A day in the life of a dementia carer.
I still find it hard to talk about the difficult time we went through but if this helps someone else to overcome their difficulty then it will have been worthwhile.
A little history and background to help you understand. I am 72 years old by the time you read this my wife will be 76. We married in 1973 so have been together for more than 43 years. We both retired in 2004 and moved to Ceredigion in 2007. We slowed down and both had minor health problems as old age took its toll. In September 2013 Margaret fell in our kitchen and broke her upper right arm so I started my role as a carer.
First it was helping her dress and brush her hair but that phase passed as the bone knitted though full mobility in her shoulder was compromised and she got depressed and gradually did less and less round the house as I did more and more. As 2014 progressed I got more and more frustrated as she seemed to forget where she had left her glasses or bag nearly everyday. The final blow was in October 2014 she was summonsed to a routine breast X-ray in the screening trailer parked at Glangwili Hospital. They had to call me through as she could not remember her address nor even the village. That frightened me but it took another two months before I could get her to come to our GP as she was adamant that she hadn’t got a memory problem (as in fact, for her, she hadn’t; she had already forgotten what she used to be like). Eventually she was referred to Bronglais Memory Clinic where, after X-rays and CT scan she was diagnosed with Alzheimer’s Disease in April 2015.
By then I had seen 18 months of gradual loss of function and words until it was becoming sometimes difficult to know exactly what she was trying to say to me. All flowers were called roses and anything in the garden above head height was a tree and anything else was a plant. So a daffodil in March was a “yellow rose” but a climbing pink rose in July was a “pink tree”. He and she were often mixed up which made it hard to tell which of our children or grandchildren were being spoken about.
Margaret gradually drifted away from me so I became either her father or a school friend. More and more she refused to accept I was her husband until in the end she would not stay in the bungalow with me. I then became a prison guard having to lock the front and back doors to stop her running away. Ultimately in January 2016 we as a family had to agree that she went into a care home as I could no longer cope with the day to day difficulties in cooking, cleaning and personal care of the woman who looked like my wife but no longer behaved like her. Now when any of us visit her, she knows our name but seems to have no knowledge of our relationship to her.
So how can I describe a typical day as a carer? Every day is a different challenge. Just to get through without saying a harsh word to the caree is almost a triumph when for the umpteenth time you answer the same question or give up trying to persuade her to have a shower. Coping strategies help but you eventually get ground down by the continual hard graft and lack of sleep. Above all NOTHING prepares you for the day your wife says you are not her husband as she has never been married.
The Alzheimer’s Society were a rock for support and their befriender provided vital support and took Margaret out once a week which at least gave me a chance to have a shower and be “off duty” for an hour.
Social services were no use at all since they could offer no support as Margaret could dress and feed herself. It was no concern of theirs that I had to learn how to cook those meals – she could spoon it into her mouth so that box was ticked. I did get very bitter about that.
Cross Roads and other voluntary organisations were no help because when Margaret said she did not want any help they accepted that rather than listened to my pleas for help. I was even more bitter about that as it was me who would have been paying. Also I got fed up with lots of well meaning young thirty year olds who had obviously never cared for anyone in their life (beyond a baby) trying to share book knowledge with me. A very real example of “those that can DO and those that can’t try and teach”.
The Red Cross were very sympathetic (much talk but no help). Yes they organise a lot of things for carers like relax days or Xmas lunches but lay on no support for the cared for. Hence the carer cannot attend.
Why is there no joined up thinking? My dentist and optician appointments often went begging if I couldn’t get Margaret ready in time or I would arrange for a friend to sit with her and then the dentist would phone to cancel. Thank heavens that I can still drive but her care home is 30 miles away and there is no public transport. When I can no longer drive what happens then.
The dark tone of these thoughts may come as a shock to some. I tried very hard for over two years and it still hurts that I had to admit defeat. Much more little help early on would perhaps have not changed the final outcome but might have made the task less onerous.
Please get in contact if you would like any further advice or guidance on this topic.