trying to pretend --

[hendy]

Hi Bel
I am sorry that you are in pain with your thumbs and hips. Bob sounds upset too. What a scary time for you and a worry about your shop and business. I have to agree completely with Grannie G and Connie. Perhaps now is the time to consider some kind of help, or for your business look for someone to run it for a while (even part-time). Better to take action now and have a choice than to let events take over. You've got to put your health first, Bel its in everybody's interests. No-one will think any worse of you for it. Is there anyone you can talk to one to one about these practical issues?
take care
hendy

 

[bel]

thanks again all

went today to see advise centre re could we get some benefits for me cos even though i run my own bussinessi only get one hundred pounds a week wages
it is a love job
it did not feel good until bob stopped working dementia we had never claimed any thing
they are going to help us she said you are disabled your self you are entitled so fingers crossed
out side help no bob wont have it his words he is not that bad
love bel x

 

[Grannie G]

Well if you get some benefits bel it will help. Don`t feel embarrassed, you have paid your dues and it is your right.

I understand about Bob, I have one just like that at home.

But perhaps you could get some help in the shop or the house, just to make life a bit easier for you.

Love xx

 

[lesmisralbles]

Good luck Bel

Our love goes with you
Barb & Ron X

 

[Splat88]

Wouldn't it be nice if the powers that be could have a sort of "claimants union" for those of us caring for dementia patients? A one stop shop to make sure you get all the help you need and are ENTITLED to.

 

[Carolynlott]

When my Dad was given his diagnosis, the consultant just came straight out and said "You've got Alzheimer's". Dad just looked a bit blank. "That's serious, you know" said the consultant. After that Dad used to keep cuttings from the newspaper and I found pieces of paper in his things on which he had written "Alzheimer".

When I suspected Mum might have it too I pretended to myself that she didn't and that it was just the stress of looking after Dad - that she would be fine if only I could get him looked after and she could have some peace. Once I knew for definite that she had it too I decided it would be better if she didn't know about it. I have been pretending (to her)for the last four months that all she has is a few memory problems - that everyone of her age (80) gets like that, and that she is allowed to be a bit silly and not know how things work, it happens to everyone. But she is declining so quickly.

The consultant is coming next Friday to give Mum her diagnosis - only I have pleaded with him not to use the "A" word because I don't think Mum can handle it. I have asked him to pretend. Mum knows she is ill. She keeps on saying it. She is so frustrated because she can't do the things she used to do. She used to knit such beautiful jumpers, and now she can't knit at all. She can't work the washing machine, she thinks the people on TV are looking at her. She hugs photos of me on my wedding day.

Yesterday a support worker from social services took Mum and her sister to the Dementia Care Partnership centre, which is only a short walk from her house. This arose because they had promised to take Dad and Mum there for a visit together ages ago, only Dad went into permanent care before it happened. They gave Mum a folder with loads of information about the centre and dementia care. Mum can hardly read. They kept telling her the visit was for her - now she is asking why - she never asked them, "what has it got to do with her", she asks. So I have brought the folder home and I hope she will forget about it. I am still pretending.
C

 

[Carolynlott]

PS
It's Dad's 80th birthday on Monday. What should I do? Take him presents and a cake and pretend he knows who I am or that he will know what a birthday is? I don't know. I'll feel I ought to do something but it's just a pretence - he won't know one way or the other. I saw him on Wednesday and he doesn't seem able to see or hear very well anymore. Celebrating a birthday seems a bit pointless - all I want to do is comfort him but apart from sitting and holding his hand (when it's all I can do not to weep) I don't know how.

 

[Skye]

Hi Carolyn

You might find that the home celebrates birthdays with a cake, etc. At least they do in hy husband's home. Cards are displayed in the lounge, and the staff make a point of mentioning the birthday and the lovely cards at frequent intervals.

John doesn't understand birthdays now, but I mark special days by taking him some small presents, and some some sweets for other residents and the staff.

You might find that a cake can't be shared with other residents, but you could take something special for your dad. I'd check with them before taking in a large cake.

I'm going to take a selection of small Easter eggs in on Sunday.

I know what you mean about only being able to hold his hand, that's all I can do with John now, he can't communicate. That's why I go in at mealtimes and feed him, I feel that I'm doing something for him, even though I know he's be fed if I wasn't there.