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

[zonkjonk]

dear sylvia,
this just highlights how far removed D is from reality now
what a marked change from 1-2 years ago
stay strong
love from Jo

 

[Grannie G]

Two sides to every story

I have posted Dhiren`s side.

C****`s side.
She spent the full day with him apart from the lunch break she was forced to take.
He was nervous.
He was tired.
He asked how far he was from home.
He asked if I knew where he was.
C**** tried to interest him in a jigsaw, he was not very interested.
He read the paper and discarded it.
They read the paper together and discussed the headlines.
He helped to set the tables.
He handed everyone a napkin.
He had lunch at a table with three other men. [I forgot to ask if he talked to them]
He cooperated with a Jigsaw Puzzle....C**** handed him the pieces and he placed them.
He completed the jigsaw.
He agreed he had enjoyed it.
He said he would go next week.

C**** was surprised he`d reacted quite as strongly with me but advised me to persevere.
The OT joined us. She advised the same.
The Clinical Psychologist joined us. She advised the same.
They all tried to impress on me how necessary it was for me, that it should succeed. They were very understanding of the effect it was having on me but were thinking long term.

The OT impressed how important it was for Dhiren to have a change in environment, and interact with new people.
She reminded me of his moans and groans about the memory Clinic 8 week course but he still attended.
He needed to become less dependent on me. I needed some respite.

I asked what do I do if he refused to go.
They agreed a fair amount of flexibility.

If he refused to go. C**** would come and take him.
If he refused to get dressed, he could go in pyjamas and get dressed there.
I should not give any advance warning, just tell him on Monday morning to get ready.

I spoke to the Admiral Nurse. She said if I see any `manic` expressions again I must phone the CPN.

I am extremely grateful for this level of support and feel so much better now.

When I got home, Dhiren was looking out of the window.
The gardener had been , he had paid him.
I told him C**** had been at the support group. He said `I think I saw her yesterday.`

 

[andrear]

HI Sylvia
It sounds as though it may be worth persevering a while to see how things turn out for Dhiren. As it was his first day it would have been very strange for him altogether. Perhaps not telling him in advance may be the answer, you can only try and see how it goes.
It does seem as though you are finally getting some good sound support and advice.
Keep strong Sylvia.
Love AndreaX

 

[Canadian Joanne]

Dear Sylvia,

My gut feeling is not to put him under any more pressure and keep him at home for as long as possible, accepting help for myself only.

This may be what you decide to do BUT

They all tried to impress on me how necessary it was for me, that it should succeed. They were very understanding of the effect it was having on me but were thinking long term.

Long term is how we have to think. There will definitely be an adjustment period but I think you should give it a few more tries before giving up.

I should not give any advance warning, just tell him on Monday morning to get ready.

I think this is very wise. Just as an example - as a child if my mother told me ahead of time that we were going to my grandmother's, I would end up feeling extremely sick on the bus the entire 45 minute ride. But when she just popped us down to the bus stop, I had no time to work myself up into a lather. And I loved visiting my grandmother.

Love,

 

[Grannie G]

Thank you Joanne and Andrea

I will take the advice as everyone is being so supportive. And it was pointed out to me that I will very likely reach the stage where it has to be.

 

[Skye]

Dear Sylvia

It does sound a bit more positive, and you're getting amazing support.

I never told John he was going to daycare until he was up and dressed, otherwise he got very agitated. In fact, I found it best not to mention it until the bus drew up at the gate. Someone would come to the door to collect him, and he'd go like a lamb!

You'll decide for yourself whether it's worth persevering, but if it's at all possible, give it another go. As they all said, you have to think long-term, and you certainly need the respite.

Love,

 

[Grannie G]

Thanks Hazel

I had to tell Dhiren because I had to wake him. He sleeps so late and it takes ages for him to get washed, shaved and dressed. And if he rushes he gets flustered. And the transport will come between 9 and quarter to ten.

But I will try again next week, especially as everyone else is putting thenselves out to help.

Love xx

 

[Jane.B]

When Rupert first had sitters I told him in the morning (they come in the afternnon) and he got very aggitated, so I gave up telling him, now after nearly two years he wouldn't remember after five minutes if I told him, so when Ann comes I just say here's Ann she's going to keep you company whilst I go and do a bit of shopping, and he's fine. Yesterday when I got back I heard him ask her if she was his wife.
When he goes into respite care, our daughter comes to fetch him and when we get there he's quite happy to go into the NH, though he's sometimes a bit upset when I go, though they tell me he usually settles quite quickly.
I guess though, that Dhiren understands a lot more than my poor Rupert.

 

[helen.tomlinson]

Dear Sylvia

What a rollercoaster ride you've just been on emotionally but it sounds like you've reached a bit of solid ground after your meeting.

One step at a time eh.

Love to you and Dhiren

Helen

 

[gigi]

Forewarned is not forearmed....

I've been thinking about this..

When Rupert first had sitters I told him in the morning (they come in the afternnon) and he got very aggitated, so I gave up telling him,

It's about entering their world...we as carers must prepare and organise.....
But those we care for do not need to know..it does seem cause agitation when we try to prepare them in advance. Trouble is you get used to sharing..and it seems wrong not to share...

All part of the learning curve...

Love gigi xx

 

[alfjess]

Hi Sylvia

I never told my parent's very much in advance, when they were going to daycare, because Mum would then worry and become agitated.

