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

[TinaT]

No matter how hard we try, it still isn't easy to work out what is happening. I can hear your brain ticking over, trying to make sense of it all. Sometimes we can follow the thread of ideas which lead our husbands to do or say something. Sometimes there is no link at all.

xxTinaT

 

[Skye]

Talk about roller coasters, Sylvia.

I hope the man doesn't stay long. Poor Dhiren! Poor Sylvia!

Love,

 

[ella24]

Hi Sylvia

I'm not sure if this will help but my dad is on meds for his Parkinsons amongst other things and whilst he isn't hallucinating in it's truest form, he does experience a sense of seeing someone out of the side of his eye - his Parkinsons nurse said this is a common side effect of the particular drug....

Dad described it to me once as like the sensation you have when someone is there or watching you.... but when you turn your head they are not...

I can't remember which drug it was though... but it may be worth a check....

e

 

[Grannie G]

Thank you Ella..................

You have described exactly how it seemed to me from Dhiren`s description. isn`t that strange.

I suppose several drugs have similar side effects. I will see what Terry our CPN and the consultant think.

Meanwhile we have had another calm and happy day even with the confusion. The man has not been mentioned again and still we have had no sundowning.

It`s all about getting the balance right. If the hallucination isn`t as frightening as the fear something terrible is happening to his brain, the tablets are still working.

 

[ella24]

I'm so glad it made sense - My dad said he wasn't frightened by the sensation (but he doesn't have dementia) but it really feels like someone is there catching in the corner of his eye.

He didn't mention it to his nurse, she raised it with him during a review after a change of meds and he was surprised when she said it to him, which is why it stuck in my memory...

glad things are calmer now

e

 

[Helen33]

DearSylvia

I noticed that Dhiren slept for such a long time and it has obviously done him good. I am so pleased for you both and could almost feel Dhiren's pleasure that he had achieved something useful. Like Sue said, if you run out of jobs you could always loan him to us

Love and a hug for both of you.

 

[Grannie G]

Sue and Helen

I`ll send him round tomorrow.

 

[Grannie G]

I was woken at 4.30am. by lights going on and off all over the house.
Dhiren was dressed.

S `What are you doing?`
D `I`m ready now.`
S `What for?`
D `To go shopping.`
S `It`s four o`clock in the morning. It`s the middle of the night. We can`t go shopping now.`
D `You nudged me and said `Wakeup. Wake up. We have to go shopping.``
S `You must have been dreaming. I didn`t nudge you. I was asleep.`

So he got undressed and came back to bed.

D `I feel a fool.`
S `You`re not a fool. You were dreaming.`
D `Well at least I`m not violent and I don`t hurt anyone.`

 

[Skye]

D `Well at least I`m not violent and I don`t hurt anyone.`

He knows too much, doesn't he? It must be torment for him.

Love,

 

[Grannie G]

Dear Hazel

He knows too much, doesn't he? It must be torment for him

He does and it is.

But I`ve been told it will be even worse when he doesn`t.

 

[Helen33]

Hello Sylvia

D `Well at least I`m not violent and I don`t hurt anyone.`
__________________

This could be seen as Dhiren consoling himself which is very positive.

I hope you both have a lovely day and that Dhiren is as keen to go shopping in the waking hours

Love

 

[Skye]

I'm not actually sure about that.

I know you and Dhiren can have good conversation and discussion on a good day. I envy that.

But it's a trade-off. When he no longer understands, you'll lose the conversation, but you'll also lose the torment.

Or will you? Maybe it will be another kind of torment!

I don't know! This disease is hell, whatever form it takes.

Love,

 

[Grannie G]

Thank you Helen.

This could be seen as Dhiren consoling himself which is very positive.

I think you are right. Dhiren often consoles himself with;
`At least I`m not in pain.`
`At least I`ve not got cancer.`
`I can walk and talk and read.`
and
The positivity continues.......we have done 15 minutes loosening up exercise and half an hour in the garden, with Dhiren deadheading the Hydrangea.
He is so pleased with himself.
I now have to think of gardening activity which does not involve bending down and is not too heavy.
Any suggestions will be received with gratitude.

 

[Margarita]

The positivity continues.......we have done 15 minutes loosening up exercise and half an hour in the garden, with Dhiren deadheading the Hydrangea.
He is so pleased with himself.

That is good news .

I now have to think of gardening activity which does not involve bending down and is not too heavy.
Any suggestions will be received with gratitude.

It it because you want to do it together ?

As I am wondering about the " bending down and is not too heavy"
Is it both of you , that can't bend down lift think that are to heavy ?

 

[Grannie G]

Dear Maggie

It it because you want to do it together ?

It`s because Dhiren wants to feel useful but he has never gardened in his life. If he stays interested it will give him fresh air and exercise, but because of his unsteady gait it needs to be something manageable.

And yes, I`m not good at heavy gardening either. Creaky bones.

 

[Margarita]

And yes, I`m not good at heavy gardening either. Creaky bones

Nor am I , it sets of my sciatica .

but because of his unsteady gait it needs to be something manageable.

unsteady gait

Now Gait is a new word for , sorry am bit thick . do you mean his balance ?

 

[Grannie G]

Dear Maggie

You are certainly not thick. Gait means the way you walk.

 

[connie]

Dear Sylvia,

We have mentioned to each other before that Dhiren and Lionel - along with many others I am sure - have had similar tendancies, but I was so surprised when I read:

`At least I`m not in pain.`
`At least I`ve not got cancer.`
`I can walk and talk and read.`

I though, for a moment, that they were one and the same person.
Oh, the times Lionel would say just those words - uncanny.

.

 

[TinaT]

Ken doesn't think this way but when I say to him that there are a lot of people much worse than we are, he agrees.

I think it is the lucid moments which give me the most pain as it is then that I can see that he does know what is happening to him. It is then that the real Ken appears briefly.

As others have said, I wouldn't have the pain if he didn't have these moments but I also wouldn't ever see the 'real' Ken again. Heart breaking but wonderful Sylvia - these moments of clarity.

xxTinaT

 

[Squibbs]

I'm not much of a gardener myself but when my mother was alive but not very able she enjoyed planting bulbs in raised beds or sitting at the garden table planting them in containers - is this the right time of year for that ? Sue