Today we share the fourth 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.  You can find links to the previous posts here.

We interviewed James and he said,

“I was given an NHS book on dementia which I read, but it did not help at all in the day-to-day coping.  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.”

A flicker of Light soon extinguished and seriously bad advice

There were times of extremely perceptive clarity during this period. One particular incident comes to mind. She sat on the edge of her bed as I sat in the chair nearby and she told me that she knew she had been unwell and had said things that she regretted. She wanted me not to be distressed when she was confused and upset and unable to be reasonable and level-headed. She knew that I was doing my best and that she appreciated it. She believed that at some times she was feeling so bad that the illness took over and she was not as coherent and aware of what was going on. I should remember it was the illness talking and that it was not her.  I reassured her that I understood and accepted this, and she smiled and became so cheerful it was like a return to the past and the emergence of her normal personality at last.

Sadly, such times did not last for long.

The next challenge was the arrival of the appointment with the CPN and a letter from the NHS local Psychiatric services unit. This created a huge and damaging, tense situation.  I had no idea who to cope as immediately the interpretation of my mother was that I had decided she was mentally ill and was attempting to undermine her and she got very angry and distressed. I have no idea how I survived the ferocity of the anger and her obvious feelings of betrayal. I think I learned that silence rather than trying to argue, or direct responsibility for the letter to others, was the best way to cope.  It was one of the most unpleasant and emotionally disturbing periods of the illness from my perspective.

The visit from the CPN was not too traumatic.  The tests revealed as the CPN told me that there was obvious dementia and that she believed that my mother would not benefit from the day care that was on offer locally. Why this was I have no idea other than she would not accept it or be happy out of the house. My mother saw the whole business as an examination which she had to ‘pass’ and her anxiety during the process of answering the questions was evident to me, if not to the CPN. My mother managed to correctly answer several of the questions, in my view.

The worst advice of all?

The CPN then gave me the worst advice of all. She told me to ‘keep my mother in reality at all times; I later found this to be very destructive and dangerous. It caused huge upset and difficulty for me daily. Then on later visits the same CPN recanted and decided that this was most unwise. I was very angry.

Telephone calls when I was at work became increasingly awkward and frequent. I left work early to try to bring an element of calm or coherence to the situation. I knew I had to be away from home for work.  I arranged for private care for during my time away. The effect of this was to cause even more distress and upset.  I returned to find my mother, as she had said on the phone, frightened and unwilling to accept that she needed someone to be in the house with her.  There had been either tension, or lack of rapport between them. It appeared that the paid caregiver did not really know how to cope with someone with the level of anxiety and confusion of my mother. A further challenge was emerging.

Join us tomorrow to read what happened next for James and his mother.  You can read the first three blogs here.