In this sixth blog from James Gilmour about his journey as a carer for his mother with dementia, he describes a phenomenon well known to many carers.  The person with dementia relives the death and departure of loved ones as if she has only just been bereaved and deserted, day after day.

The burden of constant repeated explanation and futile attempts to make sense of the emotion falls in the shoulders of the carer, in this case James, who is himself bereaved and alone. Now read on.

Attempts to divert and failure.

Becoming more aware that alluding to any event in the past was difficult, I decided to try to avoid this at all costs. Gradually, however, it became more and more difficult as the questions asked by my mother indicated that she was struggling to make sense with the fact she was aware of the absence of some people. She would not be put off when I answered her enquiries with vague suggestions, or some attempt to distract. She wanted to have the facts. I began to understand it being like someone trying to put a jigsaw together with a vague vision or understanding of the picture. She knew the ‘pieces’ which might be needed but could not locate them and I was seen as the one who could help her find them.

After trying and abandoning the nurse’s recommended approach of ‘Keeping her in reality’ I had a new challenge. Do I really need her to go through the grief of loss of my father and others when she cannot recall their deaths and, what was important to her, the attendance at their funerals?

Time and again she would go over the fact that she ‘missed’ the funeral, and I had no idea how to respond. To tell her that she was present would not help as it reminded her that her memory was playing tricks on her. To dismiss the enquiry would be similarly destructive as well as that would imply these were not important issues which she desperately needed to resolve.

Impossible to know what was best

When she asked about people who were long dead and whom she was not emotionally attached to, I responded, with a degree of honesty, ‘I have not seen them for a while’. This on many occasions seemed to satisfy. When she imagined that she had seen one person frequently who had died 10 years before, I would listen and express interest, and say I had not encountered them when she had.

It was completely impossible to know what was best, as ensuring that her comfort was my priority. The CPN could give me no advice when I made an appointment and went to visit her in her office, and at that interview she completely turned her advice around and told me not to remind my mother of anything that was past. She did not offer any methodology for addressing how I might distract her from issues or deal with the constant questions.

On reflection, I now see that my mother was trying to make sense of her world without the familiar surroundings and familiar faces. She was totally dependent on me to help her gain some form of ‘control’ or ‘understanding’ of an environment with the absence of those she desired to relate to daily. Any idea of moving her back to her original home was completely impossible. There was no straightforward answer, and I began to realise the day by day looking after on top of working full time (which was the only option I had) could not continue indefinitely.

Despite the daily round dealing with the decline in health and function of my mother and the demands of work, I tried to take time to evaluate what was going on for me. Engagement with others beyond work was zero. I had no time or energy to deal with any interaction or opportunity to escape what had become a grind. Having some physical help with some of the household tasks helped, but my mother refused to have any personal care attended to by anyone. I realised there had to be decisions made that would safeguard her care and also relieve the pressure on me.

You can read James’s previous posts here.   Look in tomorrow for what happened next.