A life in the day of.........................

[Cliff]

Dear Sylvia,

Hopefully. just writing about it helps to relieve your feelings. But it is the repeated thoughts and statements again and again that test your strength. Yours is a heavy burden to carry on top of every thing else. Do hope you find the will to go on.

Love to you both.



May I thank everyone who responded to my post last night. When I read the thread and age came up I couldn't help posting my difficulty. Lots of good things in the responses - really makes it easier to press on - am grateful. C.

 

[DeborahBlythe]

Sylvia, I'm so sorry that your nights and days are plagued by the constant questioning. My mum went through a stage of great repetitiveness but it was never as hurtful as Dhiren's is. Let's hope he too moves on from this subject, and that you can regain some peace of mind. Thinking of you. Love Deborah xx

 

[Grannie G]

What progress!!!

Today was the final day of the 8 week Memory Clinic.

Following an upsetting night, Dhiren was refusing to go. I told him it wasn`t important whether or not he went, I would go by myself, and he would be alone until 1 p.m.

At 9 a.m. he decided he would go with me. He actually said he`d be cutting off his nose to spite his face if he didn`t go.

He asked me to put his bank books in a safe place, and apologized for accusing me of using his money, but only after I`d reminded him of what he`d said and how he`d behaved. He knew something had happened but didn`t know what.


So to the Memory Clinic.
He was greeted by the Senior OT who he`d been referring to as `that woman` for the past 7 weeks. He gave her a beaming smile and, as she left his side to greet someone else, said to me, `She`s a wonderful woman.`

When the clinic was over he came out in remarkable spirits. He made a point of going over to someone and saying goodbye to her, telling me she was in his group, and then sang the praises of everyone, all the way home.

I told him I was sorry the course had come to an end, and he agreed with me. So I told him I would try to find something else to take it`s place.

He thought that was a good idea.


Thank you Deborah and Cliff for your kindness and understanding. But while you were commiserating, the tables had turned once again. Who can keep up with it?

With love xx

 

[Grannie G]

Short lived progress

This afternoon he went for a walk.

He returned exhausted, [ he had been up since 4 a.m. ], and hungry, and said he didn`t feel well.

So I made him a snack and he asked me to help him get to Manchester. He insisted he has family there, family who will help him see a doctor, a herbalist, a homeopath. Family who have businesses, who can give him money as he has none.

And I said I will do anything to help him but I am not prepared to spend the rest of my life talking about money and Manchester. I will care for him in any way possible because he is ill, but I will not go to Manchester with him again after what happened the last time. I will not help him to go by himself, because I won`t have it on my conscience that I helped him travel alone.

And then I found a credit slip on the kitchen table. It was from the bank where all his accounts have been closed. It showed a credit of £30. It was dated 15-10- 07
and timed at 15.05. It seems he has been to the bank to ask for his balance and they have given him that credit slip to get rid of him. So tomorrow I shall have to go to the bank and thank them.

 

[jeanierec]

Unconditional caring

Hi Sylvia

I`ve not been on here for a while but checked in last night to see how everyone is doing and oh what a difficult time you`ve been having. I couldn`t post last night `cos what I read made me cry and thats no help to you.

I honestly can`t express the admiration and respect I have for you , the pain you are experiencing and the love for Dhiran that still shines through in spite of everything leaves me " gobsmacked " , a yorkshire expression methinks !

And yet as ever you are there for everyone else unconditionally . We do what we can to make our lives and the lives of the people we love as good as can be but thank God for those people who in spite of everything go the extra mile and thats not only you but lots of others on TP.

God bless

Love Jeanie x

 

[Grannie G]

Thank you Jeanie.


