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

[Grannie G]

Not the best of days today.........................treading on eggshells, keeping talk to the minimum in case I say the wrong thing................

D `When do I get my pension?`
S `Every month.`
D `Do I get it from the post office?`
S `No, it is paid into the bank.`
D `Which bank?`
S `My bank.`
D `Why is my money paid into your bank?`
S `So there`s enough there for you to pay half the bills.`
D `Why isn`t it paid into my bank?`
S `Because that is what you agreed.`
D `Why don`t I ever see it?`
S `Because money for the bills is taken first by Direct Debit. Wharever`s left is for spending or saving.`
D `What`s left?`
S `You banked £100 this week.`
D `Did I? Where is it?`
S `In your bank book in the drawer.`

So he gets his book out, can`t be bothered going for his glasses, so struggles to read the amount...........

D `I`m going to take some out now.`
S `Why do you need to take any out? You have a wallet full of money. It`s not safe carrying so much money with you.`
D looks in wallet and smiles, `I forgot.` Then, in temper, `Don`t you tell me what I can do with my own money. It`s my money, what`s it to do with you.`
S `You can do what you want with your money, but I know you are carrying enough. That`s why I am so quiet today. I can`t talk to you. Everything I say is wrong.`
D `I was born wrong.`

 

[carolr]

Phew what a day, I will send you a hug and say keep your chin up tom may be better, I know this wont help but I wish my Dad was still able to worry about his money it was a constant headache for my Mum, now he doesnt care less, I think that I would rather have him as he was before than how he is now.

 

[BeckyJan]

Sylvia: hope this evening and tomorrow are better. As we say 'day by day'!!

We started this am
shall we fill the bath with water?
Me: Why?
Cos of the water shortage, we can't do without water!!
I think you have been dreaming.

Later: What are we going to do about this water shortage?
No problem we will sort it out.
Later: We should be planning to see your Mum soon
Me Sorry but she died a long time ago
Oh, I was forgetting

Has been in strange mood all day: Did not want to go to Day Centre, so I think that has finished for good now (big sigh here from me!).

Keeps asking me what he can do - can I help - can I help All day long.
When I suggest, say ,cleaning door windows, a little hoe round the garden, - no I will leave it till later. He cannot truly do anything, but so desperately wants to -how do we cope with that?

I feel very frustrated. I was trying to plan some respite for next year but seeing his reaction to day centre and my agreeing to him NOT going, makes me realise how difficult it is going to be. I am just praying some Godlike intervention will sort me out.

Best wishes all Jan

(I have been thinking about Skye all day and wonder why should I moan).

 

[Grannie G]

(I have been thinking about Skye all day and wonder why should I moan).

I know Jan, it`s all relative isn`t it?

Thank you for your conntribution to this thread, It`s interesting to see how others cope and the kind of repetition involved.

The respite and day care is another issue. If they [our husbands] feel their most secure with us, yet still demonstrate such anxieties, is it unkind to expect them to have days, and nights, with strangers?

Carol would like her father to be able still, to worry about money. I think I`ll be glad when this stage passes, but as I`ve no idea what the next stage will bring, I suppose it`s back to `day by day`.

Take care Jan.

Love xx

 

[bel]

what a fantastic thread sylvi

i can only read a bit at a time
but i and others can relate to it big time
i am struggling with bob but if i had the guts to join in i know i would feel better
lots of love to the best moderator ever
love bel x

 

[Grannie G]

Please join in bel.
Love xx

 

[Grannie G]

Are we at a new stage?...............

We have had a very fraught couple of days. Continual friction, loss of patience on my part, feelings of hurt, anger, exasperation...............

How much longer, this obsession with money?
How much longer this obsession with Manchester?
How much longer this obsession with going home?
How much longer this total disregard for our marriage?
How much longer do I take the aggro?
How much longer am I expected to switch my emotions to suit his?
How much longer am I expected to forget the pain he is still able to cause me?
How much longer must I plan for holidays we will never see?
How much longer must I cover his confusion?
How much longer must I hide his mistakes?
How much longer must I pretend everything is normal?

 

[Brucie]

Hi Sylvia

perhaps you are at a stage when a new medical assessment needs to be made.

I found that when I came to desperation point, that was when the assessments happened. I have sometimes wondered if that was the way they used to get me respite, as well as trying some new regime of medication.

What is clear is that something needs to happen, for both your sakes.

please take care

 

[BeckyJan]

Sylvia:

Whatever stage Dhiren is in it is obvious from your last post that YOU are in a new stage - that is of needing more help.

On some other thread someone posted on the lines that the 'squeaky clean never complaining' types get overlooked - perhaps your engine needs to make more noise!

I know I should listen to myself here, but you will be a better person for Dhiren if you could get a break. HOW to get and to handle respite is another question - one I keep asking myself.

Take care Jan

 

[connie]

Sylvia, the stage is that "you need help".

You do so very much to keep Dhiren on an even a keel as possible, but at what cost?

Maybe Bruce is right

I found that when I came to desperation point, that was when the assessments happened. I have sometimes wondered if that was the way they used to get me respite, as well as trying some new regime of medication.

I know that you now need more help than you are being given/offered/asking for.

Maybe time to think of yourself a little more, to enable you to continue to care for Dhiren as well as you do.

Take care sweetheart.

 

[Grannie G]

Thanks Bruce, Jan and Connie.

Dhiren last saw the consultant on 28th September and he has referred him for day care.

At the Relative`s Support Group I learned that in order to make sure he is with an appropriate group, at his level, an assessment will be made at home. As far as I`m concerned, with this type of procedure, it`s a lost cause. If someone comes to the house and starts putting him on the spot, asking him questions, he`ll freeze and walk out.

