Part two. Journey with my mother

Today we share the second 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, which we will publish 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 read the first blog here.

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, such as sorting out a power of attorney. I was getting more and more tired and confused about what was happening in our home.”

Second Thoughts

As time went on, I became more and more observant. There was a sense of my mother becoming nervous and insecure. While she ventured out to walk each day, a little up and down the road, she wanted to be in sight of the house and not far away from it.

She became, for her, strangely ‘demanding’ in that she expected at weekends to be taken hither and yon, and not left alone at any time. She got upset with phone calls at the weekend to me, often about work, and even began to assert that I was discussing her with others. This thought really upset her and she was often tearful. It took quite a time to calm her down and get our relationship on an even keel.

Her active life as a charity worker had been cut short by the demands of looking after my father for so long. She had moved to live with me in order to cope with him as he declined and became a huge responsibility physically and emotionally. She had recovered to some extent but had not returned to local charity work. I had asked the GP about this, and he told me her general fitness and age would not really permit her to work in a charity shop or get involved as it would tax her system which had been under serious demands for so long.   I am not disputing this, but company and engagement in some activities with human contact beyond myself may have helped keep her active and able to have a better quality of life.

Imagining there were people in the back garden at night time

As we waited for an assessment from the Community Psychiatric Nurse, a further development emerged. She started to imagine there were people in the back garden at night time and that she was not safe in the house alone.   The GP came and did try to talk to her, and she did, in the light of day, admit it was her imagination. As a reassurance, I had security lights installed to go on automatically which would frighten anyone away.  The GP informed me that he was now expecting her to show other signs of the onset of dementia.

My professional work was very demanding, and I began to feel overwhelmed. There were various small incidents as we waited for the CPN. I stayed at home with my mother and travelled each day to work instead of staying over in my flat in the city. I found my tiredness overwhelming, and my concentration often wandered if I sat down at work, and it was quiet.

“It was so bewildering, and I found it so difficult. I tried to recount it to the GP who found it apparently just as bizarre and confusing.”

— James Gilmour

She began to reverse the clock (something I later discovered was not unusual) and she woke me regularly me at 3.15 am upset that I was late for work. It took me quite a while too sort this out, as day became night at times. Persuading her to get to bed upstairs was a common issue at especially at weekends, for some particular reason.

Then she exhibited the most alarming and distressing of behaviours. She would talk to me as if I was one of her siblings (all of whom were long dead). I would leave the room, return and then she would talk to me about the imagined sibling’s behaviour or what had been said and had happened. It was so bewildering, and I found it so difficult. I tried to recount it to the GP who found it apparently just as bizarre and confusing.  I had no idea what to do. Was this to be treated as something normal and acceptable? Or was I to dismiss it as something unimportant and irrelevant? How I wish I had known more.

Read the blog tomorrow to hear about what happened next to James and his mother.