In this eighth and final post from James Gilmour about being a carer for his mother with dementia, he describes the final difficult stages of caring at home. 

This story will resonate with those of us who have ever had to make one of the most emotionally draining and expensive decisions of our lives. Now read on.

Decision time

I could have taken the option of giving up working altogether and become a full-time carer at home. It had all sorts of advantages, not least the cessation of travelling and the constant anxiety at work not knowing what may or may not happen in my absence. I think I knew deep down or unconsciously this was not an option that would be sustainable over the long term financially, physically, emotionally, or psychologically.

As a part of the process of deliberation I took my mother with me to the flat near work and settled her there and hoped to see that my returning at lunch time and being there more than was possible when travelling a distance might be a suitable alternative. I soon discovered otherwise.

One day when I had to be away the whole day, I telephoned several times with no answer. I had a premonition that something was wrong and got back to the flat as soon as I was able. I found my mother in a state of emotion and depression.

I began to piece together the events of the day. I had left her ready for the day with her newspaper and television on after breakfast. She then told me that she had decided she hated the flat, and wanted to go out, so off she had gone, without keys or much knowledge of the area for a walk. How she got back and how she got in through the secure entrance door I have no idea. Someone must have let her in, and she left the flat unlocked as she had no idea where the spare keys were. This made for serious alarm, and I took her back to our home the next day.

You never told me

The repeated phrase, ‘You never told me’, would ring in my ears as we had appointments with various medical people, or a specialist, even before the obvious development of the dementia. I became very aware that the feelings arising from being accused unjustly of deceiving her was causing me to be utterly mentally depleted. I knew I was unable to sustain the level of patience and care required.

I had a regular appointment with the GP and after the incident of ‘going walkabout’ in a strange place, I told him of my fears and concerns. He arranged respite care and told me to book a short holiday away and not visit every day while she was in care. He then indicated that he believed that I had come to a point where I realised that I could no longer cope at home myself and full-time residential care was the only realistic option.

I reluctantly agreed. I had symptoms of stress and a previous liver problem re-emerged which he said was a direct result from the impact of what was going on in my life. The body was telling me I had to stop.  He then offered, and I readily accepted the offer, to come and talk to my mother about going into respite care and thereby protecting my health. This he did and her immediate reaction was one of concern for me and acceptance that I needed a holiday.

He arranged that a member of the assessment team would come and collect my mother and take her to the residential care home run by the local Council in a town nearby and I should go away for a break. Then, on my return I should start looking for a nursing home which would be suitable for her needs and personality. This was excellent advice, and I took additional holiday days to undertake the task.

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 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 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.”

You can read James’s previous posts here.