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

[gigi]

Well Paul has given me an escape route and I will certainly bear it in mind if there`s a next time.

Sylvia..does Paul ever stay with Dhiren while you have a couple of hours to yourself?

Hope you don't think I'm prying..but would that work? Or be possible?

You've probably thought of it yourself..if so then ignore me!

I thought that if Paul could commit to a couple of hours here and there.. or on a regular basis...it may be good for you..

And good preparation for any future problems?

Love Gigi xx

 

[sue38]

Sylvia,

I had a nasty feeling you were going to catch the bug, as you probably did. If it is the bug my sister and I had it is very strong and would lay Rambo out.

I am not surprised you are snapping at Dhiren. When I had it I bit my mother's head off for ringing to see if we were alright. She asked what she could do? "YOU COULD STOP RINGING AND LET ME SLEEP!"

It seems as though it has alerted you to what arrangements are in place if you were ill for any length of time, so maybe it's an ill wind...

I hope you are feeling better soon. Be careful, as when I had it I had not been ill for months, but no sooner had I recovered from the vomitting bug than I got a really bad cold. I even took a day off! Unheard of for me!! It really does lay you out.

 

[hendy]

Hi Sylvia

Hope you are going to be better soon. Dhiren seems like he's beginning to get over it. Really just what both of you didn't need.
take care
hendy

 

[Chrissyan]

Get well to both of you, what a terrible time. Sounds as if that bug could floor an elephant.

 

[Grannie G]

Sylvia..does Paul ever stay with Dhiren while you have a couple of hours to yourself?

xx

No Gigi you are not prying but Paul doesn`t even have a full weekend free, they are either shopping or ferrying the children to lessons or having friends of the children for sleepovers. And he tries to have a round or two of golf.
I`m just grateful he watches the football with Dhiren and I get a bit of space there.
I`m also very conscious he is an only child and don`t think it fair all the responsibility lies with him.

 

[Cliff]

Hello Sylvia,

Being a carer is not easy is it. Being a mother makes it even harder. Being so devoted to the 'cared for' quadruples the determination. Being so - add your own worries and then think about what you are to serve for lunch tomorrow and the day after and the.......

Love to you and Dhiren,

 

[Grannie G]

Last night............
D `I`m losing my language.`
S `What do you mean?`
D `I`m losing my English.`
S `You are speaking in English to me, now. I can`t understand Hindi or Bengali. If you didn`t speak English I wouldn`t know what you were saying.`
D `Are you sure? What a relief.`

I do hope this is not a taste of things to come.

 

[gigi]

do hope this is not a taste of things to come.

Is there a possibility that Dhiren could lose his English?

I hadn't thought about that..if it's not Dhiren's mother-tongue...there must be some research into that somewhere..

Hope you're both recovered from the bug!!

Love Gigi xx

 

[BeckyJan]

Hello all:

David has only ever spoken English - but he is just beginning to lose the ability to speak. Do you think Dhiren might be progressing into that stage and is using loss of English as a sort of cover.

Like you I hope not - as with David - being able to communicate is one of the few things they have left. It is a sad stage and I am very aware that many here have loved ones who have already lost that power of speech.

I hope you are feeling better now Sylvia.
Love Jan

 

[Grannie G]

Dear Gigi and Jan,

I have been told it is likely Dhiren will lose English before he loses his mother tongue. This is in spite of learning English at school and living here longer than he lived in India.

The other night he spoke to me in his original language. When I couldn`t understand, he was exasperated with me and became quite scornful. I continued to insist he wasn`t speaking English and it was the only language I knew and eventually he seemed to mirror my language and reverted to English.

I am fully aware of the upset when other sufferers lose their language, but they don`t have an alternative to fall back on. If Dhiren loses his English and remains fluent in languages I don`t understand it will be awful.

Last night was the first time he had made any reference to his language skills. I just hope, becuase he is still recovering from the virus, he is more vulnerable.

 

[gigi]

have been told it is likely Dhiren will lose English before he loses his mother tongue

That's what I wondered...not a pleasing prospect for you, Sylvia..hopefully it's a temporary set back, as you say..

Love Gigi xx

 

[Skye]

.

