Where do I start...

[Scarlett123]

I work as a volunteer for CAB twice a week, filling in forms. If you've had a bad experience before, I know it can put you off going again, but please get every bit of help that's available.

Most places seem to be a post code lottery nowadays. We didn't get anything provided free, and my husband hated the idea of going to a Day Centre too. But I suggested that we'd give it a few weeks' trial and if he still disliked it, then he needn't go again.

And because he won at snooker, or a quiz, he then stopped protesting. My local Incontinence Advisory Service would only provide pads, not pants, but eventually they agreed, and provided them. It's an uphill struggle, I know, but if I hadn't have had the breaks whilst John was at his Day Centres, or Crossroads Care came round, I'd have had a breakdown.

 

[Rumpus]

Not Parkinsons

Perhaps you should consider that the problem may be Hydrocephalus and not Parkinson's. The symptoms sound like that is a possibility and Hydrocephalus is often misdiagnosed as Parkinson's.

Good luck

Please Ignore. Somehow this has got into the wrong forum

 

[Rumpus]

Thank you all for your kind comments. Unfortunately the crystallized debts are all in my name. And we cannot move house, we don't have enough equity, and the new tight rules mean that the lender would reduce our existing mortgage hugely, even if they would indeed lend. At least I have managed to postpone compulsory sell up date until I am 70. To be fair the mortgagor has been brilliant. It is possible (I have a Project in the works) that I may make myself some money during the next few years, and I quite definitely want to move house if I possibly can. Either before or after the inevitable. But who knows, I may get knocked down by a bus.... nothing in life is certain as they say.

The LPA is all ready to be sent off for registration. Wills are done (homemade, very simple and nobody or nothing to contest etc.) There are no accounts or money that I cannot access myself.

OH would hate daycare clubs etc.... I think possibly what I should look into is paid "sitting" care at some point. And yes I think the time has come to apply for attendance allowance, and the associated council tax relief. I believe the starting point for that is the GP?

Really, from the state of his health point of view, I am beginning to seriously think that a lot of the problems are being caused by Parkinsons. If he could walk and move around easier etc he would have a much better quality of life, for quite a while I think. It's the physical things that are going downhill rapidly, more than the dementia side (I think). The challenge is, is getting him assessed/diagnosed/treated within a respectable timescale.

Perhaps you should consider that the problem may be due to hydrocephalus and not Parkinson's

 

[Spamar]

Scarlet's post just reminded me. OH initially went to daycare cos I needed the time ( or at least, that's what I told him). He used to complain it was boring, but regularly came home with a packet of his favourite biscuits. I am convinced they waited to see who won the prize, then selected what the prize was from a secret stash!

 

[jikkie]

He went for a walk around the village with the dog yesterday... bit upset when he got back. He said he was afraid to go out... eventually I got out of him that it was because he "couldn't move". Definitely something going on here other than AD.

Beginning to understand too well why elderly people end up going to A&E. I am phoning next week to get an idea of the wait to see someone... but if it's months I really dont know what to do next. He is getting worse every week... day even.

 

[jikkie]

I have just received some helpful info from my local alzheimers org office...

I am reading all the new posts on this forum, but....... I confess, I feel totally inadequate to the task here. I know there is no way I can cope with getting up several times each night when I hear my husband up.... wash him in the mornings after the resultant accidents... put up with the isolation, the constant criticism, negativity and everything else. I know I sound like a nasty person,,, but I know I will not be able to be a "full time" carer, or perhaps i should say "full on". This forum is full of wonderful people, doing a fantastic job.... sharing their questions, their fears, their solutions..... but I am not cast in the right mould here. I sound a complete ***** I know, but my days are full with trying to make a little money, coping with two young dogs, a house, a garden... all the domestics, plus the extra ones created by my husband, sometimes deliberately as attention seeking, sometimes not.... I will not be able to cope with the physical inabilities on top.

The whole ethos of the forum seems to be about "manning up" to the challenge... what if you feel you cannot?

 

[Cat27]

We all struggle. We all have our limits.
You have to do what is best for your family. No two journeys are the same.

Please keep posting so we can support you xx

 

[Beate]

I think the only ethos here is helping other carers and share experiences. No two stories are the same but I'd like to think they are all given the same support. If you feel you cannot be his carer, that's fine too. After all, no person can be forced to look after another, duty of care lies solely with the state. So if you want to go down the care home route, I am sure you'll get plenty of advice for that here. My advice of contacting Social Services for an assessment still stands and is the basis for a care home admission, unless of course you are self-funding.

 

[Scarlett123]

Sweetie, we are all only human, and can only do what we can. I used to weep when I read how supportive everyone elses grown up daughters were, when mine wasn't, but, that's the hand of cards I was dealt.

This forum is not just a place to exchange information, it's where you can have a good old moan, rant, and get it all off your chest. I did this many times, and so have many others. I used to feel so inadequate, and wasn't able to see myself as Joan of Arc, Mother Theresa with a good sprinkling of Princess Diana thrown in.

At times I was so angry that I was much more like Cruella de Ville! Nobody judges anybody, and you'll get loads of support and a cyber cuddle.

Please carry on posting. xxx