He woke this morning seeming to have forgotten the discord of yesterday afternoon/evening. We chatted amiably, had breakfast, he went for the paper.
He was making a cup of tea and was smiling. I asked what he was smiling about.
D `I`m smiling because I`ve just realized how stupid I am.`
S `What about?`
D `You are not forcing me to stay here. I can go anywhere. You are not stopping me.`
S `That`s true, you are a free agent.`
D `But I haven`t got enough money to go.`
S `I will get your bank book. It will show you you have enough.`
D `I don`t get my pension.`
S `When you move, send me your new address and I will make sure your pension is forwarded to you.`
D `New address? I never thought of that.`
S `You will have to sleep somewhere.`
D `I`ll be staying with my family.`
S `What is their address?`
D `I don`t know.`
S `When you find out, phone me, and I will send you your money.`

He went off and returned with a scrap of paper.
D `Will you write down your address and phone number for me.`


I hope people don`t get sick and tired of reading this. I need to record how much this `going home` seems to have intensified. I feel it`s more than sundowning as it seems to be occupying the best part of each and every day.

There is no solution, no strategy for management, no way out. My husband has Alzheimers.

 

[germain]

Hello Grannie G

When our Mum first moved out of her old home we wrote her a note explaining what was happening - in very very simple terms and large print - then when she asked for the 100th time we encouraged her to read her note and it seemed to reassure her. Over the last few months we've written quite a few notes and keep them all together to pull out as necessary- could you not make a simple A4 binder file for Dhiren with large print explanations that he could refer to ? ( we laminated some of our as as they were getting read so often)

Not sure why but our Mum would always take more notice of something she read than anything we could say to her.

Obviously this may not work with Dhiren but it could be worth a try - you could call it something official sounding so that Dhiren doesn't feel patronised etc.

regards
Germain

 

[Brucie]

There is no solution, no strategy for management, no way out. My husband has Alzheimers.

you have a way with words!

That very telling statement could have been nailed above our door as well.

 

[Grannie G]

Thank you Germain, we have a book, but he doesn`t want to read it. It does not make pleaseant reading for him. He has put it in a draw under some clothes.
I`m pleased it works for your mother.

But the bank book `appeared` on my bedside cupboard. I asked him if he wants it and he asked me to put it in a safe place.

 

[jenniferpa]

There does appear to be two schools of thought about this. Like Germain, my mother found it comforting to have a notice that said "You are 89 and have had a stroke" which was attached to her walking trolley. That was more to do with the fact that she was convinced she was in her 60's and couldn't understand why she felt as she did. It actually dealt with a lot of other issues indirectly as well - when would she be going back to work (never, she was 89), why was she somewhere with all these old people whn she was so much younger (she wasn't she was 89) etc. Other's, like Dhiren, are well aware of their age and that there is something frighteningly wrong, and having it pointed out continually (whether actively or passively) either does no good or actually causes more distress.

As you say, Sylvia: he has Alzheimer's Disease and no matter how much we might want to find a solution to your problems and thus offer suggestions, in our hearts we know really that there is no solution. That's what's so valuable about this thread, and why it should have a wider audience: it highlights the sheer unremitting grind of AD.

Love

 

[Mameeskye]

Hi Sylvia

Your courage reaches out to me from all your posts and this thread in particular would make good reading for anyone trying to "understand" AD.

What strikes me though is how often money is the thing our nearest and dearest get wound up about. It led to a lot of my Mother's anxieties in her early days too.

It seems strange but I am almost thankful now that she has reached the stage where she has forgotten all that as it is easier to visit now, rather than constantly having to work out the "right" thing to say. Strange how the increase in confusion has a silver lining.

(((((hugs))))) To you and may your posts give strength to others.

Love

Mameeskye

PS Your name is my Mum's name..I've not met many Sylvia's in my life!

 

[Margarita]

I need to record how much this `going home` seems to have intensified. I feel it`s more than sundowning as it seems to be occupying the best part of each and every day.

Your right when you say that , because I never record it when my mother use to do it to me , always wanting to leave planing her flight but I am sure it went on for good 3 years .

There is no solution, no strategy for management, no way out. My husband has Alzheimers.

