In a dementia training guide I read: “Looking after someone who has dementia can be very stressful [tell me about it!]. One of the things you may find hardest is living with your feelings about caring. It helps to know what these feelings might be. Most carers experience a variety of emotions. The most common are sadness, guilt, anger and fear. You might expect to be sad when you feel you are slowly losing someone you love. Anger can be more of a shock.
“On the other hand, caring can also be rewarding. For example, some people see it as a chance to give back to a parent the care they were given as a child. People with dementia often seem calm and happy despite the illness.”
Much of this makes sense and describes the roller coaster of emotions I feel, especially the sadness and the guilt. The anger I feel is not directed at the Goldfish and I am patient with him. It’s the step-monster who provokes my rage.
There is also anger that the Goldfish has to have this horrible illness. It seems so grossly unfair. He is such a nice man and has been all his life. He enjoyed his golf and his dominoes in the pub, was very sociable and well-liked by everyone who knows him. I find I’m switching tenses here – I suppose because although he is still with us he is probably considered an ‘absent friend’ by most people who knew/know him. Actually, he has outlived many of his contemporaries and once he might have been proud of that but, sadly, he is no longer able to take pride in his longevity.
Oh, yes, there is guilt – that I didn’t intervene sooner; that I am not his full-time carer. The step-monster is living with him day and night and the nights are not always easy. The Goldfish has clearly been getting up in the night and wandering around the house. This worries me because I know she won’t put the alarm on the doors. She will have locked up (if she remembers: she did leave the keys in the outside lock on the front door recently) and removed the key which means if there is a fire the goldfish won’t be able to get out unless she wakes up and takes charge.
“Caring can be rewarding” – well, it probably is if you are a nurse or doctor but as a daughter who loves her father and wants to spend quality time with him enjoying meaningful conversations, I disagree with this sentiment. Ensuring he has had his laxative is not rewarding, nor is trying to work out what lost word he is searching for with such frustration.
I sort of get what they are saying about wanting the opportunity to give back to a parent what we were given as children but I’m afraid the giving back to the Goldfish is not a patch on the care and love he gave me. He helped me to develop both physically and mentally. From him I learned a love of the countryside, the names of flowers – he used to help me with my school projects, gathering and pressing flowers and teaching me their names. He taught me the importance of fairness and social justice. He taught me so much – I cannot teach him anything.
I can provide meals and ensure he has a good, balanced diet and I can try to ensure he gets appropriate medical help as and when he requires it. But that is not giving back. I’d far rather he did not have dementia and we saw each other less often but when we did meet we could enjoy conversations as before, talking about books we’d read, arguing about politics, putting the world to right.
I feel very suspicious of people who find it rewarding caring for a parent with dementia. I think we can feel a level of satisfaction that we are doing it as well as we can but it certainly is not rewarding.
“Looking after yourself is not selfish – it’s sensible. You need to look after yourself, physically and emotionally, if you want to be able to go on caring.” Yes, well, quite!