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Needing help - Page 3 - Carers UK Forum

Needing help

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195 posts
Hi just to let you know i did get in touch with the Adult Social Services team again today to see how it was progressing with my husbands urgent assessment and after basically asking why/where and what for i have a home visit being arranged for Wednesday bit relieved but will wait with bated breath to see outcome.Would like to know pet66 if you did receive my reply as i am not really that internet savvy so it could be a case of pressing the wrong button and it all goes haywire so let me know thanks.
Susan
Yes I've received your PM reply . I'm sorry you have to wait till Wednesday for assessment. Don't forget, they must Not be allowed to fob you off. Night obviously are much worse and they must be made aware.. Talk to them in private if you can. I know your husband may get suspicious. Write everything down that has been happening.
Good luck
Hiya
I googled 'early onset dementia' and found this link. Have a look in case it helps.

http://www.alzheimersresearchuk.org/abo ... alzheimers

Elaine
Thanks pet66 and Elaine will have a look at that site and i am collecting all the information i can also my sister who was a social worker is going to be with me which is good to have someone with a little knowledge of things :) We had a good night son/daughter/grand-daughter where here we had a curry night and even though my hubby sat indoors a lot of the time he did come outside now and again joining in which was good to see and then this morning actually slept from 4 till 8 obviously very muddled when he got up though but we soldier on :)
Good luck, Susan, with the assessment. If my own experience is anything to go by, make sure you describe the worst possible day and THEN exaggerate it. It is a negotiating game. Ask for more than you want in the hope that you get something ....

Good that you will have someone with you. If you feel you can't speak in front of your other half, give them a letter to take away with them.

Anne x
Thank you Anne more than enough he is up and down to bed through the day as he dont hardly sleep at night so i may get the chance to explain things without him being there i have fully prepared myself to give a very detailed account of the worst scenario because i have them, and i am really tired of individuals trying to tell me things that they do not have to deal with or see then walking out my door leaving me to deal with this yet again on my own i am so appreciative of the support people are giving me and it actually gives strength that i actually thought i had lost :)
Maybe keep a 24 hour diary - a day in my life type thing, in 15 minute slots? It can be simple. Maybe have a few code letters - you can choose whatever you like, the following are ideas only.

H for dealing with Hubby,
S for doing something for yourself (!)
W for housework
C for Cleaning up after him
R for rest/sleep

At the end of the day, you just need to add up all the same letters, and divide by 4 to give the hours spent.
Thanks for that bowlingbun very clever idea actually so helpful to know different ways of doing things it is funny what life brings you looking back just a year ago i think to myself what a change and that is why i do go in my little garden at night and have that cry it may sound odd but i need it and it helps me just me :silly:
Hi just to let you know i did not have a visit from Adult SS waited and waited then time went by so i gave them a ring and was told no visit was arranged seemingly a mix up on my part and it was a phone call that was arranged to let me know when they could visit as people are off sick and it is setting things behind but still no visit arranged as need to see if people come back tomorrow after being off so a phone call is pencilled in for tomorrow to be totally honest i am confused over the whole situation WHY? did get a phone call from the carers association though asking me to an appointment on Friday by myself to see how they can help guy on the phone was really nice so fingers crossed.Hubby seems to be developing quite ocd behaviour can anyone advise is this part and parcel of condition :)
Hi Susan. How very frustrating for you! Waiting till today was bad enough. So sorry it's such a let down.
OCD can be part of dementia unfortunately. Esp Lewy Bodies. My husband used to rub and rub at the arm of the chair until I could have screamed.
But, your husband hasn't had any diagnosis yet so how can you or any one guess? I just don't know what to advise. Go to your doctor and explain yet again, and say you fear for his safety? Who is the director of your social services? Can you email and say you are going to the papers and MP?
195 posts