There is no solution, no strategy for management

your right about that , for me I just ended up going with the flow of it, as it also happen anytime of the day.

no way out

Must add they is a way out , as in the future it stop a different stage appears
am taking about my experience with my mother. when living in that stage , it just seem endless .....

PS

and timed at 15.05. It seems he has been to the bank to ask for his balance and they have given him that credit slip to get rid of him. So tomorrow I shall have to go to the bank and thank them

please to read , that bank helping you xx

 

[Cliff]

hope people don`t get sick and tired of reading this. I need to record how much this.......

Dear Sylvia,

Please don't give up as, I'm sure I speak for many, we do not get tired of reading your narrative day by day.

Some of it relates to our own experiences and some triggers off feelings we can share.

Your story accounts for the burden you carry as a loving carer and we all share that in some part.

Please go on.

With love,

 

[BeckyJan]

Sylvia:

In no way do I get sick and tired of reading - it is so near the mark with me that it is some sort of vague comfort.

I do not have the relentless money and 'going home' scenarios but I do have things that run along with that. Such as, are we home now - thanks for taking me away (when we been further than own doorstep!), are you my Mum etc. etc.

This is an incredible thread. It truly illustrates how we live with 'dementia'. I just feel more folk should add 'how their day has been' - that would take the pressure from you and also illustrate how it is for so many of us. (Hope that makes sense).

Best wishes to all Jan

 

[Margarita]

hope no one thought I was implying anything , because I never quoted

sick and tired of reading.

I never quoted it , because it never entered my mind that anyone would think that , and sylvia just said that because she was feeling low .

 

[Grannie G]

This morning.............
D`What are today`s plans?`
S `We have Prime Minister`s Question Time, at 12 o`clock, England against Russia at 4, and a lovely dinner tonight, so it`s going to be a good day.`
D `Every day is a good day.`

 

[Grannie G]

In praise of banks...........

I went to the bank today to thank them for giving Dhiren a balance slip, showing a credit of £30, even though he has no account there any more.

It seems he goes in a few times each week, asking for the balance of his account.

He is unable to accept he no longer has an accout at this bank and once asked to open a new account. The cashiers told him he needed identification and he became quite stroppy, telling them he`d had an account with this bank for over 50 years. To appease him they now give him a balance slip.

There has been a bit of a problem lately. There have been several staff changes and not all staff know Dhiren.

It won`t take them long.

There is a lot of criticism of banks, both in the media and from personal experiences. The local branch of this bank gets my vote any day.

 

[BeckyJan]

Every day is a good day.`

Good that Dhiren thought that this am. Hope the feeling has stayed with you.

Under the circs I am so pleased you have an 'understanding' bank (sounds good for a tv advert). David is not mobile enough to visit our bank but he does ring them up alot - to ask very daft questions like where has this £10.00 come from or where is my statement (never knows the time of the month).

This morning I had - what year is it? Answer 2007.
Then that means I am 98!!!!!!!!!!!!! (the distressing thing is his maths ability has always been brilliant and I felt he would be really going downhill when he could not longer add or subtract - whew - ...).

He has now asked ME to help him with the bank statement.

Take care all Jan

 

[Grannie G]

It`s strange isn`t it Jan, how the decline differs. Dhiren is very mobile, a bit wobbly at times but well able to get out and about. He has lost stamina though, and can`t go as far as he did.
He also had good maths skills and can work out his age from his date of birth, but he too is unable to read a bank statement.
Dhiren wouldn`t dare to phone the bank. He wouldn`t know where to begin.
Take care
Love xx


P.S. The good day lasted until now...................`going home` time again............ I suppose I should be thankful it lasted as long as it did.

 

[BeckyJan]

going home` time again

Just thinking about you - we are just about to go through the bank statements!!!!!??????///

This is truly a life in the day of ...................

Take care all who are with us at this difficult time. Love Jan