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

[Grannie G]

Farewell from the MHT

Dhiren will not be going to the Day Centre for the foreseeable future so C called this morning to say goodbye.

I thought it was so kind of her to come, she has put in so much effort to gain Dhiren`s confidence and trust.

She received a very warm welcome from Dhiren, and stayed a while. Dhiren joined our conversation, was animated and interested, but after a time became tired and distant.

When C was ready to go, it was obvious Dhiren was relieved, and after she`d gone he said, `She`s really nice, but I like my home to be quiet and peaceful.`

It`s so hard to get it right.

 

[Skye]

Sorry C won't be calling again, but it was kind of her to say goodbye.

I can understand Dhiren liking the house quiet and peaceful, John was the same. He wasn't keen on visitors, even his sons, and hated visiting anyone else's house. In his case I put it down to the fact that he couldn't follow the conversation, but Dhiren doesn't have that problem. Perhaps the effort of concentration is too tiring?

Sorry for you, though. There doesn't seem any way to get you some time to yourself. I guess you have to roll with the punches, at least the aggression has stopped, and presumably now you're on the MHT books, the support can be reinstated if required?

Love,

 

[Grannie G]

Dhiren can keep up with a conversation if it`s on his terms, of his interests and of his choice.

But he does get tired, especially when it is not a one to one conversation. So when a visitor is here, be it C or Terry or even Paul, he will back off after a while and leave it to me.

And yes Hazel, I have been told his place will be reinstated whenever necessary.

Love xx

 

[Jane.B]

What Dhiren said made me remember how pleased Rupert always was when he'd asked me who I was, and I said your wife, and he said I'm so glad. I went to the nursing home where he used to go for respite today to leave some pads and nets that he hadn't used, and the receptionist siad he'd been a lovely person, a gentle giant, and how much they'd miss him coming, I was nearly in tears.

 

[Grannie G]

Hello Jane

What a lovely comment from the nursing home. Emotional it may have been for you but well worth hearing I`m sure.
Love xx

 

[Grannie G]

The shortest sundowning......or is it?

5pm. A sad face.
S `What`s wrong?`
D `I have nothing to look forwards to.`
S `Oh don`t say that.`
D `I`m sitting here rotting. I want to have fun but I`ve no money to do what I want to do.`
S `We can go out every day but when I ask you, you are too tired or too cold.`
D `I want to see my family but I haven`t got a penny in my pocket.`
S `Here are your bank books. You have lots of money. You can do anything you want.`
D `Oh Good. I didn`t know I had this money. I will go to the station tomorrow, buy a ticket to Deoghar, go to my grandparents` farm. They will give me a job and I`ll be able to save.`
S `That`s a good idea. It will be lovely`
D `I must put these books in a safe place.` and he left the room.

I went into the kitchen and five minutes later he followed me.

D ` I`ve put the bank books on the mantelpiece. Will you put them away.`
S `Do you want me to keep them now? Are you staying?`
D `I talk rubbish sometimes, don`t take any notice of me. When you want to go out I will come with you. I will get up early every morning, and go for the papers. Then if you want to go out I will come with you.`
S `That`s better. No-one is stopping you doing anything. You can do whatever you want.`
D `I`ll come out with you every day. I`ll go for the papers in the morning and if you want the Manchester Evening News at night, I`ll go for that too.`

 

[gigi]

Hello Sylvia.....

It`s so hard to get it right.

I'd say it's nigh on impossible...

Because what's "right" one minute can be "wrong" next time...

But as far as you the carer can get it right....you do cope so well with Dhiren's sudden changes.

That takes a true understanding of the person you are caring for.

Interesting about the Manchester Evening News....

love gigi xx

 

[Lynne]

Oh Sylvia ...

Poor Dhiren. He's trying so hard to keep making sense of his world & his feelings, but reality & delusions are merging for him (sometimes) and at others he remembers (but doesn't want to believe) his inappropriate thoughts & reactions. This damnable disease! (... Lest anyone should be in any doubt, I know that Sylvia's pain is at least twofold.)

 

[christine_batch]

Dear Sylvia,

Like Dhiren, Peter did not like going to crowded places and always preferd to be at home.

It seems as if Dhiren is trying so hard to please you.

Love to you both
Christine

 

[Grannie G]

Another appointment

The consultant`s secretary phoned this morning to book another appointment. The last one was in July 2008. I had the choice of this Thursday at 1.30pm. or 29th. October.

Following sundowning at 12 noon today, I opted for this Thursady.

