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How do I deal with the guilt?

Chris##

New member
May 21, 2021
3
0
Hi, My wife of 54 years started to show changes in behaviour some while ago, I was accused of hiding her things and having interest in other women, etc. there were rows and violent attacks, but it was not until the police became involved that I realised that there was more to it than I thought I did not want to believe that she suffering from Dementia or Alzheimer's but she was sectioned and the doctors confirmed that she was, This occurred three weeks before we were due to move to a new house, a house that she had chosen, the paperwork had all been done so I am now living there by myself. I have the support of our two sons, my sister and most of our friends. she is in a nursing home some distance away. My sons and I make sure she gets a visit every day and ensure she has all the material things that she needs. This all started in May last year and I was talking to a family friend of many years yesterday he asked how I was coping, it was then that it suddenly hit me that I am consumed with guilt as although I miss her terribly I can now take our dog for a walk without retuning to a third degree interview about how many women I met and talked to, or if I went to the shops, why had I taken so long, who was I with. and where had I hidden her keys, passport, debit and credit cards, her money, I was perpetually walking on eggshells, I am now living a less stressful life but I am finding it hard to accept that she is unable to understand why she cannot come home. She believes she is working at the nursing home and complains about the poor pay, and has struck out at three people since being there. The diagnosis is that she is a danger to herself and others. It is a lovely house but it is not a home without her. I realise that the above is a bit garbled but I just started to type and it all kind of tumbled out.
 

canary

Registered User
Feb 25, 2014
18,878
0
South coast
Hello @Chris## and welcome to Talking Point.
When someone moves into a care home it is such a big change that it makes a huge impact on the main carer (which you were, even if you didnt realise it) that takes time to adjust. Your head knows that your wife is in the right [lace, but it will take time for your heart to catch up.
 

Dutchman

Registered User
May 26, 2017
1,825
0
74
Devon, Totnes
Hi, My wife of 54 years started to show changes in behaviour some while ago, I was accused of hiding her things and having interest in other women, etc. there were rows and violent attacks, but it was not until the police became involved that I realised that there was more to it than I thought I did not want to believe that she suffering from Dementia or Alzheimer's but she was sectioned and the doctors confirmed that she was, This occurred three weeks before we were due to move to a new house, a house that she had chosen, the paperwork had all been done so I am now living there by myself. I have the support of our two sons, my sister and most of our friends. she is in a nursing home some distance away. My sons and I make sure she gets a visit every day and ensure she has all the material things that she needs. This all started in May last year and I was talking to a family friend of many years yesterday he asked how I was coping, it was then that it suddenly hit me that I am consumed with guilt as although I miss her terribly I can now take our dog for a walk without retuning to a third degree interview about how many women I met and talked to, or if I went to the shops, why had I taken so long, who was I with. and where had I hidden her keys, passport, debit and credit cards, her money, I was perpetually walking on eggshells, I am now living a less stressful life but I am finding it hard to accept that she is unable to understand why she cannot come home. She believes she is working at the nursing home and complains about the poor pay, and has struck out at three people since being there. The diagnosis is that she is a danger to herself and others. It is a lovely house but it is not a home without her. I realise that the above is a bit garbled but I just started to type and it all kind of tumbled out.
Hello @Chris## . Welcome to the Forum. You are not alone. I have to stress this. Here you can hang your heart out and pour out your feelings. Generally most have been where you are now…..I have, although not exactly.
Guilt. Now that’s something I feel now and again but not quite so much now as my Bridget has been in a home for over
2.5 years ( see my thread “dementia journey”).

The only real thing that has calmed me down from a suicidal wreak to just about coping is time. And there’s no way round this. Meanwhile please be soothed somewhat by the knowledge that you cannot cope with this alone ( a very general misapprehension), she’s cared for by professionals, if you had her back you life would go into a tailspin and that’s no good for her.

Great you have your dog and your sons. I had no one. Treasure this
 

northumbrian_k

Volunteer Host
Mar 2, 2017
2,458
0
Newcastle
Hi @Chris## and welcome to Dementia Talking Point.

What you describe has some echoes of my wife's beliefs and behaviours. She always had somewhat of a jealous streak but dementia made this worse. All the female neighbours, my 'ex boss' and so on were fodder for her wild, imagined stories.

By the time she moved into permanent residential care that phase had subsided somewhat. I had time to plan it so this may have lessened the guilt I felt. I knew that it was the right time and the best thing for both of us.

You have not had the time and opportunity to recognise what is needed, or to plan for and adjust to that reality. Instead of moving to a new house and a new phase of life together, you find yourselves apart. This was due to force of circumstance and not anything you could control. Try not to feel guilt that - in some ways - your life has become easier.

Living apart does not mean that your life as a couple has ended. All those years that you have been together remain important. In some ways your wife needs your support more than ever, while she adjusts to her new circumstances. You cannot change what has happened. It is not what you wanted but often it is needs rather than wants that take precedence. It would be too much to go on living as you were.

