I want to be a wife

[Izzy]

My experience was rather like Jean's. A bit different I think though as Bill was with me at home until his last week and even then I slept in the hospital room with him. Bill had a diagnosis of dementia for 15 years and was showing signs of it before that. We had no children (by choice) so it was always just him and me.

My relationship with him naturally changed as the years went on. It was inevitable. I was especially lucky that he could still tell me he loved me right up until almost the end - well, the week before he went into hospital. I don't know if he really knew what it meant by then but I will always tell myself that he did.

Like you Jean I now look at his photos and it's the old Bill I see.

Trisha I can remember your feelings so well. The times I just wanted to be looked after like I always had been. Just thinking of all of you who are experiencing that feeling now. I know how tough it is.

 

[Casbow]

I can feel and agree with everything you are all feeling and having to deal with. I miss him so much. He has become "away with the fairies" in a world of his own. He tries to talk to me but it might as well be a foreign language. I try but cannot even guess what he is trying to say. He has been very bad this week. I felt he was unwell but didn't know what was wrong. The only thing that I knew for sure was that he hadn't had his bowels open (which is not unusual) but it had been for longer. (I keep a chart so I know,) Anyway he finally managed to go yesterday late afternoon and then a miracle happened. Today he got up at 9.00 and although very tired was in a much better mood and now at 8.30 p.m. he is still in a nice mood. Day before yesterday he was in bed for 21 hours. I only got him up then because of my son helping me, and it was not easy. Needed him out of bed to change him. He would not co-operate at all, for all that time. So I am telling you this in case your PWD has bowel problems it might be a reason why they become more difficult.Meanwhile I hope you all have a good day tomorrow. As best you can.xx

 

[jennypie]

Trisha I feel for you I know exactly how you feel I am in the exact same position the loneliness and loss of love and togetherness memories gone depression wanting to run away thank god for friends and family who bring me some normality - if I don't have a bit of that everyday to look forward to I really don't know how I would cope! Sending you a big fat hug xx


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[canary]

I find I am wearing a professional carers "hat" most of the time now to protect me from hurt over the things that he says and does.

I would like to think that this will eventually change, but I know that I have lost the husband that I married, even though his body is still walking and talking.

 

[Trisha4]

I try to have a 'normal' as possible time, each day, with Stan, but, then I think to myself, what was 'normal', it is so long ago, I can hardly remember the way we were. Today, I read your post. Exactly how I feel Trisha. You couldn't have said it better in any other way. I wish I could make it go away for us. I do hope you are feeling a little better today, sending you lots of virtual hugs and love. M xxx

I struggle to remember 'normal' now. I am feeling a bit better thank you. Deterioration seems to be with us most f the time now.


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[cuppatea]

Nothing new to add but I echo what you say. (((hugs))) to all in this dreadful position

 

[Trisha4]

Nothing new to add but I echo what you say. (((hugs))) to all in this dreadful position

And hugs back to you x


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[Rageddy Anne]

Clinging here to the faint hope that he might still know me as his wife, if only a little. He looks at me sometimes with such puzzlement in his expression, and I can sense his doubts. If someone tells him my name he brightens up, and says" of course" but I'm not sure.

It's a long bereavement, losing sight of a little at a time...and I think he's aware too that he's losing me.

Horrible cursed illness.

 

[vannesser]

Read

I so agree Trisha. They say there are three things that make a marriage like a tripod. The emotional love, a physical relationship and the intellectual relationship (shared interests, the going out or staying in together stuff) if one of those "legs" goes a relationship can still be pretty good - lots of marriages do. If two go there is really not much left.

I find it very hard to still love someone who is not the person I married, who does not / cannot share the things we used to enjoy (travel, art, eating out, walking, theatre), and seems quite indifferent to how I am feeling or what I might want or need, who shows no affection or physical attraction for me. I am only 66 - my husband is 81.

I had started to make more of a life for myself - meeting friends on my own, going to galleries, having lunch. And I have managed to keep working two half days a week which is a life saver.

BUT the last week or so it is becoming clear I can only leave him for increasingly short periods and I really really really can't face being a 24/7 carer. I feel so trapped and desperate.

After reading your post .things are not bad here as ho only diagnosed last April with vascular dementia.i go out with a friend 3dsys a week while my daughter looks after him .i know this will change over the years as he changes in the year and there is 16 years between us (ho 74in June .me58 last December)hope I can cope later in life

 

[Badger8496]

I try to have a 'normal' as possible time, each day, with Stan, but, then I think to myself, what was 'normal', it is so long ago, I can hardly remember the way we were. Today, I read your post. Exactly how I feel Trisha. You couldn't have said it better in any other way. I wish I could make it go away for us. I do hope you are feeling a little better today, sending you lots of virtual hugs and love. M xxx

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[Bethanyengland]

I empathise

Dear Trisha

I totally empathise. I had an abusive upbringing - I need love and cuddles and intimacy. For over 10 years my husband has treated me at best as a "work mate" we ran a business together and at worst as someone who did not even count.

However, my situation is a little different and I want to share. I have been with my husband for over 20 years. He was always "cold" and I used to ask him to be more passionate, romantic and warm. That was 20 years ago. I am convinced he had undiagnosed autism/aspergers. The coldness combined with strange acts and "quirky" behaviour has me convinced. It's convincing the others though so I feel lonely in my grief for a difficult marriage and now the situation I find myself in.

My heart goes out to you Trisha, it's okay to think of yourself - as human beings we have been programmed to think of others but you have to come first.
Hugs to you
bethany x

 

[dancer12]

Dear Trisha

I totally empathise. I had an abusive upbringing - I need love and cuddles and intimacy. For over 10 years my husband has treated me at best as a "work mate" we ran a business together and at worst as someone who did not even count.

