In this fifth blog from James Gilmour about his journey as a carer for his mother with dementia, he describes a phenomenon well known to carers. 

The person with dementia, desperately holding on to their public personality, responds appropriately to visitors, such as the nurse or doctor, and only show their extremes of emotional distress when alone with the carer.  You can read James’s previous posts here. 

Now read on.

Decline and creative interpretation

The result of the CPN visit were regular visits from the GP to see how “the patient” and myself were managing. My mother almost was always charming, funny, polite, and cooperative. The GP visit was a bit of a contrast to the levels of confusion and emotional disturbance which were exhibited at other times.

I think the visit often was much more focused on how I was coping, and he never offered a lot of advice on how the illness was progressing, or what I might expect, other than to warn me it was an extremely tough situation.  He predicted that I could not cope with all that was being demanded and would be demanded long term. While I did not want to admit this, I soon realised he was correct.

The cost of the private care staff was high, and I would not have minded paying the huge bill involved if it had really been helpful and offered the companionship and support my mother required.  I was aware as the months went by that I was not going to be fit to function on a long-term basis. I had an appointment with the CPN who then spoke to the GP, and they recommended a regular visit from a team of various care experts, occupational therapist, physiotherapist and psychiatric social worker and nurses who would help assess what was required and be of some support.

Taking my mother away for a break

Before that was arranged, I took my mother away for a break in a hotel. It was not a success. Suddenly she wanted to know about her mother’s death and my father’s death, and was upset all the time about the fact that she had no recollection of being at their funerals. The almost constant repetition of this when we were away was completely depressing, and I know I may have made things worse by remarking that she ‘did not remember’. This phrase seemed to be ‘the switch’ that set off an anger and resentment against me and her incapacity.  It was very sad to watch.  It was as if there was a huge burden of guilt that her memory did not allow her to recall past events, and she wanted to try to make sense of it all. Yet she knew she lacked the capacity or the skills to undertake this, and then became angry.

One day I returned from work to find her very assertive about her mother and sister being around and her declaration that they must be in the house with her. Both had been dead for a considerable time.  I had no idea where this idea came from and wondered if it was a possible incident of hallucination. Then, when I was in the midst of debating the issue with her, my mother claimed she could prove they were there.

She went upstairs and came down with two pairs of shoes. Both her mother and sister had much bigger feet than hers. She pointed to the shoes. They were obviously much bigger than those she wore. I then remembered that she had damaged her feet some years before and had to buy some larger shoes to accommodate the bandaging and the supports needed to get her active again. Her interpretation of the shoes was a form of logic that I could not discount, that they ‘proved’ her mother and sister were ‘around’.  I learned then not to dismiss assertions made with energy and conviction.

There could be a real and reasonable argument to support the interpretation of the ‘facts’ which she had discovered.  A valuable lesson which I absorbed for future reference.

James learned the hard way what he could have been advised about. Avoiding any argument would have made his life easier. 

Read more tomorrow.