"survivors guilt"

[kkerr]

I think this is what you would call it - "survivors guilt". My mom went into a care home yesterday - for 2 weeks respite or possibly as a permanent placement. It is not going well. I called this morning to see how things were, - she hasn't slept all night, hasn't eaten, not drinking, had a fall overnight, bit one of the carers and refusing all her medication. I feel like hell (sorry for swearing!)

Now what? What do I do with my time? Every time I think of doing something that I couldn't do before with Mom in the house - I feel an immense rush of guilt and cant manage to do it. Eventually -after walking dogs, cleaning house, laundry (all the normal things I would do on a Saturday with Mom here) I decided to go and do some shopping. I have a bit of money tucked away so thought I could buy myself something nice - retail therapy! Instead, bought new curtains for Moms room at the care home, looked at new furniture for her room and wallpaper. Looked at new nighties... for Mom. Looked at new shoes (her feet are so swollen).... for Mom. I spent 30 minutes looking at scarves for myself..... a simple scarf. Couldn't buy it - don't feel I "deserve" it. How dare I be out "having fun" whilst Mom is scared and angry in a new care home.

Those of you that have been here before - how did you cope? Am beginning to feel I will never get MY life back. Even when Mom is not here, my every thought and most of my actions revolve around her. The guilt is just so overwhelming.

 

[Oxy]

I hope things get easier for you all. Swollen feet-would not buy in regular shops. Cosyf**t do very good swollen feet solutions. Google it and peruse. Only faultis that once you buy anything you get umpteen catalogues per year!!!

 

[marionq]

Kkerr you would give good advice to others but love and compassion for your mother is stopping you giving yourself advice. You have tried home care and care homes and neither makes you both happy because this is the nature of this horrible disease. You cannot do this alone as you are human and not invincible.

Give her time. More than the previous stay. She is obviously a fighter but you need to have a life and as a mother I know passionately that a loving mother would not condemn her precious daughter to this mental torture. You have tried very hard to do the right thing now let others take some of the strain.

 

[sue38]

I think people who can suddenly switch from being a carer to skipping off shopping without a backward glance are pretty rare, and it's totally normal to feel guilty at suddenly having the time and space to please yourself.

It's a gradual process, both for your mum to settle in the care home, and for you to get used to having some me time. Give it time, and you'll find a way to continue to care for your mum in her new setting, and to enjoy getting some of your life back .

 

[kkerr]

Thank you Marion and Sue!
I know it will take time, emotions today just caught me a bit off guard. Last time Mom went into a care home, I was working full time, in fact the day after she went in - I had to work x2 13 hour shifts. Wasn't much time for thinking about other things or feeling sorry for myself, etc - this time, am working part time, nothing on over the weekend, etc - so left with my own thoughts much more. I still have no regrets about taking her out of her last placement, it was a lovely residential home but the staff there were not dementia trained to the degree that Mom is going to require. This new place is a specialist unit - was one of the top 3 dementia providers in Scotland last year - so I know it is a better place for her, as clearly her behaviour is going to be quite demanding. Need to fill my diary a bit more for the next few weeks, as too much at home time is definitely not working for me!!

 

[AlsoConfused]

Walking off any edginess helps me .. I wonder whether it may help you? You need to avoid over-busyness because you've been too "stretched" for too long.

I like "people watching" and it provides enough distraction to keep me amused while still allowing me to carry on musing about whatever's bothering me.

 

[Corriefan]

Hi KKerr. I feel exactly the same. I feel guilty if I do anything for myself and atm feel paralysed and not achieving very much. I think we just need to give ourselves time.

 

[flowerball1]

'Survivors guilt' is so unfair and so unjustified. It hurts so much because you care about your mum, so if you care, that's a good thing isn't it, not something to feel bad about. You have done the best thing in the worst of circumstances, it's hard and it will take time to give yourself permission to do the things other people take for granted. I'm afraid I still shop for mum first rather than myself, but I tell myself that its because I care about her and there is nothing wrong with that then buy something for myself. Try not to think you can only buy things because you 'deserve' or to have to justify your purchase... just buy it, your mum's situation will not change because you don't buy a scarf.

I too found found exercise very useful, just walking around the streets really, but every time I got to thinking too much about the situation I would make myself do something productive like gardening or going for a walk. I have become quite isolated whilst looking after mum at home and now she is in the care home am looking for the courage to make new friends locally and find the confidence to find some work. But guess what, I still want to fit these things around my daily visits to mum in the home. I can't quite let go... yet... and maybe I never will. Perhaps it's my way of dealing with the fact that I care (I'm trying very hard not to use the 'G' word!).

I hope your mom settles soon, take care.

 

[Not so Rosy]

If you have too much guilt you risk even being a survivor.

Most of us do our utmost to care, love and protect the people in our lives with Dementia.

You do have to have a little place in your life for down time.