Advice needed

[Paulaph]

- not sure how to use this. I am a new member and would like to give a brief description of my situation in order to get help/advice from someone similiar.

My husband, John, has Pick's disease (frontal temporal lobe dementia)
Now he is mostly bedridden, stays in the same position in bed unless he is moved, and can only be gotten into a chair with a hoist. He is unable to do anything for himself. He is a big man so I have carers supplied by SS who come in in the morning, afternoon and evening to help wash and change him, in theory it works (I would like to explain that further at a later date). I feed my husband, medicate him, ensure his bowels are regular and take action if not. I shave him, cream his legs and feet, wash his hair etc. John cannot communicate in the ordinary sense but says thing which I can interpret correctly (I hope). He has always been a cheerful man with a wicked sense of humour which still flashes through occasionally. He has always been more ready to laugh than cry.

Recently he has become a little moody and says things which indicate that he is aware that things aren't OK with him but he is unsure what exactly is wrong. He cries sometimes but he is brave and proud man so this not common.

Can anyone advise what I should say to him to help him I feel so inadequate, i cuddle and kiss but I can't tell him what is wrong with him

Paulaph

 

[lesmisralbles]

Hello Paulaph,
I have no advice, sorry
I tell my hubby Ron what he want's to hear.
There will be other's that will reply to youwith far more experience than I have.
Love Barb & Ron

 

[Skye]

Hi Paulaph, welcome to TP.

Your husband sounds similar to my husband, also called John.

My John also has a form of FTD, but his is primary progressive aphasia, rather than Pick's. He's now in an EMI home, because I cannot manage him physically, it takes three carers to deal with his personal care.

John has no language at all, and usually is cheerful. However, he does sleep most of the time, and sometimes appears sad when he is awake.

There's nothing much I can say to him that he would understand, I just have to maintain physical contact, and give him kisses and cuddles. Sometimes he responds, but mostly he doesn't.

It's terribly hard not being able to communicate, but it sounds as if you are doing all you can. Please don't feel inadequate, as long as your John knows he is loved, that's the main thing.

Please keep in touch, you'll find lots of support here. I'm going to ask the moderators to mve your thread to the main forum, where more people will read it.

All the best,

 

[Margarita]

Sorry can not offer any advice as my mother not at that stage yet, even thought she also can not understand what wrong with her , but knows they something going wrong with herself

So I just like to welcome you to TP , hoping that it be some kind of help to you knowing that your not alone .

Thank- you for sharing

 

[gigi]

Hello Paulaph,

Welcome to TP!

I can't advise here..my husband has AD and Vascular Dementia...and is not as dependant as yours.

You and you alone know your husband..it does sound as though your husband has some idea that all is not well.

Can I ask..how old is he?...Do you have a CPN?(Community Psychiatric Nurse)..or a professional person who is dedicated to you ?

I admire your devotion and care..

There will be others on TP who may be able to help more than I can..

You have my admiration and support..

Love gigi xx