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

[Grannie G]

I`m sorry Christine.

My mother walked the corridors and you wouldn`t know where she got the strength from either. She had so many falls she was sedated.

It was much later before she stopped.

I hope Peter recovers and you soon feel well enough to visit.

Lovexx

 

[Mameeskye]

Hi Sylvia

I am so pleased that there is the possibility of support there for you. t is so difficult when you cannot speak freely isn't it? I remember that so well from the early days with Mum and again with my current situation. These are people you have always been honest with and now you find that you cannot speak freely. It is so very difficult.

Christine,

So sorry to hear baout Peter's fall. Mum wandered until just about a year ago by herself. She was found unconscious on the floor in someone's room..first of the major TIA's. I rememebr the amazement prior to that, when after 6+ weeks in bed she started to walk again. It seems incredible looking back, but we discussed the risks and felt that if it were what Mum wanted, better that she should be able to...doesn't stop the guilt though when you see the cutface.

Mum generally fell though when she had a UTi so it may be worth them schcking Peter out for infection. Sometimes they are jsut not that obvious.

Hugs to both of you

Love

mameeskye

 

[DeborahBlythe]

We had our visit.
She did say she`ll phone regularly to see how things are and to ask when I need someone to come in. So I suppose I will be more able to talk to her then.

Hello Sylvia, it sounds like a reasonably promising visit, but I'm sorry you felt you had to talk in code. That is so frustrating. Would it be possible for you to ring them back yourself rather than wait for her call. Does Dhiren take a nap in the afternoons ever?

She may have wondered what was going on or worse, thought that you were going off the idea.. It would be good to try and cement the situation if you can.
Love and best wishes.

 

[Grannie G]

Hello Deborah

I have spoken in depth to Crossroads by phone and filled in a very comprehensive self assessment. I was then referred to them by C who knows Dhiren so well now.

I`m afraid my efforts fell on deaf ears as this person had not done her homework. She even asked me if Dhiren was able to sign the form.

`Does he take sugar?` Why didn`t she ask him. Others have managed to.
Thank goodness he`s forgotten.

I have had two such contrasting experiences today.
One with C at the Alzheimers Cafe, and with the person who ran the cafe, and with the manager of the Canterbury Branch of the AS.
The other with the co-ordinator of Crossroads.

I will try to explain again when I speak on the phone. All is not lost.

Love xx

 

[connie]

At least the various care agencies are staying in touch with you Sylvia. That, at least, must be a plus. You battled so long on your own.

Hope something works out for you and Dhiren soon.

Love n'hugs.

 

[sue38]

Sylvia,

Thanks for posting about Crossroads. It may be a step we are taking soon and it's good to have some idea of your personal experiences, good or bad. I'm sorry though that you're having such a trying time with Dhiren at the moment. It must be like living with 2 different men, just not sure which one you're going to get, the angry accusative Dhiren or the loving apologetic Dhiren.

Christine,

Sorry to hear about Peter's fall, I hope he recovers soon.

REMIND him that he will have to do a computer test first and then ......

David somehow loses interest in driving again as soon as I mention the computer test!

Jan, that is brilliant. Thank you. Will click that one to memory for the next time the dreaded c word comes up. (Car, that is!!)

 

[Grannie G]

Hello Sue

I cartainly wasn`t expecting to be asked in front of Dhiren if he needed help with personal care.
And I could have done without the exclamation of amazement at the shipping order of medication Dhiren needs to keep him functioning.

Now if I`d been asked if I needd help with Sundowning............
Here we are again. He`s tired and I`m tired and it`s an absolute pain.

 

[Helen33]

Hi Sylvia

It sounds like you've had a very eventful day. Do people ever get help, like a sitting service, in the evening when it might be most needed to help the carer get some respite from sundowning.

I do hope the sundowning doesn't go on for too long tonight and that you get some rest.

Love

 

[connie]

Sylvia, call me a cynic if you like, but when I read:

I cartainly wasn`t expecting to be asked in front of Dhiren if he needed help with personal care.

I just feel that it is asked because they know you won't really tell the truth in front of your loved one.

Helen, evening sitting service would be invaluable.

Certainly in this area neither Crossroads or the local agencies were ever able to help.

 

[Grannie G]

Hello Connie

I told the person from Crossroads Dhiren needs help with the bath but otherwise he`s fine.

What I didn`t say is when I find a dry face cloth I know he`s had a shave but not a wash. And for when I find a wet toilet floor I keep a bucket of bleached water handy to mop it up. And I don`t tell him.

