Guilt is an emotion, that thanks to my Dad’s influence in my upbringing, I had never had much dealing with. He brought me up to have confidence in the decisions I made and that providing one thought carefully about them at the time, there shouldn’t be much to feel bad about latterly. This is not to say that I have never made a bad decision, far from it, but with his positive influence the emotional fallout from them was greatly reduced.
Unfortunately once you start having responsibility for other peoples lives there arises a multitude of conflicts of interest and with them guilt. When you, as a person without dementia, know something is right/safer/a good idea, but the person with dementia is against it, a conflict arises and with that guilt that you may be doing the wrong thing in pushing them e.g. to take medication, particularly when there are serious consequences with either choice.
In ones own life if you make a wrong choice you, as the decision maker, are the person who has to live with that. As a carer for someone with dementia, if you don’t push them to make a right/safe choice, possibly against their wishes, they have to live with the consequences and you have to live with the guilt. Is it right to “over ride” peoples wishes if they still voice an opinion, even when you know the thinking behind them is skewed?
I have power of attorney for both my Mum and my Aunt and trying to do the right thing is a heavy burden to carry. My Aunt, for example, has spent her lifetime refusing all medication. The thinking behind it has always seemed irrational: an unpleasant reaction to a particular medication in her younger days has caused her to refuse all drugs. Latterly I have been faced with the dilemma, when she is ill do I give her medication? or respect her lifelong wish but at the detriment to her health? The guilt either decision carries weighs heavy.
Guilt manifests itself in other aspects of care. Guilt when we take our one week of holiday a year and my Mum goes into a residential home…. “You’re not going to send me away are you?” Guilt feeling excited about having a break then remembering she called 999 on the payphone at the home and told the police she had been put in prison. Guilt (and profound sadness) when we leave Mum with a sitter and go out out for a few hours somewhere and she says “I used to like doing that.”
I’m not sure there is an way to assuage the guilt. I try to make the best decisions both for my Mum and my Auntie, but balancing those with their wishes, and in some cases my own feelings and the best interests of my husband and children is never going to be clear cut. Ultimately there will always be a conflict of interests and ultimately I, as the carer, am the person to carry that burden of guilt.