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dementia journey - Page 15 - Carers UK Forum

dementia journey

Tell us a bit about yourself here.
167 posts
I have a problem that, no matter where I look there doesn’t seem to be a straightforward answer.

Was I, in some way, to blame for my wife’s dementia. I keep going back to the something that happened while we were on holiday. We were sitting in our room and suddenly Bridget lost her breath and had to sit quickly. This happened again the next day. I believe now it was minor strokes. Without an immediate diagnosis I’ll never be sure and this haunts me. Why didn’t we go to the doctors then, why didn’t I insist? I was weak and didn’t want the inconvenience to be honest. Bridget seemed ok for the rest of our holiday. That’s why I believe I’m a selfish man, I really only think of myself.

I know this is all history now but to be convinced that I did nothing to contribute to Bridget’s dementia, that it was there waiting to happen anyway, would be some form of comfort.
And perhaps I’ll never know.
Peter
Peter
This is so like my situation. My husband had something strange happen when we were in France. Well actually before we set off. We packed the car, he got in and said come on then let's go. All the doors were open, passports on the side....
He was so vigilant, would check and double check for such important things. Would even check when I said had done it. I should have said we can't go but didn't. In France he was holding on to me as though he had a stroke. Wouldn't hear of seeing a medic. I should have been more strict, but wasn't. Hubby was a very intelligent man with a thirst to learn.
This is very common. Similar stories from others visiting loved ones in the nursing home. Was always very sad to hear, but made me feel less like it was my fault. It's no one's fault when the dreaded dementia starts.
Ps, was I glad to get home from that holiday! Was absolutely terrified throughout.
Don't keep torturing yourself like this.
Just don't give the Guilt Monster any head space.
I’m getting through each day as best i can like most of us. Some days are ok some not so good.

I’ve got up, had breakfast, gone back to bed to read ( it’s warm) and will go out later for a walk with a friend. I’m getting a load of walking in!

Some of the overarching emotions that i feel, and i suspect others do to, are the feelings of regret and guilt for the things i did or didn’t do and things i said and the anger and spiteful things i said, in frustration i know, but said and done nevertheless.

All quite normal i agree but powerful and very hard to resolve. I need to be forgiven. The person i want to forgive me is my Bridget and she can’t do that now. So i need someone else because i can’t forgive myself. So i’m going to ask for forgiveness where i can find it. You maybe, but i wouldn’t be so presumptuous. My counsellor is someone i trust and i could ask her. I really do need this as it’s a burden i want to put down.

As i plan today i have to remember to visit Bridget even though i know it’ll bring me upset. The home have decided not to resume inside visits till mid April. In a way i’m glad because i think actually holding her and touching and speaking direct will mean i’m upset even more in different ways.

Bless you all, Peter
Peter, these feelings of guilt, going over what you should or should not have done are all part of the normal grieving process.
Did you give Bridget dementia? No.
Did you do your best? Yes.
Did you get cross at times? Yes
Were you utterly exhausted? Yes.
It's incredibly SAD that Bridget got dementia, you know that in the end caring for her needed more than one person to keep her safe. Not her fault, not your fault, but Dementia's fault.
Please blame Dementia, get cross with Dementia, not yourself.
Oh dear, I’ve just done some sorting out of drawers and found a pile of greeting cards. One was from Bridget to me on my birthday in December, the December before she left for the home the following August 2019.

She was really struggling then but still recognised me as Peter her husband. In the card she just wrote “Bridget” in writing that was torn from the remains of what she could manage. Her name was scrawled and almost illegible but she really did try but her brain let her down and dementia got her again.

So I’m upset again knowing a woman who once taught English to my wife who struggled over every letter of a word. Evil doesn’t even come close.

peter
I threw away some things that hurt me too much. Then they couldn't hurt me any more.
Just returned from seeing Bridget. My counsellor said yesterday that had you won the Nobel prize for caring you still would’ve managed to keep Bridget at home for much longer.

Could I have spent thousands adapting the home
( possible) , got carers in 24/7 ( possibly). I could have done all theses things but she still would have wanted to escape the house and then I’d also be living with someone who couldn’t give me love and companionship as her husband.

Was that selfish to need her to be placed in the home? Because I know many who manage without love and comfort and just keep going. These are the emotions I wrestle with every day.

Peter
Peter
Please try to stop this wrestling with your conscious. If you don't it's going to end up with you having a breakdown. Bridget will still be in the home, being cared for. You will not be able to see her at all. The if,buts and whys are not making any difference to Bridget's dementia situation, but they are to you.
Peter,
I honestly think you should change counsellors. I don't think the suggestions and comments from the one you had are very helpful or constructive.

My Auntie had dementia and my cousin photocopied her wobbly signature to sticky labels and they had a jolly time each year sticking the labels into Christmas cards etc for family.

In time you may view her efforts as a sign of her love for you rather than as painful reminder of the effects of dementia. However if it only gives you pain, I agree with BB, throw it away.

Melly1
167 posts