When my mother started our usual three quarter hour phone call this morning announcing she had had a bad night, I was in dread of the rest of the conversation. However, she praised the young carer who had been kind when called twice in the night. I assured her it was right to call and that’s what they were there for. We talked of other things, lucidly, as she is at her best in the morning, even after a bad night. We got on to her sister, who will be a hundred next month, has just moved into a care home and, much to the astonishment of all who know her, is enjoying the experience. I offered to move my mother into a nursing home if she wishes to do so. Then, incredibly, she said that staying in her own home had been the best choice for her and that she liked nearly all the carers and was glad of the care.
I think, in terms of accolades, for someone who has never been happy with anything in her life and whose hobby was running shop assistants the length of her tongue, this is quite extraordinary. I’m writing it here and now so I can remind myself when things return to normal, which is to say worse, that she did actually say that.
One of the many aspects of responsibility that can plague anyone with charge over another adult life, is whether you are doing the thing that the caree would do if given a free choice of all the possibilities. My mother and I did discuss this at length. It does seem like another life and another universe when we were interviewing care agencies at my insistence round about Christmas 2012. I realised early on that I was not going to be able to do it all myself without help but my mother, unaware of the gravity of her situation, was insistent that she didn’t need strangers in her home to look after her as though she was mentally deficient. A year after this pronouncement I secured the abolition of council tax charges for her on exactly this ground.
Facing the situation and getting to grips with the reality, I believe to be the key to negotiating the minefield that is dementia with as few casualties as possible. It is precisely the reason that I have written this blog. I do not know how often or how soon my cousins broached the subject to my aunt but I certainly started early with my mother. I mentioned the possibility that there was help, then said nothing for a week or so, then I mentioned it again. Some weeks later I produced a leaflet or two and left them lying around. When the first care agency crashed and burned on the first visit I had time to leave things in abeyance for many weeks before suggesting we had another look. At every stage of the process I took things at my mother’s pace.
The reason, of course, is perfectly understandable. If you can empathically put yourself in the place of the caree, to admit that you need help, is to admit that you are somehow failing mentally. Who would willingly do such a thing? Even when a brain scan reveals big holes and a brain specialist has told you you are demented, it is a natural human response for any adult, used to living their whole adult life without assistance, and, apparently outwardly unchanged, to disbelieve the medical evidence.
So, from a point of view of compassion I sidled up to it. Each time I returned home, during the year that I mostly lived with my mother, I counted it a victory if I had managed to mention once how matters stood.
Nevertheless I did not anticipate the acceptance that was evidenced this morning. I doubt my mother will ever say that I have done the right thing because I have lived my life in the wrong. According to my mother I have been the wrong height, weight and shape always. I have married the wrong person, who definitely is not aristocracy, which is a huge disappointment, when I went to such an expensive school. I don’t give dinner parties and appear to be happier when covered in mud than I am in twinset and pearls. I have got it all wrong.
But I did get the care of my demented mother right and she did say so this morning. As she gets frailer, angrier and more demented, I shall hang on to that.
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JaneLaverick.com – occasional correctitude.