Feeling guilty? You aren’t alone. Caring for a loved one with dementia is bound to make you feel guilty at times, says Kate Corr.
The one overriding emotion I experienced throughout my mother’s dementia journey was guilt, shedloads of it, on a daily, sometimes hourly basis. Why didn’t I visit more often? Living more than 300 miles away was a feeble excuse, I should make more effort. Why couldn’t I be more patient when she was rude or aggressive? I should always understand that it was the illness talking, not her. And why did I consent to her going into a care home? It broke her heart to leave her home, I should have tried harder to find an alternative.
Guilt was soon such a familiar companion that I learnt to accommodate it in my life, I grew used to its presence, its accusations that I was simply a selfish daughter, a rubbish carer.
Of course with hindsight and the passage of time, I’m able to see things a little clearer. I know I did the best I could for my mum, and that the nurses and carers who looked after her in her last months of life made a far better job of it than I ever could. But talking to a friend whose father recently passed away reminded me how real and anguished carer guilt can feel. ‘I feel so guilty that I didn’t bring him to live with me,’ she confessed to me. ‘He was very confused but he shouldn’t have died in a nursing home.’
Whilst reassuring her that in reality she had nothing to feel guilty about, that she’d always done everything she could – and more – for her dad, I realised how frequently the word ‘should’ appears in the carer’s vocabulary:
• I should be kinder.
• I should have been nicer to him before he got ill.
• I should try harder.
• I should spend more time with her.
• I should be able to do this without help.
We frequently berate ourselves with comparisons:
• Other people are much better than I am,
• If I were a proper wife/daughter/husband/friend I wouldn’t feel this way.’
• When Mary/June/Ellen was caring for her husband she never complained.
We also harbour guilty secrets that we wouldn’t dare tell a living soul:
• I still enjoy going out with friends even though he can’t come with me.
• I dread visiting her.
• I feel as if I’ve abandoned him.
• Sometimes I really don’t like him.
• It was a relief when she went into residential care.
• Sometimes I wish he were dead.
Most carers, it’s fair to say, are guilty of one thing: underestimating what a difficult job they do. Caring for a loved one with dementia is physically and emotionally gruelling. There are over 700,000 people in the UK caring for a loved one with dementia and almost three quarters (72%) of carers in the UK said they had suffered mental ill health as a result of caring.
Of course carer guilt can occur for many different reasons so it’s important to be honest with yourself about where your guilt is coming from. For example, if it’s connected to unresolved issues from the past, it may help to have professional counselling to help you untangle it.
But generally speaking, most carer guilt is a waste of time and energy – which you probably have precious little of anyway.
So the next time you feel a wave of guilt sweep over you try this:
1. Stop – remind yourself this is a difficult job and you’re doing the best you can.
2. Forgive yourself for not being perfect – nobody is.
3. Call a friend or fellow carer to let off steam.
4. Move on and remember…you aren’t alone.
Feel like you need to let off steam as a carer? Why not join our Facebook group?