I am fully aware of the upset when other sufferers lose their language, but they don`t have an alternative to fall back on. If Dhiren loses his English and remains fluent in languages I don`t understand it will be awful.

That's a terrible prospect, Sylvia.

I've had two different examples. When my mum had her stroke, she talked nonstop, but it was complete gobbledegook, not a single word recognisable. She used to get so cross with me, because she was convinced that she was speaking English.

With John, it was a gradual loss of language. We had a few occasions when he got cross, but most of the time he knew that he wasn't finding the right words, so his impatience was with himself.


If Dhiren loses his English, but continues to speak Hindi, I guess it will be more like my mother, and that's so hard to deal with.

I hope for your sake it doesn't happen for a long time.

Love,

 

[Grannie G]

Thanks Hazel.

When your mother had her stroke, did she still have receptive language? Very often, stroke patients can either speak or understand, depending on the side of the brain that was damaged. So although you couldn`t uderstand her, could she still understand you?

With John, did his expressive and receptive language fade together or in a similar way to stoke patients?

Sorry if it`s too painful to discuss but it does help to learn as much as I can about it.

Even though I know when you have seen one person with Alzheimers you have seen one person with Alzheimers.

Love xx

 

[connie]

Sylvia, just butting in here with my observations of Lionel.

Over the past 8 months his language has steadily declined to a point now where it is virtually non existant.

However his understanding declined at an even faster rate.

Are the two connected, who knows? In his case every other ability has declined as well in that space of time.

 

[Grannie G]

My mother lost her expressive language but retained verbal comprehension for a long time after.

Thanks Connie.

Who`s to know? I don`t suppose any of us can prepare ourselves no matter how hard we try.

Day by day.

 

[Skye]

Hi Sylvia. Yes, my mum could understand me, so I could talk to her. The trouble was when she thought she was answering. The sad thing was, it took me about a month to discover why she was refusing to eat, and was pulling her naso-gastric tube out. She managed to get one word out comprehensibly, the name of a rehab unit where my father had been briefly, and which she hated. I managed to reassure her that she wouldn't be going there, whatever happened, and she indicated that she would eat. Too late, she was already too weak, and had pneumonia. Sad, sad, sad.

With John nouns went first, then the rest of language. He stopped understanding more or less simultaneously. Then he lost the ability to read, but could still draw, so he was able to copy anything I wrote for him, though it didn't mean anything. It wasn't words, it was shapes.

Your story of asking Dhiren to get you a glass of water rang bells with me, this happened to us quite early on. It was explained to me that although John was quite capable of getting himself a glass of water when he wanted one, the message that that was what I wanted just wasn't being received by his brain. You need to use a lot of sign language.

Hope you're both feeling better today?

Love,

 

[Grannie G]

Your story of asking Dhiren to get you a glass of water rang bells with me, this happened to us quite early on.

Oops! I thought it was because he was suffering a virus infection and had been woken up, so was more confused. I didn`t connect it with his concern he was losing his language.

Thanks Hazel, there was probably a connection there I didn`t see.

Love xx

 

[Kate P]

Hi Sylvia,

I hope this "language" issue is just a blip for you both.

Mum has been unable to speak for about 14 months now - maybe a bit longer.

Occasionally she will whisper an odd word but it's few and far between. It's hard to know whether she still understands us - she understands that my dog has died but then when we ask her to pass a spoon she has no clue what we're talking about.

It's a very long and tiring game of charades - and I never liked charades that much anyway!!

The odd thing is that although mum can't speak or read (as far as we can tell) she can still sing all the words to songs.

As with Dhiran and the likely hood that he will eventually return to using his "mother tongue" - I think it shows that the brain is an imensely complex and little understood thing.

 

[Grannie G]

Thank you Kate.

We are both so much better today and the language difficulty has not reared it`s ugly head again, so i`m keeping my fingers crossed.

Funny really because now he has recovered, and he was quite ill, lost 7lbs and is still not to full appetite, he seems more alert about certain things.

He asked me to phone Paul this morning to see if the family was all right going to work and school in the gales. He said he was frightened for them.

And has made his own breakfast, cereal and toast, washed the dishes and put them away.......not in the right places, but who cares.

 

[Skye]

That's brilliant news, Sylvia.

I'm glad the infection hasn't had any lasting effect.

Love,