Im a newcomer

[SylB]

Oh how I wish i had found your site a long time ago. Six months ago my 62 year old husband was finally taken into hospital and then into residential care after only being diagnosed with Picks disease (the non fluent strand) in the previous March. After 5 years of struggling with this heart rending disease and being treated for depression I managed get him (much against his will) to a specialist who came up with the devasting diagnosis. By this time Steve was unable to hold a conversation, could no longer concentrate for more than a short time and within 2 months could no longer tell you who he was, or his address. From being an extremely capable and gentle man he turned into an extremely violent stranger. However there was some consolation in the fact that as he got worse he was no longer tormented by what was happening to him and is now mute. He no longer recognises me and is lost to the world. i am very lucky in that he got full funding and is in a superb specialist care home - where he is very well looked after. But this has left me in a quandry - would we have been better off knowing or was it better to carry on the best way we could for as long as we could. Ill never know. Is there anyone out there in limbo like me? I cared for Steve for 5 years and my sympathy is for you suffers and carers out there. To see the man I loved for 40 years disappear in front of me was the hardest thing in the world. Im trying hard to make sense of all this - can anybody help

My kindest thoughts to you all

SylB

 

[Grannie G]

Hello SylB

Im trying hard to make sense of all this -

Please stop trying, it`s a hopeless task. There is no sense or logic in the progression of any of the dementias, try as we do to find some.

It sounds as if your husband went through quite a rapid decline and it`s such a shame you had no Talking Point before now. Not that it would have delayed progression , but at least you would have been better supported by people who know and understand your struggle.

It is so sad your husband is lost to the world but be thankful he is spared the torture that comes with insight into his condition.

Take care of yourself and keep posting. You will find friends here and feel less isolated. xx

 

[Helen33]

Dear SylB,

Welcome to Talking Point

But this has left me in a quandry - would we have been better off knowing or was it better to carry on the best way we could for as long as we could.

I think with your husband becoming violent, it was very important that you sought a diagnosis. It sounded to me that you did carry on the best way you could for as long as you could You couldn't have been expected to deal with violence without help and support.

Love and best wishes

 

[louise@weinprop]

In limbo !

Hello Sylb - I too had to put my husband who is only 63 years into a home as he suffers from Alzheimers Dementia. I struggled with caring for him and working for 5 years till I lost the battle when he became totally incontinent and could not feed himself or talk. We have also been married for 40 years and I never knew that I could suffer such heartbreak. He has been in a very good Alzheimers Home for over a year now and still I cry every day after visiting him. He was such a wonderful husband and father and now he does not even know that he has another new granddaughter. Now at least I can give him "QUALITY" time when I visit him, whereas when I was struggling at home my patience and health was wearing very thin trying to care for him and work.
You must just reassure yourself that you have done the best for both him and you. You can still care for him but now with the help of trained staff. Just enjoy your visits to him and continue to show how much you love him because he is still in there somewhere !

 

[SylB]

Thank you Louise, Helen and Sylvia

I am so grateful for the support I have received already - it just helps so much to know I am not alone in this - I felt so isolated - even though I am having counselling its not the same as talking to people who have walked the same paths. I feel so down on somedays and on others so positive that Steve would want me get my life back that I feel quite good its like a rollercoaster. Helen you are so lucky to be able to visit your husband and have quality time - because Steve is now totally mute I find it really hard not to show how upset I am - any tips on how I can get through this one - because he is over an hours drive away I am not able to visit as often as I would like and its a case of feeling of guilty because I cant go and then feeling devasted because he doesnt know Im there, when I do go.
Thanks for the music link and support Louise you have made me feel so much better.

SylB

 

[Skye]

Hi SylB, welcome to TP.

Yes, I'm in a similar limbo. My husband John has a similar form of dementia, but without the violence. He's been mute for over two years, and is also completely immobile.

He's in an EMI nursing home, and I visit him every day -- it's easy for me because the home is only 10 minutes away from me.

I go in at lunch time, and feed John. This gives me something practical to do, and also helps the staff. I massage his hands and feet too, because he has oedema. And I chat to the staff, who are always in and out getting people ready for lunch. I find it's so much easier with something to do.

. But this has left me in a quandry - would we have been better off knowing or was it better to carry on the best way we could for as long as we could. :

I honestly don't think it would have made any difference. I knew what John's problem was, but no-one can tell you how the disease will develop, or how quickly. Like you, we had a sudden, dramatic downturn.

Keep posting, if it will help you. There are lots of us in a similar situation.