And when he has eaten I anticipate he will wipe his sticky fingers under the table or down the side of the chair so am ready with a damp cloth.

You are right to be cynical Connie.

 

[lesmisralbles]

And that I go through several, no, at least ten napkin's, bib's whatever

Every meal, but, I love that Ron eat's. He loves his food. As for the bathroom, yes, I also have the bleach at the ready. And, there is the bedding.
But, I live in hope, this new SW seem's to be on the ball. She work's part time (don't they all). But I cannot say anything yet, give her a chance

Barb XX

 

[christine_batch]

Dear Barb & Ron,
Keeping my fingers well and truly crossed for you both.
Love from
Christine xx

 

[Grannie G]

Sundowning`s over for tonight.

D `I`ll sleep on the floor tonight.`
S `Why?`
D `Because you don`t want me.`
S `Of course I want you. You are the one who keeps wanting to go home. You are the one who needs to go away. I never want you to go. I want you to stay here.`
D `Take no notice of me. I`m bloody mental.`

 

[Margarita]

Bit later now, in to the evening so hope things have settled . wishing you both Good night restful sleep

 

[Lynne]

D `Take no notice of me. I`m bloody mental.`

Oh Sylvia; poor, poor Dhiren. What mental torture this is for him. I cried for him when I read that.
I know you wouldn't wish it, but his self-awareness is more cruel for him than forgetfulness would be.

 

[Grannie G]

I do wish it Lynne, for my sins. It`s like a Chinese water torture.

 

[Mameeskye]

Hi Sylvia

I really think that Dhiren is going through the worst part of this disease for the victim. When there is awareness that something is wrong but that you can do nothing. It must just be so frustrating for the pair of you.

There is just so much comfort needed for him but you are crying inside with each loss.

As Lynn says this current self-awareness is cruel and torturous.

Thoughts are with you both. It may pass soon it may not, but we are here for you.

Mameeskye

 

[gigi]

Morning Sylvia,

I can only echo what the others have said....

This has to be the worst stage of the disease..for both of you.

I'm so pleased that now you have support from outside to help you through it.

It goes without saying we're all here for you too.....

Love gigi xx

 

[connie]

Ditto Sylvia,

It goes without saying we're all here for you too.....

Love, as always

 

[Grannie G]

Thank you so much

As pre-arranged with me, one week earlier than originally planned, C came this morning to take Dhiren to the day centre.

He refused to go.

He wasn`t stroppy, he apologized for not wanting to go. He was reading about the Spanish plane crash and was very upset, so much so, he could not shake it off.

Then `I` arrived with the intention of staying behind to speak to me once Dhiren and C had gone out.

Of course, the best laid plans of mice and men.....

We talked about disasters and Dhiren was almost defending himself for allowing them to have such an effect on him. [he has always been very sensitive but is even more so since the onset of AD]

So C left by herself and Dhiren apologized for not going with her.

And `I` and I left him in peace and went into the kitchen.
He spent over an hour with me, discussing the ins and outs, and whys and wherefores of Dhiren`s dementia.

He wants to try part time attendance at the day centre, thinking a full day of activities is too much. Also there is a quiet time after lunch which is unstructured and where Dhiren becomes restless and anxious. Part time attendance would avoid it.

I asked if `I` thought it would help if I went too. I would have the cup of tea at the beginning of the session and `fade into the background` gradually, finishing up in the reception area, where I would wait for Dhiren.
And hopefully I would reduce my time there until I was no longer needed.
`I` will discuss it at the next meeting but was very positive about at least giving it a trial.

Then we returned to Dhiren who was unsettled, troubled and becoming argumentative.

`Why are all these people coming?`
`There is nothing wrong with me.
I don`t need monitoring.
I don`t need to go out.
I don`t want company.
I might have Alzheimers but I am not hurting anyone.
I am not going to kill anyone.
I don`t need hospitals.`

And to `I``s explanations it`s just a visit, to chat and keep in touch in order to make sure he doesn`t have to go into hospital again,
`Have you brought any medicine? What treatment are you giving me?`

He wants to live in peace.
He doesn`t want people coming in and out all the time.
If I want them I can have them as long as he isn`t disturbed.
I want attention, he doesn`t need it.
He doesn`t need to talk.
He doesn`t need to go out, he`s happy at home.
If I want to talk, I can talk.
If I want to go out, I can go out

But `I`s skill won him round to the extent that he is welcome to visit again as long as that`s all he does.

Both `I` and C are on holiday for two weeks so we are leaving it for now. But they are not giving up yet and next time I might go too.

After `I` left D was very quiet and subdued and is just coming round to watching the Olympics.