However, my situation is a little different and I want to share. I have been with my husband for over 20 years. He was always "cold" and I used to ask him to be more passionate, romantic and warm. That was 20 years ago. I am convinced he had undiagnosed autism/aspergers. The coldness combined with strange acts and "quirky" behaviour has me convinced. It's convincing the others though so I feel lonely in my grief for a difficult marriage and now the situation I find myself in.

My heart goes out to you Trisha, it's okay to think of yourself - as human beings we have been programmed to think of others but you have to come first.
Hugs to you
bethany x

Hi Bethanyengland:

Thanks for sharing. My husband was always the same way, always called him cold & unfeeling. When I'd ask he'd say it wasn't him it was me so I began to think I just wasn't good enough. I'd always give the kids extra love in hopes of making up for the love he never showed them, but a mother's love isn't the same as a father's. My younger son is all by himself all the time, he says it makes him happy. I used to think it was because he was bullied as a child, but now I wonder. Maybe my husband gave him something after all. Must check aspergers & autism on computer.

Again, thanks for sharing.

Have a nice day.

 

[APPLEANNIE]

I want to be a wifr

It's really just so hard. I feel abandoned. My husband is gradually leaving. My family say they understand, but they just don't. The exhaustion (both mental and physical), loneliness, worry are taking their toll and there is so little energy for anything else which makes you more isolated. The only people who can possibly understand are those who experience it for themselves. As the saying goes, who cares for the carer! X


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I know just how you feel I also feel that I am alone and that my family do not realise what is going on. I want to scream what about me I am also disabled with diabetes and neuropathy and retinopathy . It is a struggle but when you can not even have a conversation you just feel so alone You are so right who cares for the carer. I hardy recognize my husband now He is just someone who lives in the same house as me.

 

[jenniferjean]

I really do miss conversation with my husband. Sometimes he does something strange or new, like yesterday when shopping and he kept wandering off. When I came home I wanted to tell someone about it and was upset when I realised it was him I wanted to tell.

 

[suze]

feel for you

Hi ia56 I do feel for you for I could have written those words myself. It is very lonely when you cannot have conversations, when behaviour is bizarre and apparently inexplicable (thinks water is dripping on his head, always thinks he has dropped something, talks to the tv etc). When was your husband diagnosed?
chin up
x

I have never posted in any chat room.... But found this site and feel so alone I just read everything for two hours! This thread struck my heart. I hate that my husband who was the strongest most reliable person has gone. I cry every day and want to be his wife but I'm just the person who cares for him. I feel guilty beacause I want a holiday, sleep, a day out without drama but he can't help it.

My two stepdaughters think he's ok but believe me he's not. He tries to be OK for them but they don't want to admit what they see.

I will care for him until I can no longer but it's the hardest job I've ever done.....I did work hard, travelled a lot had huge responsibility but I never knew how this caring life would be.

 

[Daisy Garden]

Having just had a very "sad" few days realising that I'm now going to have to "live" without the same person I married I was so glad to find this thread. The "guilt"'I was feeling about not being strong enough to accept this has been lightened a little now that I know these feelings are not unique to me. Big hug everyone X

 

[Bojangles]

Know your feelings!

I don't want to be carer, I want to be a wife. I want to be cuddled and loved. I want a partner, a companion, someone to talk to, to go out with, to share things with. I feel sorry for myself, I feel sorry for Mick. I love him, I hate what Alzheimer's has done to him and to us. I hate it that he doesn't know and I can't talk to him.
I'm sorry folks. I just had to say it tonight.




I can identify completely! I'm hurting real bad too.

 

[PalSal]

You are a wife.

Deaar Trish,
I know there are many of us who can relate to your comments.
It is a tough path, but you have a choice each of us do. I am not someone who could make the choice to walk out. I get frustrated and rant. I know I was cheated. I was 48 and OH was 49. I kow it was going on for some years befoe diagnosis. OH is now 64...it is the long goodbye.
But in the end I do care what my children, my mother in law and my in laws think of me. I am doing my best to honor my commitments and my personal principles. And that is my stuff.
But I try not to judge what others do or how they handle this kind of life. I think people are very brave who recognise they are not themselves carers, and do not try to take on caring. But I am too fearful of being judged. But in some ways I know that I feel it is important to care for him as long as possible, as I think he would have done the same for me......but I will never know because that is not my story

 

[Tequila]

Dear Trisha4

Thank you for saying exactly how I have been feeling. I know it's my husband who is ill and who has to live knowing that he won't get better. But I still feel cheated and I, too, do not want to be a carer.

He resents me for having no patience; I resent him for not being who I need. I wish I'd had a pound for every time he asks me if we should split up - and I know that's because he feels so insecure. But I still can't talk to him about it.

And it's not going to go away.

 

[Dutchman]

Don't want any of this

I look at the earlier pictures of my lovely wife, full of knowing and bright and I feel like crying. I'm loosing her gradually. Today she couldn't tell the time, looking at her watch till it made sense. She moans about the government all the time while looking at Facebook and gets angry at me for having the same emotional response. I'm finding that I'm more and more just keeping quiet to avoid a row. I don't want to be a carer although it looks like I'll have no choice. I worry about the future because I know there will be big changes in her personality (she has vascular dementia). I understand the probable life expectancy is 5 years, give or take. What a terrible situation. I'm just feeling miserable and anxious and sorry for myself but to have our expected normal future stolen away makes me mad. We now waiting for the DVLA to say she cannot drive or come in for an assessment which I know she'll fail. More grief, anger, misery.