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Where has he gone?

blueviolet

Registered User
Mar 1, 2015
19
My wonderful, loving husband of 42 years has now been diagnosed with moderate to severe dementia. After a car crash 11 years ago he started with aphasia which has progressed and now with the dementia I feel lost and alone. Even with the kindness of others and my two amazing daughters I seem to always be looking back to our happy past and am fearful of looking to the future. Does anyone in my situation feel the same?
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
Hello blueviolet and welcome to TP.

I'm so sorry that you find yourself with a reason to be on this Forum but I know that you will get lots of advice and sympathy whenever you need it.

I'm glad that you have the support of your two daughters but I also hope that you have other support in the form of maybe carers or daycare? Have you and your Husband had assessments to identify what kind of care can be offered to you?

I always think it's probably best not to look too far into the future; after all none of us can predict what will happen to us. I do understand the fear and uncertainty that you feel as most of us probably never factored in Dementia as being part of our lives.

Post whenever you want-whether it's for a rant or specific query.

In the meantime take care

Lyn T XX
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
When this is new to you, it does look frightening for a while, blueviolet. But after a few months, we start getting used to things. All we can do is care for our loved ones, and keep them as safe as possible.

Huge welcome to you, and so sorry you are finding yourself here. There's always a helpful person around, so never be afraid to look us up when you need us.
 

Saffie

Registered User
Mar 26, 2011
22,509
Near Southampton
Where has he gone?
He is still there, hidden under the cloak of dementia and he needs you now like never before.
It is hard to see the person we have known and with whom we have shared so much of our lives change before our eyes but we do - somehow - learn to cope with all the challenges it brings.

As Lyn has said, just take each step at a time and don't look too far forward.
You are blessed with supportive daughters and that will help.
Keep coming here too as there are may here who can identify with how you are feeling and who can help and support you on this journey.
Very best wishes.
 
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blueviolet

Registered User
Mar 1, 2015
19
Thank you all for your kind responses. It does help knowing that other people out there are in similar situations and understand. I know I have to be more positive. My husband has always been my rock and now I have to be strong for him.
 

Bythspirit

Registered User
Jan 26, 2014
34
"Does anyone in this situation feel the same?" - Blueviolet this struck such a chord, frankly I'd be surprised if there is anyone in this situation who didn't feel this way! Personally, on the surface I deal with everything and look after my child-like husband, show a good face to the world, and live very much in the "now" - because that's all we have, the past has gone and the future is difficult to contemplate. Underneath I am sad, annoyed, living a life of quiet desperation. Look for all the support you can get, I recently found what they call "Dementia Cafe" (horrible name!) in our area and just spending an hour with other carers in same position, who can understand and nod helps me a lot. Love and light to all carers. x
 

Bree

Registered User
Oct 16, 2013
242
blueviolet

Yes I can empathise with you, the man I married and lived with for over forty years is gradually disappearing. You never think when you decide to spend your life with someone that it will all change so drastically.

We have a dementia café near us also, but OH refuses to go, end of. You may well have people coming from mental health agencies to see you, if they offer help, take it. Someone is coming again Monday to 'talk to us'.

I don't mean to sound negative, but all I can say is accept what you can't change, be grateful for what you had, many people never have a stable long marriage, maybe never knew love. It isn't easy, it's lonely at times, but we are here for you.
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
I agree with everything that has been said and will only add that given the choice I would have my husband back - dementia and all - right now. Try to find the humour in situations if you possibly can and remember it is the dementia to blame not your man. Loving thoughts WIFE
 

Lilac Blossom

Registered User
Oct 6, 2014
558
Scotland
I think we all have similar feelings Blueviolet. We don't have support group/memory café where we live (small town) - no family here either. It's good that you have your daughters' support.

Welcome to TP
 

truth24

Registered User
Oct 13, 2013
5,725
North Somerset
Agree with the other posters. It is so difficult to lose the person you love but he/she is still there and sometimes, just once in a while, you get a glimpse which is stored away to be treasured. It's a difficult road but you do get used to it, in my case, by trying to ignore the future and living from day to day. We despair and rage from time to time at the waste and cruelty of it all but our love doesn't die.
Sent from my GT-N5110
 

BR_ANA

Registered User
Jun 27, 2012
1,079
Brazil
I began thinking that instead of a mother, I have a baby to care. It eased the pain of loosing my mother. I know it is hard to find 'cute' an old lady, but I did it
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,049
69
Dundee
I agree with the others. It's hard to lose the husband (or wife) you loved so much in this way. It's 14 years since my husband's diagnosis. We've developed a different kind of life. Not the life I wanted but it isn't all bad. In some ways I'm more of a carer now but I still have him and he's still my husband. Slightly different to the one I married but he's still my husband.

Please remember we are all here to support you when you need it. x
 
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pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello blueviolet welcome to talking point, this is a wonderful forum everyone here understands how we are feeling, friends and family don't really know what we go through. It is such a horrible illness l feel for you. Take great care of yourself and get all the help you can
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
Agree with the other posters. It is so difficult to lose the person you love but he/she is still there and sometimes, just once in a while, you get a glimpse which is stored away to be treasured. It's a difficult road but you do get used to it, in my case, by trying to ignore the future and living from day to day. We despair and rage from time to time at the waste and cruelty of it all but our love doesn't die.
Sent from my GT-N5110
My next-door-neighbour - he is only there about once every three weeks for a few nights - once said to me last year that eventually love for the person with dementia dies. His wife has been in a dementia home for ten years now and he visits once every three months "for appearances sake". My love for my husband never diminished - in fact increased as he became more needy - even during the very dark days when he was unable to remember who I was and asked for "his wife to visit if she wasn't too busy elsewhere". Now he is gone I still love him and his memory as much as ever.
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello Wife l agree with you, as much as my hubby irritates, and upsets me, l still love him as much as before Alzheimers, when l can't manage to look after him l would have to see him everyday.
 

Saffie

Registered User
Mar 26, 2011
22,509
Near Southampton
My next-door-neighbour - he is only there about once every three weeks for a few nights - once said to me last year that eventually love for the person with dementia dies. His wife has been in a dementia home for ten years now and he visits once every three months "for appearances sake".
.
To me personally, that sounds a complete betrayal. Very selfish as well.
It also sounds as though he might have moved on with his life in many ways.
That was something that never entered my head as my husband was, and is, after nearly 54 years, so much an integral part of my life and after dementia he became the focus of it. This didn't stop when he went into a nursing home for 3 years either but, in a way, became almost more so as nobody in the home knew my husband as well as I did.
I'm with you wife. x
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
My love for my husband never diminished - in fact increased as he became more needy - even during the very dark days when he was unable to remember who I was and asked for "his wife to visit if she wasn't too busy elsewhere". Now he is gone I still love him and his memory as much as ever.
Cried as I read this, because it echoes my thoughts so much.
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
I too felt like crying, at the post by WIFE, my hubby is getting worse, and I am finding it more and more difficult to cope, today has been a bad one, and I shouted at him, I couldn't help it, but my love for him does not diminish, looking after him 24 hrs a day alone takes it toll I suppose, so like others I agree if you are offered help take it, ( I am still waiting for the offers) but I have been going to dementia cafe, it helps to get out and see others, and hubby does enjoy it, unfortunately the next day always seems to be a bad one. Hope you are ok Blueviolet, I dont post very often but read a lot, and there is such a lot of good advice and love on here. Take care