We were given a challenge Kirsty and I, should we chose to accept it. The wonderful Lee, the lady responsible for Dementia Challengers asked us if we would write an article about guilt. Now I have no issues about guilt, I feel it all the time and from "knowing" Kirsty, we are both in the same boat so we took on the challenge before it detonated within the next ten seconds.
Lee has our article on her fabulous website Dementia Challengers. The merged version is there for you to all read, but Kirsty and I thought you might like to see the original versions that we both wrote, and worked from. Guilt is something that all of us feel, but here are our versions for you to have a look at...
Guilt according to Constantly Trying (that would be me)
As a carer, guilt is the millstone around my neck. I carry it around with me everywhere, occasionally resentment balancing on it.
I feel guilty for absolutely everything. Guilt for noticing he's declining. Guilt for worrying about him. Guilt for feeling like I'm not doing enough. Guilt for using "mummy" skills on him when they should be for our three girls. Guilt for feeling lonely and isolated. Guilt for saying "no" all the time. Guilt for having no money. Guilt for wondering what the future will bring. Guilt for not working. Guilt for resenting him for getting ill. Guilt for resenting this illness called Dementia, and guilt for allowing myself to wallow in self pity from time to time and guilt for Dementia robbing our children of their childhood.
As a carer I do all that I can. I stretch myself to cover any aspect and I know it will get worse and then guilt rears it's ugly head in case I won't be enough. In the future I know that I will have to accept help (or even ask for it) and I know I'll be insufficient and there's more guilt.
It's a lonely place being a carer, and so many emotions rattle around in my head, but the one that takes the wind out of my sails is definitely guilt.
Guilt according to Kirsty (that would be Kirsty)
This is something that I covered in my blog, but it's not something you see talked about often. I suppose that despite all feeling guilty for one thing and another, we still feel ashamed of the things we feel guilty for.
I feel guilty whenever I leave Nan to meet up with friends, the what if's circle round. What if Nan falls? Or lets someone in? Or starts a fire?
And this in turn has led me to feel guilty about neglecting friends. And led to reluctance in me getting a job. Thankfully my friends have been understanding and I have a job where I can work hours around Nan. I've come to realise if she's going to fall, she will fall whether I am there or not. Hard as it is not to immediately shoulder the blame when something goes wrong, I cannot prevent everything. And going out will do me good, and make me a better caregiver at the end of the day.
I also feel guilty when leaving Nan with professional caregivers as I just don't think they can do it as well as me, they don't know her, not really. I feel so guilty if she is on her own as she must feel so bored and lonely.
I feel guilty when I get irritated at dementia Nan's behaviours and repetitions, I know that it's part of the illness and I think that knowing that means I should be able to rise above it.
I dread the day I won't be able to cope any more because despite what everyone says I will still feel as though I am letting Nan down.
I feel guilty about the things I might be missing, or have given up/will give up for Nan. I shouldn't regret losing these things due to all the things I've gained with Nan, and it was my decision to live this path.
But it's important to remember, and have people remind you, that just getting through a week of caring for a loved one is amazing let alone the months/years that some of us undertake. Suprisingly not everyone would. We are doing all we can, and even when it gets too much and we have to consider outside help, it is not a failure or anything to feel guilty about. We tried, it was trying, no one will judge you for taking that step away from the path.
*What neither of us, Kirsty or I, had realised is that Lee (whilst wanting an article about guilt) set us our challenge to bring us together. Kirsty and I follow each other on twitter, and natter through the direct messages, but Lee's plan was to get us talking, and that's just what it did. Lee, you are a master and we should all bow before you :o). I now have visions of you sitting in the dark on your big leather swingy chair, stroking a cat working on your next master plan ;o) xx
Kirsty cares for her gran and CTrying cares for her I husband who has early onset dementia, as well as for her three young children. Both these young women also write blogs where they share their experiences. I asked them to collaborate in writing this article.