Just before the transport came I would get their shoes and coats on, ie. providing Dad had got up from bed, if not he didn't go,but I told Mum she was going to her club, or if that didn't go down well, she was going to work.

Maybe I made a mistake by saying work, because before she went into care, she was about to be expelled from daycare, for upsetting other service users. by clearing the plates and tables before they had a chance to finish eating or drinking. She was a catering manager when she worked, but the little white lies still got her to daycare and gave me some respite. but poor other people -- who didn't get to finish their lunch --
Dad was easier to cope with

Hope Dhiren does become used to daycare. You need the time to yourself and maybe he will enjoy it, but like my Mum won't admit it

Love
Alfjess

 

[jenniferpa]

I've been thinking about this recently: partly because, I suppose, I was never given this option with my mother. When dementia comes as a result of strokes, then the whole thing is less progressive. One minute you're fine (or at least so so) and the next you need more help than day care can provide. Still, I think she would have benefitted from a more structured interaction with other people, partly because one of the things dementia seems to do is rob people of their ability to entertain themselves. I don't hold out hope that she would necessarily have remembered that she had been entertained, but it would have made me feel better. Actually, thinking about it, some things did "stick" (a trip on a canal boat comes to mind) so maybe it would have been worth it.

I'm sorry that the experience wasn't one of alloyed joy, but I think you're wise to at least try to continue for a while. True, Dhiren may be less stressed if he's at home with you, but you may have to harden your heart to get the benefit for yourself. I don't know how you do that for a spouse though.

Love

 

[lesmisralbles]

I dont know how you do that

True, Dhiren may be less stressed if he's at home with you, but you may have to harden your heart to get the benefit for yourself. I don't know how you do that for a spouse though.


And I do not know how to do that either
But you are right
But not harden the heart, more understand that we the carer will go under if we do not have a break.
Barb X

 

[Grannie G]

I don't know how you do that for a spouse though.
Love

I`ll just have to try.

But saying that, it has taken till this evening, from Sunday night, for the atmosphere between us to be relaxed and `normal`.

Love xx

 

[BeckyJan]

Hello Sylvia:

How is it going now and how is Dhiren?

Love Jan

 

[Grannie G]

Hello Jan

Things have got back to `normal`, slowly, slowly, drip by drip but I haven`t mentioned the Day centre once.

Tomorrow afternoon, C is coming and tomorrow morning our CPN is visiting for the first time. So we shall be busy.

This afternoon Dhiren saw the diabetic norse at the GP` surgery. She wasn`t very happy with his glucose levels and will consult the GP. She didn`t seem happy with the adjustments that had been made to his medication at the hospital either.
So I don`t know what to think. Who is right and who is wrong?

His reflexes, blood pressure and pulses were fine but she asked if he got enough exercise. He became uncomfortable and said he would start walking again tomorrow. She stressed the importance of exercise to keep his circulation going.

She asked if he was depressed, which I believe she is expected to, and he said he was fine and had nothing to be depressed about. And she said it was another reason to get out and about, to have fresh air and exercise, to make hime feel better. But he only speaks for the here and now, he is unable to speak for an hour ago as he can`t remenber how he felt an hour ago.

While we were waiting for the taxi home, he went to the toilet and I had a chance to speak to the receptionist. I asked her to pass a message to the diabetic nurse. I was unable to speak in front of Dhiren but he has little stamina for exercise and is unable to pace himself. If he gets overtired it increases his confusion and then he gets stroppy and aggressive.

I felt the diabetic nurse may know about diabetes but not much about dementia.

How have things been for you and David.

Love xx

 

[BeckyJan]

Hello Sylvia:

Isn't it incredible to find the different medical specialists do not communicate with each other. The whole process becomes long winded because we have to keep battling to keep them informed. No wonder the NHS is short of cash!

David is ok. There are now more periods of 'aggression' - nothing so serious to require intervention, but I know he is 'out of sorts' with himself. The bad moods are only directed at me! It is so unlike him.

I hope all goes well with CPN and C.. tomorrow.

Love Jan

 

[Cliff]

Dear Sylvia,

I realise how lucky I have been compared to you.

Have just read your last five pages and know how you must be waiting for the next emotional crunch and waiting.... Don't suppose you truly realise how tired you are.

Lots of love to you, especially you - you need it,

 

[Grannie G]

Hello Jan.

After so much positive support, this appointment threw me.
1] the GP`s diabetic nurse was asking me why the medication had been changed.
2] the medication Dhiren is on is slow release, so according to today`s nurse the full dose could be taken at once, whereas according to the hospital nurse it was too high a dose to be taken in one.
3] the emphasis on exercise was inappropriate for someone who tires easily, becomes confused and aggressive when tired, and is unable to pace himself.

We see the consultant next Thuirsday so I will discuss this with him. But he was the one who brought the diabetic nurse into the hospital as he was the first to say he wasn`t a diabetic specialist. The same way the nurse doesn`t know enough about dementia.

 

[Grannie G]

Hello Cliff

It is beginning to take it`s toll now. I do feel tired.

It is draining just talking to each other, as the talk is inappropriate, the questions so repetitive, the mood swings constant and life is unpredictable, literally from minute to minute.

Is Dee eating any more Cliff?

Love xx