Desperate

[jayne b]

Hi Everyone
It taken me along time to register(apart from the fact I'm pretty hopeless on the computer)I feel I need to connect with people in my situation.Until about Feb 2009 my husband was sucessful DJ for adults and childrens parties and although I didn't think so then, we had a fairly idyllic life.Thats all changed,he started to forget things and we made all kinds of excuses,then after all sorts of problems we sort of learned the truth,I say sort of,as he,s just had a lumber puncture to confirm what type of dementia.Even now I still can't believe it.The hardest part is he won't talk to me and has lost all emotion towards me.I feel so lonely and desperate,and guilty for asking for help as I know everyone reading this is,is an awful situation to.If anyone can help I would be so grateful.
Many thanks
Jayne B

 

[larivy]

hi jayneb welcome to TP not sure i can help as i care for my mum but sure someone will be along to help larivy

 

[sallyc]

hi jayne b. I look after my grandad so, again, can't offer advice about your husband. I just wanted to say hi and welcome. You truly have come to the right place. Everyone here is so helpful and supportive, and there's bound to be someone who can help you. Love sal x

 

[pinkann]

pinkann

Hello Jayne. I related to how you were feeling as soon as I read your e-mail. My husband was diagnosed in Nov. 2009. he too started forgetting things etc. I feel devastated now as I realise just how perfect our lives were before this terrifying disease struck. I too am a very new computer user and find it difficult to find my way around the site, but there are some wonderful people who will answer your e-mails, all in the same boat as we are. I worry about the future, Will was brilliant at Maths so naturally did all the bill paying, accounts etc, but now he can't remember so I am having to learn to sort things out, and I'm pretty hopeless. Will was diagnosed with Vascular Dementia after having a series of small T.I.A.s. Transient Iscaemic Attacks.
Please write back to me anytime. I'm sure we'll be able to help each other along this difficult road. Take care. Ann.

 

[Scottie45]

Hi Jayneb

Hello and welcome to TP,sorry you had to find us,but i am sure you will find the site very helpful,sorry i can,t help you as i care for my mum,but there are others here who care for their hubbys and i am sure they will be able to help you,take care Marian x

 

[Rosalind]

Hello Jayne
The one thing you must not do is feel guilty about asking for help. The trouble with we Brits is we have the 'mustn't grumble' attitude, and when asked by social workers, Commmunity Psychiatric Nurses etc we say we are coping even if we are not.
There is help out there, but you need to make it obvious you need it. When my husband was still living at home, I had 'befrienders' come and chat to him, take him out for haircuts etc, via Alzheimer's Support. One, in particular, was a godsend, who even in the end took Guy to the care home when he moved there permanently. The local Carers Association were also good, as they are on the carer's side.
Your situation is not a bundle of laughs, and your husband's lack of emotion and not discussing the situation is all too familiar to me. Make sure you have some 'me' time - it really is essential to keep you functioning.
I found some like minds through this site, and commend it to you.

Good luck, and remember you are not alone.

Rosalind

 

[Grannie G]

Hello Jayne

Try to imagine how you`d feel if you had been given the diagnosis your husband has. It is possible he is traumatised by the news and is cutting you out of his life because he can`t face you. Or it is possible the news is just so devastating he cannot talk to you about it.
Or it is possible the form of dementia he has denies him emotion.

Youe husband seems to have lost his emotions. My husband`s emotions increased, but were not always the emotions I would have chosen as he was often very angry and aggressive.

Living with dementia is a very lonely time. The partner we have shared everything with is often no longer there to share.
So please rely on Talking Point [TP] for your support. You are not hopeless on the computer. You have posted your message and received replies.

Keep posting. xx

 

[Izzy]

Hi and welcome. Keep posting. Izzy x

 

[christine_batch]

Hello Jayne,

Welcome to Talking Point. My husband was diagnoised age 57 with Alzheimer's.

Talking Point along with the local Alzheimer's Branch and my family helped through so much. More importantly, I was able to put things on Talking point as so many of us are and have walked the same path.

One thing I will say NO NOT FEEL GUILTY. If you want a moan, advice you will meet virtual friends.

Best wishes
Christine

 

[Nanak]

Hi Jayne
Glad you have found TP. It is my Mum not my husband who is ill but there are many on here who will give you help, support, and advice.
Keep posting!
Kim
Mum 12,500 miles away

 

[Helen33]

Hello Jayne,

I do hope that you find the help and support that you need from Talking Point. Your post reminded me of myself when I first registered a couple of years ago. I cared for my husband but he died recently of another illness. Talking Point was a lifeline to me when Alan was alive and it is still a huge support to me now that he has gone.

I am making a huge assumption in thinking that perhaps your husband has a form of Fronto Temperal Lobe dementia which does affect speech and language and can also affect empathy. My assumption is based on the fact that he had a lumbar puncture. If I am correct, my husband had a semantic dementia of the fronto temperal lobe and there are others using TP who are caring for husbands with it.

There is a lot more information about FTD now than a few years ago. Naturally, if my assumption is incorrect, just ignore this post but don't ignore the fact that I am sure you will find the help you require by posting and reading and becoming a part of Talking Point

Love and best wishes

 

[timthumb]

welcome jayne b

you have just made the first of many positive steps............ you really have found a wonderful place in tp

please keep posting

tim xxx

 

[BeckyJan]

Hello Jayne:
Welcome! You will see already how friendly and supportive the TP is to us all. My husband has Mixed Dementia (ALz and Vasc.) - after going through the various stages he is now in a NH!

It is a wretched disease but you will find much support here - pleased you found us.

 

[Sam Iam]

Welcome Jayne,
I am pleased you have found this site (and sorry at the same time xx).
I care for mum 82yrs AZ.

There are a wealth of people here Jayne who can help you/empathise with you as they are in the same situation as yourself.
And there are some member's here who can give you the correct information re you husbands care as in pointing you to the TP information or through personal experiance.

Even just typing "how you feel/what has happend" down can help so much.

Take care of yourself and HUGS XXX

 

[janlyn]

hi jayne glad you have joined tp you will get lots of help and support here my husband has ftd and the drs think he has a form of alzhimers he is waiting to go to london for a lumber puncture as the drs say they can have some idea of what form of alzhimers lyn may have please keep posting you will find lots of firendship and advice here sening love xx