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Discussion in 'I have a partner with dementia' started by Mibs, Feb 21, 2015.
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Nothing else happened, either
It's more than 4 years since my husband's diagnosis. He has been ill for some years before that. Mental confusion was listed as a possible side-effect of medications prescribed for other ailments, so the Alzheimer's wasn't immediately apparent. As long as our daughter was alive, I could manage. She would take the patient to her home or to a restaurant, and | could get on with something, uninterrupted, knowing that he was safe, and would not be bumping into, or tripping over, things I needed to move. It's no use warning him. He forgets. A painter is supposed to come and paint the outside of the house. All openable windows need to be opened. I can't get anywhere near some of them. I need the saboteur out of the house, so that I can move the clutter (90% his; !0% 'bags I' space). A nurse visited recently, and saw my predicament. I have posted a letter to the GP saying that it must be somebody's job to help me, and I want that person identified and alerted. Antisocial workers? No thanks! I need someone who understands the problem and can solve it. The house is in my husband's name. He is barmy. He is not daft. I am not to use the vacuum cleaner, because we won't hear the phone. I am not to make outgoing calls because they will block all his marvelous incoming calls. If anyone rings, I am to cut the conversation short. I am not to let anyone into the house. It is too dirty and untidy to be seen. I am not to touch his stuff. The house is to be made clean and tidy by magic. I am not to go out unless he asks me to. I am not to go anywhere unless he has asked me to. I am to come straight back. I am not to talk to anyone. I talk to people behind his back, and I am not to do that. Where is the kind, considerate loving bridegroom of 50-odd years ago? Long gone! Where is the help I need? Good question! Answers, I suspect, on the back of a postage stamp.
This is my first time on here. Having read your comments I can identify with a lot. My husband was diagnosed with AD a year ago, looking back I realise it's been longer but we were putting memory problems down to the MS he also has. We have had "support" but it was all in a flurry after the Memory Clinic appointment and now it's gone. Lots of well meaning information but no one tells you how to react when H is hammering huge nails into the wall to hang pictures up then days later takes them down, fills in the holes and paints the area . . . then does exactly the same thing over and over again. Continuously "tidying" but actually making a huge problem because he can't find what he's tidied up then throws away clothing " to make space". I get frustrated (and know he is too) but it makes me angry then I feel guilty because I'm expecting him to be the person he was and he never will be again. So sad.
I too agree with the diagnose and desert slogan. I also think all this stuff we are hearing from the government about getting more sufferers diagnosed has very little to do with helping sufferers but a great deal to do with stopping diagnosed sufferers spending any money they may need for future care as this can then be counted as deprivation of assets.
With regard to help. Memory clinic= useless, GP= useless, Local Consultant = some help but difficult to access after first few appointments. BUT local carers group= (find under carers UK) very helpful, especially tips from other carers who have been there and got the t-shirtand their Caring with Confidence Couses and Dementia Forums , Local AS carers group = good place to vent with others who understand and again can offer tips and Crisp carers course, and Tp is also a great resource.
I'm amazed that so many have told of diagnosis. We didn't even get that! Ah well, he's lived through two strokes, is still alive and so am I!
Love and courage to you all.
did i hear somebody mention a good nights sleep?,i'll have one please,i'd try sleeping tablets but i suffer from sleep apnea,so don't think it's a good idea,i agree with the comment about proper classification of the disease,that would possibly sort out some of the problems,where i'm sat alzheimer's/dementia are terminal,so why the hell aren't there the special rules in place for dwp,hospital parking(grimsby cancer patients get free parking)and the government in general.
Lexy; I'm with you all the way on what you've said. The only thing is that, those whom we go or went to for 'help', are going to be those walking in our shoes, one day.
I let rip, once, to someone about the care issue, and that's the last ime I want to deal with it.
A strong mind? That's the most difficult part of the whole process, and I haven't always had the strength not to let it all go, sometimes. It is taxing, but I have someone's life in my hands, and, like I had to tell one professional, he's NOT a criminal - he's a sick man. Did nothing, of course, so it's safer to just stay away for as long as I can. I would never begrudge anyone else help, if they can find it. If they can, then thank God for that.
Well, I suppose they'd know more of the ropes than I do, for instance, because they worked in the health service themselves. But sadly, the only way these people are ever going to know what it's like is to live through it.
I couldn't wish that on anybody. If they feel safer running away from it all, then so be it. Who then has the most courage? I think I know, lexy, but who am I to bleat!