Variant Form

[Barrie]

My wife was diagnosed with Alzheimers Disease in Dec.2000 and we were told that the form it is taking is rare in that the first signs were loss of her peripheral vision on the right hand side of both eyes. She also had some colour blindness which is unusual in a woman.
She has been on medication to slow the illness but it has now progressed and affects her co-ordination and communication. She lost the ability to read and write about two years ago.
Originally diagnosed at the National Hospital in London she was eventually transferred to our local hospital in Essex. The consultant that she is currently seeing her does not have any other cases that are following this same pattern. The dementia nurse has raised her case at meeting of others in the profession covering three counties and none of them have a patients following a similar pattern.
My wife’s memory is very good both short and long term
I have the experience of looking after my wife, whose eye sight has 90% gone and is not able to do much on her own, but I wonder whether there are any other carers with experience of this condition following a similar pattern, with whom I could share experiences.

 

[nikita]

i think the disease effects everyone in different ways, but with similiar symptons, we were told by grans gp 2 years ago we would not have her with us much longer meaning months, but she is still going strong, she cant write but can read certain things ie sweet wrappers, her eye sight is very selective but she does have cattaracts in both eyes.

 

[angela.robinson]

hi barrie .to night after visiting my husband in hospital i cant concentrate to well ,but your post rings a bell ,my husbands problems all seem to stem origanalyfrom sight problems ,as if he was going blind ,and very little problems with memory ,after 5 years of his skills deteriorating still apearing like sight problems .all the other symptoms kicked in. the dementia has taken hold in all forms now ,i would like to discuss this later when i can get my head round what is happening to day .ANGELA

 

[ElaineMaul]

Hi Angela,
Just to say, I hope you are feeling a bit better today. I am thinking of you and sending you 'good vibes' .....

Yesterday afternoon, I got round to watching the Ch5 programme starring Mia Farrow about early onset Alzheimers that was on the other day ...... found it very moving. Even more so when I realised it was based on a real person ........ although I guess it could have been based on a lot of people's stories.

What shone out for me was that it is because we love the people affected that we do what we can ......... I sensed from your post that you must have had a hard day yesterday ...... but I'm sure your husband knows that you love him.

Take care wont you

Elaine

 

[angela.robinson]

THANKS ELAIN ,i did have an horrendous day watching my husband being treated in the A/E who are not geared up for AD patents they had him in a side ward because he was disturbing other patents but he his not use to being left on his own .flat in bed all day ,they ttried to prop him up but he was so distressed he was all over the place i have spent 6 hours a day with him and dread going homeihope to morrow he will be transfered to the assesment ward and out of bed,or i may bring him home ANGELA

 

[ElaineMaul]

I hope tomorrow goes well for you Angela.

When my father-in-law was in hospital, the staff didn't seem to have any idea of how to cope with dementia. My mother-in-law went in every day from about noon to the end of visiting ...... and she was basically doing his nursing care ..... encouraging him to eat and so on.

They initially were living in Haringey, North London ...... the quality of care re social services and carers was terrible! After a particularly bad period in hospital ..... where the family had all sorts of problems arranging alterations to the house (a long story!!!) ..... we pursuaded them to move to Cheshunt, Hertfordshire. It was the best thing we could ever have done. Their ground floor maisonette over looks their little garden and a schools playing field so there was always something for him to look at. Plus the carers and the whole organisation was so much better.

Unfortunately, they were only there about 6 months before his final illness but things were much better.

I hope you have access to support if he does come home? We got a lot of assistance from Age Concern ..... no doubt the Alzheimers society also has help lines? We never actually contacted them because (despite the obvious signs of dementia) he was never formally diagnosed with it (which in hind-sight seems incredible).

However, this forum is fantastic. Wish I'd known about it then (4 years ago now). At the time, the biggest problem was getting a grip on how the 'system' works.

Elaine

 

[angela.robinson]

HI BARRIE,, your wifes problems do sound similar to my husbands, JIM started having problems at work over 8 years now he was a skilled slaughterman and one of the best i was told , his eye test did not show a great deterioration but was showing some range of vision on the right side of right eye he started to have problems in most thing ,like writing ,and reading ,it seemed once took the pen away from the last word he could not find the right place and the next word would be lower or higher the reading when he reached the end of the line he would begine lower down the page ,Cups where put on the end of the table and drop ped of ,after his first scan we were told it was a stroke at the back ,right side of head ,and this would affect the message to sight ,not to be confused with eye sight ,things continued to deteriorate ,but to me i could not see any problems with his memory ,after 2 more scans we were told there had been no stroke it was A/D THEN THERE WAS PROBLEMS WITH USING CUTLERY,up to 2 years ago all these skills had gone,there was problems with spacial awareness and focus mobility and yet he was very aware of these problems and still had good memory ,although he scored low on his test there ,today he is severly disabled his speech has gone his mobility ,and is incontinant but still knows his close family ,ANGELA

 

[Sandy]

Hi Barrie,

Welcome to Talking Point. I'm also pretty new here too.

My father-in-law (84) was diagnosed with AD several months ago (though the short-term memory problems have been there for 12-18 months). Your post made me curious to find out more about vision and AD, as my father-in-law's vision seems to have also changed somewhat over this period.

Some web sites do indicate links between change in vision and AD. For some people with AD, there can be changes in how they perceive motion (more of a series of freeze-frames rather than a continuous flow), and colour (a higher percent of people with AD have degrees of colour-blindness than in the similarly-aged, non-AD population). There is also some mention of how high-contrast design can help people with AD recognise certain features (I may get that bright red bowl for my father-in-law to keep his keys and bits after all).

Does your wife have macular degeneration? Some research indicates that this can be linked to AD in certain cases.

Two web sites were interesting, so I'll pass them on to anyone who is interested:

http://www.alz-nca.org/aboutalz/vision.asp - Good general article on vision and AD

http://xnet.kp.org/permanentejournal/winter04/vision.html - This is a fascinating but complex article by an eye doctor. I have read it over several times and probably only understand 20% of it. He's attempting to explain how various types of visual abilities could be affected by AD (I think). The information on vision and driving was interesting.

Hope this helps.

Take care,

Sandy