day by day. Only when she came to stay was the reality bare for all to see.
Actually Christmas itself had gone ok - Mum had stayed many times before and was on familiar ground - it all came apart when it was time for her to go home. She couldn't remember anything about her home - not even the town where she had lived for thirty five years - fear set in, distress and tears followed as she knew she had been 'found out' - her memory and her cognitive skills had deteriorated to such an extent but she couldn't admit it to herself let alone us.
We were very lucky we had a supportive team around us - an excellent community psychiatric nursing team, health visitors, a very friendly and helpful consultant and social services. Our main carers were privately funded, the carers we used were very professional and kept daily records and provided regular feedback.
For the next few months we agonised about what to do; the feedback I was getting from my Mum's carers was that Mum was frightened to be alone - distressed everytime she was left - not knowing what to do.
Every visit after that Christmas it was clear things were not improving - they were deteriorating so with support from Mum's brother I took the decision that residential care would be the only realistic option. I talked about it many times with Mum and she said she agreed, but in reality she didn't really understand what it would mean.
We had a formal assessment completed by social services, supported by the CPN team which independently confirmed the recommendation. Then we came to the most difficult decision of all - where? Do we opt for a care home in her home town where she had lived for 35+years, has her friends, her brother, her church or bring her to a care home near to us where we can visit and support her.
After much heart searching we made the decison to bring her to a specialist care home near where we live. It felt like we were being selfish, taking Mum away from her friends to make it easier for us, but looking back it has been the right decision.
Mum has been in the care home for four and a half years and has been fairly stable for the last 3 years although continues to deteriorate in the range of skills and activities she can do. Yes it has been easier for us, her brother has since died and her friends would not be able to provide much day to day support in her current condition. The bottom line however is we know she is being well looked after because we can interact directly with the home and my wife and I can each visit her regularly every week.
For you my guess is that the worst is not knowing what is really going on - you have seen a snapshot at Christmas but that is all you have. From waht you say I would be concerned for both you parents, many of the things you describe - like the Christmas presents are exactly what I saw with my mother a few years back - little things that aren't quite right. With your Mum already coping with caring for your Dad it is easy to not to notice that she may actually also need help (and not just with deafness) but doesn't realise it.
My advise would be to seek out professional help both medically and from social services whatever resistance you may receive from your parents initially. Get a proper needs assessment for them both and take it from there. You may need to take hard decisions for them and don't forget yourself - you have to live your life too - so sometimes you may need to be selfish for everyones benefit.