A new member struggling with guilt

[JustAl]

Hi there,
I found myself on this page when looking for posts from people coping with the guilt that comes with a loved one suffering from dementia and trying to maintain your own life etc.
I was a sole carer for my mum for over a year on a 24/7 basis. My mum was eventually sectioned and taken away from me and I spent the next 16 weeks with her in a locked ward in hospital. I would visit every day. I have now managed to get her placed into a great care home but as her disease is progressing and people are telling me that I need to take more time for myself I have started to take the odd day off here and there.
My mum is pretty far gone and will often ask me if my mum is still alive. It’s really nothing compared to what we have gone through since she was sectioned but I find myself now feeling guilty if I see a friend or if I go for a walk or do something that she can’t freely do herself.
I cry every day, that’s natural I know but I always put on a brave face in front of my mum and I always try and make her smile.
She loves it when I visit, I’m now her husband in her mind and I just go along with whoever she thinks I am but really, my reason for posting is to get other people’s experience with these feelings and to hear their thoughts.
Love to you all.
Al

 

[RJCB]

Hi Al, my Mum was sectioned too and went into a locked Care Home. I have just relocated my Dad to a Care Home. He was living quite independently 5 weeks ago & now is in massive decline. The guilt is terrible. I feel restless and sad. I work as an RN in an Emergency Unit seeing elderly people with falls, dementia. I am currently signed off as I couldn’t cope with my Dad and nurse patients with dementia. Now I feel wracked with guilt over my Dad AND letting my colleagues down but I am so emotionally empty, like my Dad has died but is still sitting there. The guilt is terrible. I have a sister who does nothing...no calls, no visits, not even a Birthday card to him. Look after yourself x

 

[Cat27]

Welcome to DTP @JustAl
After my Dad died, I felt very guilty about being able to do things & go to places. It took me a long time & lots of baby steps to adjust to my new normal.
Please keep posting as you’ll get lots of support here.

 

[Palerider]

I'm not sure what to say really. Guilt affects each person differently. I empathise with you though, its a hard thing to do, that is place someone who you love very much as a parent into the hands of strangers in a place that isn't their home.

I ask myself 'could I have done anymore or anything better?' -No I couldn't and thats not my mums fault or mine, the disease robs us of the opportunites we would normally take for granted with other illnesses. There are lots of different stories on here, but no matter which way you turn you will find guilt. I feel terrible when I leave mum after visiting and I feel terrible every morning when I drive past the road that leads to her CH and even say 'morning mum' as I drive on to work. And sometimes those feelings can come from nowhere, no triggers.

BUT I do know mum is better, more relaxed, less anxious and safe as well as eating and being stimulated by company. She can be herself in the home and not have to try to put an act on, which she was doing most of the time at home with everybody but me. She is warm, well fed, can't wander and although its not perfect she is in a better situation than 2 months ago. With all the will in the world, looking after someone with dementia becomes all consuming and its hard to keep up when working full-time and in my case a lone carer. If there was a way of keeping mum at home I would have taken it, but I also know the guilt I would have felt if I had continued at home and something happened to her when she had to get by alone for over 12 hours on some days (she refused to allow the carers to help).

For me, its accepting the better option of two bad ones, and making the most of what is

 

[Splashing About]

I try and compartmentalise my life. A huge % belongs to my employer, the next chunk is divided between husband, children and parents (this is often emotionally guilt ridden feeling I fail everyone) and then I try and keep time for me. I know I’m lucky to be able to do this (sometimes can’t!) and I do it on the basis that it makes me more patient and kind the rest of the time. I’m also wary of being a martyr so I actively choose ‘me time’ rather than being a resentful visitor.

I do still struggle with guilt though. I think it’s important that you remember that parents want their children to have great fulfilling lives. Do it for her.

 

[RJCB]

I'm not sure what to say really. Guilt affects each person differently. I empathise with you though, its a hard thing to do, that is place someone who you love very much as a parent into the hands of strangers in a place that isn't their home.

I ask myself 'could I have done anymore or anything better?' -No I couldn't and thats not my mums fault or mine, the disease robs us of the opportunites we would normally take for granted with other illnesses. There are lots of different stories on here, but no matter which way you turn you will find guilt. I feel terrible when I leave mum after visiting and I feel terrible every morning when I drive past the road that leads to her CH and even say 'morning mum' as I drive on to work. And sometimes those feelings can come from nowhere, no triggers.

BUT I do know mum is better, more relaxed, less anxious and safe as well as eating and being stimulated by company. She can be herself in the home and not have to try to put an act on, which she was doing most of the time at home with everybody but me. She is warm, well fed, can't wander and although its not perfect she is in a better situation than 2 months ago. With all the will in the world, looking after someone with dementia becomes all consuming and its hard to keep up when working full-time and in my case a lone carer. If there was a way of keeping mum at home I would have taken it, but I also know the guilt I would have felt if I had continued at home and something happened to her when she had to get by alone for over 12 hours on some days (she refused to allow the carers to help).

For me, its accepting the better option of two bad ones, and making the most of what is

Thank you x

 

[RJCB]

I try and compartmentalise my life. A huge % belongs to my employer, the next chunk is divided between husband, children and parents (this is often emotionally guilt ridden feeling I fail everyone) and then I try and keep time for me. I know I’m lucky to be able to do this (sometimes can’t!) and I do it on the basis that it makes me more patient and kind the rest of the time. I’m also wary of being a martyr so I actively choose ‘me time’ rather than being a resentful visitor.

I do still struggle with guilt though. I think it’s important that you remember that parents want their children to have great fulfilling lives. Do it for her.

Thank you x

 

[Splashing About]

Thank you x

@RJCB I took a few weeks off work when my mum had a big deterioration. My boss kindly said “take what you need” which enabled me to go into work when I felt able to. I recovered my equilibrium quite quickly having felt like I may never ever work again

 

[RJCB]

@RJCB I took a few weeks off work when my mum had a big deterioration. My boss kindly said “take what you need” which enabled me to go into work when I felt able to. I recovered my equilibrium quite quickly having felt like I may never ever work again

Thank you for your comment. I was thinking of resigning from my nursing job but I will take this time and think of you returning to work and hopefully I will do the same.

 

[Palerider]

Thank you for your comment. I was thinking of resigning from my nursing job but I will take this time and think of you returning to work and hopefully I will do the same.

I was the same about quiting work, but I didn't and am glad I didn't now. Think carefully about your own needs too

 

[Splashing About]

Have you got a sympathetic boss? Mine was. It made all the difference and work is important for so many reasons. 6 months from now mum will not be here but I will have a career

 

[Splashing About]

Have you got a sympathetic boss? Mine was. It made all the difference and work is important for so many reasons. 6 months from now mum will not be here but I will have a career

that sounds bloody awful