Today we start 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. 

We interviewed James and he told us,

“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 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 would recommend everyone to get the information I did not have. It would have helped me to deal with the whole process.  The Dementia Trust and information on their website helped me understand the issues. That information is essential for anyone now coping with what I had to face with so little awareness of resources and the illness.  It allows you to access as much help as possible.”

Mistaken Assessment: Denial

I really should have noticed far earlier but made excuses all the time. My Mother seemed indestructible. She walked every day from the day when she had a pacemaker fitted to help her heart condition. Her eyesight was now much improved by the cataract operations, and she could now see again to sew and do close work as she normally did. She enjoyed going on holiday, sometimes on a cruise ship to places she longed to see like Rome and Athens, Lisbon, Gibraltar, and Santorini. Twice a year she took a trip The Highlands and sometimes ventured south to her childhood holiday place of Cullercoats or Harrogate.

She lived in my home while I was often staying in a small flat some distance away for work and I returned every weekend, and we went out every Saturday to shop, visit the Garden centre, or nearby places of interest. Most of what I began to observe I dismissed as merely the ordinary and expected signs of her growing older and less able to do as much as she had done in years gone by.

I knew her energy had been depleted by looking after my father in his long last illness. I made sure everything I could imagine to make life simple and easy for her was available.  She was sometimes a little forgetful, but all of us forget things, and some days she immediately engaged with a prompt and recounted the long past event, or family story.  I became a little less oblivious when there seemed a slight change. Others would not have noticed, but she did seem ‘low’ and less bright and good-natured. While she was never bad-tempered, she was slightly less patient and appeared to be irritable about things which never had bothered her previously.

No improvement after several months

I mentioned the change to the GP. He assessed her and thought there was a degree of depression and prescribed a very low dose of an anti-depressant. I knew not to expect miracles or quick results, but there appeared to be no improvement after several months. Again, I went on thinking the changes were the ‘normal’ parts of the ageing process.  While she was not housebound, she was showing signs of not being just as energetic.

I went off to Rome on business and came back to find all well and was welcomed back with enthusiasm and interest in what I had seen and heard.  Then just two weeks after that trip, I had to go away again to the north of Scotland. There was a serious alteration in the phone calls. A degree of anxiety and panic, and a constant need to be reminded of when I would return and what I was doing. There seemed to be a sudden onset of a huge amount of confusion and forgetfulness.

Time for a more expert assessment

On my return again all seemed quite normal and nothing was said about the feelings in my absence, but I mentioned it to the GP not long after. He said it might be the time to have a more expert assessment made of what was going on. I was in denial, thinking it was to be expected of someone over 80 and one who had been so active for so long. I wish I had known more about dementia and its symptoms to really understand what was going on.

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