He has attended the memory clinic for 6 weeks. I will ask why he can`t be assessed from that.

I accept I need help. I would love him to have some day care. But no-one seems able to do it the way I feel is best.

 

[germain]

Dear, Dear Grannie G,

Read your last post with a sinking heart - you have been so inspirational to me and I always look for your "day" first on the threads.

Two things come to mind

the answer to your "how long" is forever - because you love him - and despite what AZ does the love goes on (even tho' the "like" may be difficult to find sometimes)

please get more help - even if Dhiren is going to be awkward - he'll forget after a little while - how can you love him forever if the stress and strain of caring develops the dislike parts to such an extent that you crack up with it ?

I always used to respond to my daughter when I got the usual childish - you don't love me any more" - "I don't like what you are doing now - but I will always, always love you - regardless"

Take care and look after your self for both your sakes.

Germain

 

[Grannie G]

Thank you Germain, I`m going to try to find a way round it.

Love xx

 

[ROSEANN]

A Day in the life of

Dear Sylvia
Don`t know if you remember me posting a while back about my husband going to day care, but he to did not want to go and if the truth be known I think he would still be staying at home if I did not put my foot down.
I know that sounds cruel but I need that break if only for a few hours, he still remembers on Sunday night that he goes on Monday but after four weeks he has stopped moaning about going and goes off smiling.
He then comes home telling me about the poor souls who go and what a shame some of them have no one to look after them and can we send them some biscuits next week.
We did not have an assesment so J goes to quite a mixed group of people but he is getting used to it, it helps that daycare is run by our local Alzheimers Cafe and they tell me he`s the star of the show which makes me laugh because I hardly get a word out of him some days.
I do hope you get some help Sylvia believe me those few hours do make a difference.
Thinking of you love
Roseann

 

[Grannie G]

That`s what I was hoping for Roseann.

In my innocence I thought there`d be a natural progression from the memory clinic of one and a half hours to day care. I had it all worked out, it was going to be a better `memory clinic` and I was [supposedly] going to the relative`s group next door. As both are held in the same hospital location, it would have been so simple.

But life isn`t like that, so I`ll have to see how I can work my way round it.

There is only so much Dhiren will take. he thinks I`m a dominant bully already, but there is no way I can `put my foot down` and insist he goes anywhere. He considers himself a free agent, there is nothing wrong with him and he doesn`t need help from anyone.

To manhandle him physically into something he does not agree to isn`t an option, but that`s the only way he`d go, if he knew what it really was.

 

[Canadian Joanne]

Dear Sylvia,

Even though it may have already been suggested, is it possible to tell Dhiren it's a volunteer position to help others? That's what I did with my mother when she went to day care. She went 2 days a week and it worked well for some time.

If Dhiren was not a joining type of person that would be harder. Still, it's worth a try. Perhaps if you can discuss an approach with the day care staff, perhaps you & he can "drop" in and a staff member ask him to help & volunteer because of his expertise in ____________ (whatever he takes pride in).

About the day care:

But no-one seems able to do it the way I feel is best.

If your way is not working, start looking at other ways. Perhaps what you feel is best may not work. It's hard to let some control go, as I know exactly what you mean by saying "the way I feel is best". I feel the same about my mother but I have at times (grudgingly) gone along with the suggestions of others & have been quite surprised when it worked. I've learned from that though and am more willing to try things that I think won't work. If they don't, that's fine but if they do, well, it's a win-win situation.

I think you definitely need some rest. Take care of yourself please.

Love
Joanne

 

[Grannie G]

Thanks Joanne,

I know I should be more positive but Dhiren is the most negative person you could know. He hasn`t the confidence to volunteer, he is so wrapped up in his own problems he has no thought for anyone else, and he has never been a `joiner`.

I think the majority of women are far more able to join and volunteer and see the benfits of interaction, even with dementia.[ I daren`t say too much for fear of being branded sexist. ]

My husband wants someone to wave a magic wand and make it all go away. He still believes there is a magic wand that can make it go away. If he gives in and goes to day care or respite, he will have to accept where he is and what he has, and he will lose all hope.

He isn`t ready yet for that.

 

[Canadian Joanne]

I know what you mean about negative people. They can certainly suck the life out of one.

There have been some studies that say people with wider social circles & interactions seem to be less likely to develop AD. What about taking that & putting a spin on it for Dhiren? i.e. the more he joins in with others, the better. You could say the reluctance to think of others is a manifestation of AD. At this stage in his disease, it might be the prod that could get him out to day care and help preserve your sanity.

Are there no AI societies in your area where he could at least discuss India? Let's avoid Manchester for now . YOU need him involved in something so you can rest your tattered nerves. See if there are any societies or social groups that would be able to handle someone like Dhiren. He's not the first. Do you belong to a church? I realize that you probably haven't been able to develop much of a social circle in the last 5 years because of Dhiren's disorientation.

Ask around as much as possible. People really do like to help.

Take care.
Love
Joanne

 

[Grannie G]

Oh dear Joanne, while you`re tearing your hair out trying to help, this converstaion has just taken place.

D `We are all right, aren`t we?`
S `Sometimes we are. Sometimes it`s very difficult.`
D `What can you do? When my head is bad, I`m bad, but we`re all right now aren`t we?`
S `We`re fine.`
D `Sometimes my head is bad, but I have got to grin and bear it.`
S `I find it very upsetting. In fact it`s heartbreaking.`
D `What can you do? People are worse off than us. We are fit, we are healthy. We shouldn`t complain.`

and tomorrow is another day................

 

[Grannie G]

He has just brought me a cup of tea and began reading over my shoulder, so I was discussing some of the posts with him.

D `I am really lucky.`
S `Is that because you have me?`
D `No. It`s because I haven`t got true Alzheimers.`