Sundowning
His face looked tortured.
S `What`s wrong? You look awful.`
D `I`ve got to get home.`
S `We come on, let`s go. I`ll go with you.`
D `It`s raining now. `
S `I don`t mind the rain. Let`s go and get it sorted out.`
D `If you will just take me to the station and ask for a ticket to Jamui, when we get there, if you show me where the Central Library [Manchester] is, I`ll know where to go from there. I have lots of family. They will all be waiting for me.`
S `You tell me when you want to go and I`ll be ready.`
D `We`ll have to wait for a sunny day.`
S `We can still go. We have umbrellas. `
D `It`s too wet. But when we get there you will know I`ve not been lying. We`ll get a return ticket and come straight back, but I need to see them.`
S `I`ll go with you whenever you want.`
D `Oh what a relief. I can`t wait`

He still looks so troubled, it`s painful to see. He was nearly in tears when I said I`d take him.I have written and posted a letter to the consultant telling him how upsetting it is and asking if he can help with any medication to ease this restlessness and agitation.

When I told him we have an appointment with the consultant he said, `Good. I`m ready now.` He is desperate for help.

 

[Lynne]

Sylvia, I hope & pray that the consultant will realise how awful the situation is, & can come up with some medication to give you both some relief from this cruel, repetitive torture.

Love & hugs

 

[Grannie G]

Thanks Lynne

At least we won`t have long to wait.

Love xx

 

[Skye]

When I told him we have an appointment with the consultant he said, `Good. I`m ready now.` He is desperate for help.

It's heartbreaking, Sylvia. I do hopr the consultant can help.

Love,

 

[Helen33]

Dear Sylvia

It's good that Dhiren has acknowledged to you that he is ready because if he doesn't remember at the time, at least you will know he's ready for some help.

I have no idea about the medication side of things but I don't suppose there is some miracle drug that will deal with sundowning completely or the problem wouldn't exist. It would be good if there was something that could just take the edge off it. I think that the way you are dealing with the sundowning is excellent as it seems to 'calm' Dhiren rather than to 'spark' him where he could end up in a frenzy.

I just wish the very best for you both and hope that the visit with the consultant is beneficial.

Love

 

[Grannie G]

Thank you Lynne, Hazel and Helen.

Oh for a miracle.

Dhiren has gone from someone who was reluctant to take an aspirin for a headache to someone desperate for medication to help ease his fear. He would take anything now, has even asked to try Aricept or Reminyl again, which is out of the question as the side effects were so frightening.

 

[gigi]

Hello Sylvia,

Am hoping that the consultant can come up with something to ease Dhiren's anguish.

And in turn..yours.

Love gigi xx

 

[Grannie G]

Thanks Gigi

We have had a very peaceful evening, listening to a CD and chatting.

Some of the chat was meaningful and some was very confused, and I suppose, thinking about it, it`s been like that for a long time. But only now am I learning to go along with it and stop challenging it.

It`s a hard lesson.

 

[Grannie G]

He refuses to go.......

Dhiren has refused to see the consultant.

He doesn`t need a doctor. He is better. He will see no more doctors and take no more tablets. He said he is frightened of me and frightened of doctors. We are trying to say he is mental. He doesn`t trust any of us and doesn`t need any help. If he feels ill, he will go to the doctor. He feels fine so why should he go.

His whole body was trembling.

He must get away from here as soon as he can.

So I`ve phoned to cancel the appointment.
The consultant`s secretary said we could have a home visit if I wanted one, but I think it will make matters worse. Dhiren will then feel he has absolutely no say even at home.

So a good day has become an unhappy day.

And to add insult to injury, I received a letter this morning from the Social Worker.
Quote `......as discussed when I met with you in June. I have kept your husband`s case open for the past three months. As I have not heard from you within this period I will now be closing his case to Social Services`.
If I require any assistance in the future, I should contact County Duty Service.


Terry the CPN is due tomorrow. My heart will be in my mouth.

 

[gigi]

Dear Sylvia,

I don't know what to say...except ....hugs..and I understand.

This is the awful rollercoaster....we can't be sure of anything anymore and our emotions are pulled one way..and then right to the other extreme.

The trouble is Dhiren could well change his mind about the consultant...but while he's resisting you can't force him.

I'm so sorry.

As for Social Services....you'd think they could keep Dhiren's file open and review him..even though you're not using them at present..Dhiren's dementia isn't going to miraculously disappear.

Love gigi xx

 

[Brucie]

you'd think they could keep Dhiren's file open and review him

they probably have targets and closing cases adds to work done.

Ho-ho!

If only life were so simple.

Really sorry to hear about this latest development Sylvia. It might be good - if you have the energy - to ask the consultant's secretary if a floating appointment could be held so you could whisk Dhiren in at short notice if a slot was available...and he was willing.