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

[Winnie Kjaer]

Hello again Sylvia,
I was just going to bed and saw your reply. That is incredible, it makes one wonder and the first thought is you cheeky little monkey, but of course it is not like that. What you say though is true, it can sometimes be done spontanously but not by command. However I must just tell you about my husband quickly.

We had the assessment last Wednesday and part of it was done by the Senior Nurse in charge of the stroke unit. He runs two hospital units and has a fantastic background in stroke.
He had not seen my husband for 4 years and was pleasantly surprised.
He was here for 3 hours and did a very thorough assessment.
The miracle is that my husband responded to everything he said, including lifting a right hand and a right leg separately on two separate commands. My husband has never done that in the last 4 years. When he spoke with my husband he only said one sentence at the time and only once, waiting patiently for the response either verbally or a sign of response which he eventually got every time. He never repeated a question but just waited and waited and waited.

Afterwards I said how amazed I was and he explained that it is the only way the brain can process the request, question or whatever. If you talk before they answer the brain has to start all over again. If you repeat a question the same thing happens, you are just confusing the sufferer, and what he says works. It is very hard to do because you wait forever.

The same thing happens if my husband does speak, if I do not hear or understand and say pardon, it has gone and he cannot repeat it, so my loss. Fortunately he does not get frustrated when that happens.

You see we learn all the time, even after 4 years in this situation and I am still learning so much.

We are both fine here but have had a rather busy week. Mother's estate has been finalised this week. Massages, meetings and visits plus the garden enjoying the wonderful sunshine. Very hectic but that is better than being bored.

It is too late for me Sylvia I am off to bed. Take care and I look forward to hearing about your next visit.

Love x

 

[Grannie G]

That is amazing Winnie.
I knew about slow processing but perhaps didn`t realize just how slow it was.
When Dhiren was at home, and in his first weeks in residential care, he would stand, but then was very slow starting to walk. I used to say it looked as if his feet `stammered`.
Now , perhaps we do not wait long enough for him to stand.
It`s worth a try.
Thanks Winnie. Good night. xx

 

[sue38]

Hi Winnie,

That's interesting, and makes perfect sense.

The same thing happens if my husband does speak, if I do not hear or understand and say pardon, it has gone and he cannot repeat it, so my loss

My dad speaks so rarely that when he does I can often miss it and, like you, ask him to repeat. Of course he can't.

Today however he was extraordinarily 'chatty'. It made little sense to me, but I just agreed and smiled ... I asked him if he fancied running the London Marathon tomorrow? "Oh yes" he replied with such conviction. If only ...

 

[Winnie Kjaer]

Hello Sylvia and Sue,
Thank for your input Sue, it is so strange all of it and I never think we will quite understand how their brain works.

My husband too has periods usually when he is distressed or just woken up, when he chats away. I find it very difficult to understand him when he is lying down, because his voice gets very throaty, but I love it when he is chatty and can usually distract him from his distress.

My husband too thinks he can do the impossible, like going to the toilet by himself. If I explain that I cannot take him before the carer comes, he says "I will just go by myself then"

The doctor says the brain is not able to recognise their disabilities and that it is not just a matter of not accepting.

There is so much to learn about the functioning of the brain. I do find it facinating but very sad.

Hope you all have a good day. The sun has not quite made up its mind what it wants to do this morning, but it is mild.

Take care
love x

 

[Grannie G]

Quote Winnie
My husband too thinks he can do the impossible, like going to the toilet by himself. If I explain that I cannot take him before the carer comes, he says "I will just go by myself then"

This is just what Dhiren says Winnie.
He would like to come on the computer course with me, so I tell him I`ll have to see if there`s a place.
If I let him live with me, he won`t cause me any trouble and will cook and clean, wash and shop, so I tell him we`ll have to ask the doctor if he`s well enough.
It`s so stressful trying to think of positive responses while, at the same time, trying not to cry.

 

[Nan2seven]

Oh, Sylvia, when Dhiren sounds so willing to help at home, how heartbreaking for you to have to find excuses for him not to come home with you. (Brian does recognise that he can no longer do all the things he used to - all of the cooking, for example.) Dhiren and Brian seem to have so many things in common I often wonder what the difference is between vascular dementia and Alzheimer's - and maybe this is one of them.

Thinking of you and sending love, Nan XXX

 

[DeborahBlythe]

He would like to come on the computer course with me, so I tell him I`ll have to see if there`s a place.

It`s so stressful trying to think of positive responses while, at the same time, trying not to cry.

Hugs, Sylvia. My mum thought she ought to be back at work, not lying around all day. I said the teaching profession had changed a lot and she wouldn't enjoy it these days. (She was 93 when she came up with this notion.) xx

 

[susiesue]

That is so sad Sylvia - in a way I am relieved that David cannot say things like that to me as I don't know what I would do.

