I've been reading this site for a couple of days and its only now that I realise that we have been incredibly fortunate in our experiences- even tho' at the time it hasn't felt so. I think I've a few bits that others may find helpful and would like some "words of wisdom" for another dvevelopment.
One thing that has really helped was that both parents signed Power of Attorney forms many years ago when they were really fit and about to travel abroad for a while - hubby and self are going to do this soon as well even tho' we're still in our fifties - saves so much hassle and anguish for the kids !.
Mum is 85 now and was diagnosed with Alzheimers around 4 years ago - went straight onto Reminyl - thanks mainly to the efforts of my incredibly pushy sister !
So lesson one for us was that if you don't absolutely insist you can be sidelined.
(and how NICE can say it doesn't help I just don't know)
Her dementia has worsened over the last three years or so but very slowly. She has just about managed to remain at home during this time with a lot of support - a daily carer and two days a week at a day centre - which has been wonderful in keeping her socialised and a bit active - can't recommend these places highly enough. Even tho' she moaned non-stop about having to go out , the reports from the Day Centre Manager were that once there she joined in, ate well and appeared to enjoy herself !
Over the last few months however things started to deteriorate - ending up with her spending most of her time sleeping in an armchair, being very difficult to get dressed at all, smoking like a chimney and totally incontinent - which she didn't seem to notice. Even tho' the carer left her lunch she wouldn't eat it and was nigh on impossible to move. (we also visited daily ) Eventually she was admitted to hospital suffering from some malnutrition, severe dehydration AND a severe urinary infection - ( which apparently can have a terribly effect on dementia ) we knew that things couldn't continue as they had !
We have been incredibly fortunate in getting her a place in an Assisted Living Scheme - ( not allowed to advertise I know but this is run by a very respected national organsiation) again mainly due to huge efforts on the part of my sister - the CPN, Day Centre Manager and her social worker all supported this move and the hospital were adamant she couldn't return home. She's been there three weeks now and touch wood its like seeing a totally different woman -for a life long depressive she's quite cheery, clean, well dressed and well fed. (it helps , that with very little memory of course that she can't remember too much about her old home ) She has her own flat, with carers in four- five times a day, is taken down to the cafe for lunch and has a carer who stays with her at teatime to see she eats ( she seems to only ever eat in company) The routine is really helping. She has also forgotten that she smokes - which is a huge blessing.
Despite all this we have a fairly new problem arising - she wants to sleep all the time regardless of where she is- even fell asleep at the doctors surgery last week. Have done a bit of internet research and its obviously another progression of the dementia but others have suggested it could just be her learned coping reaction to living alone and being quite ill or even just stress. (poor eyesight means that she can't really read or watch TV) MY QUESTION IS - has anyone out there got any experience of using light therapy to help with this ? ( a SAD machine)
Sorry to everyone who has ploughed through this huge epistle - I'm not usually this long winded - but just realising that we're not coping alone has been an eye opener and I'm starting to count my blessings - our experiences, although really awful sometimes and tremendously guilt inducing haven't been nearly as bad as others.
All the best to all carers .