Don't feel distressed or guilty that your wife's needs are beyond what you are able to provide. This is easy to say, of course, but harder to do. I hope that the support that you find from members of our community will help you along the way.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,326
0
Kent
I realise that the above is a bit garbled but I just started to type and it all kind of tumbled out.

This is what this Forum is about @Chris##. It is a place where you can open your heart to complete strangers who all have dementia in some form or other in their lives.

Having a partner in a care home is a bit like living two separate lives, one in the home during visits and the other trying to find a way to live alone.

I remember the real life I was living was when visiting my husband in residential care. That was living it as it was with us as long term partners where one was really poorly.

The pretend life was trying to hold my head up at all other times.

Dementia Talking Point was the one place I was able to tell it as it was/is and is probably why I`m still here, eight years after my husband`s death.

Keep posting. You are among those who know.
 

Grable

Registered User
May 19, 2015
176
0
When you have been surviving on adrenalin, trying to keep your loved one safe and happy and to live a 'normal' life in such extraordinary circumstances, it's only natural to feel relieved when those stresses are explained and, importantly, removed. What you are relieved at not having with you is the dementia, not your wife. You've proved this by making sure that you still go to see her!
How lovely that she thinks she's working there, though. At least that means that she feel she belongs and still feels she's doing something useful.
The only people I've known who haven't felt some degree of guilt about installing a family member in a care home are those who had some grudge against that person. Your guilt shows that you care and that you are human, so it's pointless of me to tell you that you have no need to feel guilt. That said, you have no need to feel guilt!
 

Chris##

New member
May 21, 2021
3
0
Thank you all for your comments and advice, it is comforting to know that others care enough to reply
Chris
 

Jale

Registered User
Jul 9, 2018
706
0
Mum has been in her nursing home just over 3 years now and I still feel guilty, even though it was a social worker that told us that we wouldn't be able to cope with her needs and that it was time for her to go into a nursing home. Still feel guilty about it even though mum doesn't know she is in a nursing home (she thinks she is in hospital).
Oddly I feel more guilty on the very few occasions that I have a half reasonable visit with her because I always question myself - was it the right thing to do - my head says yes but my heart says no.

Keep posting, many of us have probably faced what you are going through and those that haven't sadly will probably face it in the future. I have found this place to be a lifesaver.
Take care x
 

Chris##

New member
May 21, 2021
3
0
A further aspect of my dilemma is that my wife does not know what her problem is, should I tell her or should I leave it to the professionals? I know that they can be rather short in there explanation and I think it would come as a great shock if not handled correctly.
Chris
 

canary

Registered User
Feb 25, 2014
18,878
0
South coast
Lots of people with dementia are unable to understand that they have dementia and get very upset or angry at the suggestion.
Mum was told at diagnosis that it was Alzheimers, but never accepted it. I used to talk about her "poor memory" and never mentioned the A or D words.

Does it really matter whether your wife knows, or not, now, @Chris## ?
 

PippaS

Registered User
Jan 3, 2022
29
0
I give Dad bad news once and once only, if at all. He listened to his diagnosis, cried a little while I reassured him he would not have to cope on his own and then never mentioned it again. I told him his brother had died, he processed it and mentioned it one further time then never again. My thought is why would I give him the same upsetting news again? Recently my brother had a heart attack and I decided not to tell Dad as I knew he would be dreadfully upset for a few hours and then forget. I don’t think I would give him any bad news now.
 

mickeyplum

Registered User
Feb 22, 2018
212
0
In the early years of my husband's dementia he would sometimes struggle to remember and then say ' I don't know why, but my memory's shot at.' I would tell him not to worry, that my memory is sometimes bad too and it's all part of getting older that our brains don't work as well as they used to - just like other parts of our body.
Other times I've said it's just a little illness of his brain but nothing to worry about. No mentionof dementia though
 

Dutchman

Registered User
May 26, 2017
1,825
0
74
Devon, Totnes
A further aspect of my dilemma is that my wife does not know what her problem is, should I tell her or should I leave it to the professionals? I know that they can be rather short in there explanation and I think it would come as a great shock if not handled correctly.
Chris
I’ve just come across your post.
Believe me I’ve felt just as you have with the never ending guilt and regrets. My wife’s been in a home for just under 3 years now and there’s not a day goes by when I miss her like hell. Now the good weather’s here I miss our holidays together just sharing easy camping and simple days out just in each other’s company.
I’ve found the only thing that takes the edge of the grief is time and there’s no way round this. I get hit by waves of sadness and highs of being ok. And days go by and you have to manage best you can.
My Bridget never admitted it is vascular dementia and I never said anything….no point. Now she doesn’t understand at that level anyway.
My advice is to leave it to others who can handle it professionally.
Peter
 

Frank24

Registered User
Feb 13, 2018
352
0
I think one of the hardest thing is your relationship changing with the person with dementia. Me and my mum were very close and discussed all but she didn’t want to discuss her Alzheimer’s diagnosis at all. And so we never did. I used to call it memory problem or old age memory loss. When your used to a truthful relationship this can feel underhand and wrong. In reality I think it’s the kindest thing. Especially when someone is very confused in the later stages.