Lots of love and (((HUGS)))

 

[Winnie Kjaer]

Hello Sylvia,
That is heart breaking indeed, more so because he is not at home with you. At least my husband is able to stay here for which I am so grateful. I do feel for you and the difficult situation, but you are doing really well.

Nan

I often wonder what the difference is between vascular dementia and Alzheimer's

My husband too has VAD caused by the 3 strokes, he understands a lot of what I say in fact most things and does not appear anywhere near as confused nor anxious as my mother did. She too had VAD after 8 or more much smaller strokes. I really have come to believe that no individial and no dementia runs exactly on the same lines. If they did it would be so much easier to follow guidelines.

The sun decided to disappear completely and it is spitting in between, but I have managed to do quite a lot in the garden.

We are going to have lunch now.

Hope your day is peaceful

Love x

 

[PollyP.]

... he explained that it is the only way the brain can process the request, question or whatever. If you talk before they answer the brain has to start all over again. If you repeat a question the same thing happens, you are just confusing the sufferer, and what he says works...

Thanks for posting that Winnie, it is so interesting. I must try hard to do that when dealing with my Mum. I have noticed that sometimes I will ask her a couple of things together and have noticed that she appears to get mixed up , now I can understand why.

Pauline

 

[Helen33]

I remember Brucie talking about this delayed reaction not too long after I joined Talking Point and I took note of what he was saying and noticed on several occasions that Alan was responding to something that had been said much earlier. I noticed that some things Alan said seemed disconnected from what was happening in the 'here and now' but then twigged that he was responding to something that might have even been said the day previous

Love

 

[DeborahBlythe]

I noticed that some things Alan said seemed disconnected from what was happening in the 'here and now' but then twigged that he was responding to something that might have even been said the day previous

Love

This reminds me of a visit one morning from a dietician when my mum was in the NH. This excellent woman wanted to get a list from my mother of her favourite foods so that the NH would try to provide them.
Hours later long after the dietician had departed, in the afternoon, my mother piped up, out of the blue and apropos nothing that we were discussing, with a statement/demand that 'Yes I DO like milk. I'd like some WARMED milk NOW please.' .. the delayed answer to a question from the dietician.

Lightbulb moments like that made the day for me. Thanks for prompting this memory.

 

[Winnie Kjaer]

Good morning,
Just qa quickie before the carer comes

noticed on several occasions that Alan was responding to something that had been said much earlier. I noticed that some things Alan said seemed disconnected from what was happening in the 'here and now' but then twigged that he was responding to something that might have even been said the day previous

That is exactly what I find with my husband.
He will see something on the TV and talk about is much later, if I have not seen it, I get confused of course, but if it is the news and is repeated later, I suddenly click what he was talking about.

Hope you all have a good day.

We are having a visit from direct payments and a carer with her brand new baby today. (not together)

love x

 

[Nan2seven]

I've noticed Brian doing this more often over the last few weeks, the referring to something as though it were still ongoing. I called it "topic lag" and am now able to see why it happens. Thank you to everyone.

Love, Nan XXX

 

[Grannie G]

Another excellent visit today.
Dhiren looks tiny, I think he must be losing more weight, his legs are so thin. Even so, he greeted me with joy and patted the chair , his chair, telling me to sit down.

Another resident told me Dhiren had said I was working so wouldn`t be coming today. She asked, `Did you work in a Nursery?`
It`s a long time since I worked in a Nursery and it shows where Dhiren is in his time scale. It also shows he communiicates with other residents.

He asked what time the train was and I said I`d have to find out.
He asked about his mother and I said I`d find out how she was.
He asked when we were going and I said when he was strong enough.
He kept feeling his head and said his hair has stopped growing.
It`s a long time since he had hair but he said he wasn`t bothered.

Chicken curry and rice was for lunch and the cook asked me if he`d enjoyed it. I got the impression it was the first time on the menu and was there for Dhiren. Everyone enjoyed it. It was very mild.

After lunch he was about to doze off, so I asked if I could go on my computer course while he had a nap.
He asked how long I`d be and I said `Not long`.
He was happy with that.

 

[larivy]

is so nice to hear how well Dhiren has settled glad you had a good visit love larivy

 

[milly123]

another good day thats what i like to hear from you sylvia makes such a differance doesnt it ididnt see harold yesterday i went to see my greatgrandaughter ln bedfordshire and today ive been on a trip to the lake district enjoyed it milly

 

[Grannie G]

Thanks larivy and milly.

Milly ,it`s wonderful to hear how you are making a life for yourself.

Love xx

 

[maryw]

Sylvia, Totally admire how well you handle the situation - just amazing xxx

 

[sad nell]

Sylvia thats so good to hear, my love to you both Pam