Part three; Journey with my Mother
Today we share the third of a series of blogs from James Gilmour, describing his journey as a carer for his mother who had dementia during her last years.
In eight episodes, on this website James tells the story from the very beginning of the changes in his mother, to the point when providing care was impossible for him. Here are links to the first and second blogs
We interviewed James and he told us,
“A carer has so little time between to working and the day-to-day care needed to spend any time on gaining knowledge. Tiredness and exhaustion prevent that. Once the illness has started it is too late for you to have time to engage with the resources you need. I was getting more and more tired and confused about what was happening in our home.”
Personality change
A change of personality emerged almost imperceptibly and then very forcefully. My mother was a person whose good nature was legendary; she was filled with good, positive attitudes and kindness and rarely ever angry, or irritable. Now the events of each day seemed to bring on a level of anger I had no idea how to deal with effectively. Every sort of problem resulted in an accusation of fault and blame, mainly of myself, or other innocent parties. I found it impossible to predict what my emerge at any time if there was some slight or minimal incident that could be interpreted as provocative.
The holiday to the Baltic had to be cancelled, but not before I was blamed fiercely for causing this to be impossible ( I am not at all sure I was aware of why it was my fault that it had to be cancelled). My invitations to come with me to different places were refused, and the reasons for the refusal was that I did not really want her to be with me. All of this was extremely upsetting. I began to lie awake at night, often for hours, wondering just how to cope the next day or the next week as the anger seemed to be so powerful.
“Then her fear took over and often when I returned from work she would be in a dreadful state of terror, with a few of her belongings packed in plastic bags in the hall near the front door.”
Then her fear took over and often when I returned from work she would be in a dreadful state of terror, with a few of her belongings packed in plastic bags in the hall near the front door. I had no idea what to do. I found, by accident, that the best way of dealing with this type of incident was to suggest that before she set off out to where she wanted to go (I had no idea where that might have been) we went for a walk.
After about four hundred yards of walking when there would be silence, or odd remarks made by my mother, her whole demeanour would change. Without warning she would start to converse as if nothing at all was wrong and that we were doing what she always did, and having a regular walk and talking about a variety of normal topics. On our return the clothes packed at the front door were ignored and I put things away and carried on as if all was well. I later developed the theory that the walk out in the fresh air stimulated her oxygen supply and the brain became clearer and the confusion and fear receded.
Confessing my incapacity to cope
Weeks went by characterised by incident upon incident, and I found myself getting extremely drained and lacking in energy to deal with the demands of work or the events at home. I am sure that my tiredness and my lack of patience contributed to the worsening of the symptoms endured by my mother. I had no idea of how to distract attention from issues of a distressing nature and what to do when she became increasingly distressed by my inability to understand what was going on.
On several occasions this resulted in me going to visit a GP to talk and confess my incapacity to cope, and while he did his best and listened, there was little real advice or guidance given or suggested coping strategies.
This period of change in the personality made me alive to the fact that in dementia you may lose the person twice. Once when the illness destroys the common bonds of memory and understanding between you and the person with dementia and once when they die after a period of time. I am not sure what is worse to experience.
Read the blog tomorrow to hear about what happened next to James and his mother.
