Sue became an Admiral Nurse after years of personal experience caring for her mother and father. Susan’s mother had Parkinson’s disease and after she sadly passed away her father was diagnosed with Lewy body dementia. Sue’s personal and professional experience with dementia means that the support she provides families comes from the heart.
Looking back to being a carer, I can remember feeling totally baffled about my Dad’s dementia. I don’t remember his diagnosis being explained to me at any time. He experienced visual and tactile hallucinations which did not disturb him, merely intrigued him. He would see people lining up in our living room to look at the pictures on our walls and he was most concerned about the fact that they had not paid an entrance fee to come in! Dad also used to get up in the night and look for the “small children” who used to pinch him whilst he sat in his chair. Many a night was spent with him upending the living room furniture. I would not hear him but get up in the morning to see the mess and sometimes he would be sitting or lying on the floor amongst it. Our relationship suffered, because I didn’t understand what he was experiencing.
One morning I found Dad on the floor again and I was at my wits end. I just sobbed; I didn’t know how to handle it any more. Dad, in a moment of clarity said “I think I should go somewhere where I could be looked after and you won’t have to worry about me so much”. Part of me was happy he felt able to consider a home and part of me was thinking, “don’t you want me to look after you anymore?”
Part of me was happy he felt able to consider a home and part of me was thinking “don’t you want me to look after you anymore?”
Dad moved into a home not far away so it was easy to visit him, well travel-wise at least. Dad didn’t like the home during the first couple of weeks but he soon settled. He actually flourished, blossoming with the attention he got, much more than I could give him- frazzled and desperate as I was. I was able to spend some quality time with him and our relationship changed but for the better.
One thing that I have learnt from personal and professional experience is that when a loved-one moves into a care home, it does not always solve all the problems. The guilt that I felt was indescribable, even though it had partially been at my Dad’s suggestion, I felt empty, sick, ashamed. It took a long time for those feelings to subside, even though I knew that it was the best thing for both of us. This experience is helpful because I know what carers are going through because I have been there myself not because I read it in a book.
Sue is an Admiral Nurse working with Central and North West London NHS Foundation Trust, Sue qualified as a Registered Mental Health Nurse in 2007 and has been an Admiral Nurse for five years.