There have been a few difficulties this week.
On Saturday, I received an email from one of my brothers informing me that Mum had been taken to hospital following a fall at home. She had been found unconscious in the kitchen, and we have no way of telling how long she had been there. As a result of the fall, she had a lung infection that later developed into pneumonia.
That brief summary is and was enough to generate a maelstrom of thoughts, emotions and actions. I lost sleep that night, with visions of my poor and dear Mum lying on the floor of her kitchen alone. Even now, writing that, I get hugely upset.
I have no doubt that every and any family dealing with a parent with dementia goes through much the same. The advice tends to be that the parent should remain in their own home for as long as possible, as they are surrounded by familiar things that help their routine. Change that routine at any time, as we have learned from experience, is to cause huge confusion that can have an impact for days, if not weeks. But when the parent is living alone, how safe is it for them to be at home alone? We were very lucky in that we found two carers who live locally and who were able to ensure that Mum was fed and cared for, for a part of every day, but as time wore on, we knew that this was probably not enough. As I am sure many children of parents with dementia do, they wait for the day when they see a deterioration to the extent that the parent is no longer safe. Well, that day came for us, in no uncertain terms, this past weekend.
I felt helpless, frustrated and hugely distressed. Should I go back the UK immediately? But what use could I be once there? I could certainly visit Mum in hospital, but for how long and to what end? In hospital, the process was to tackle the infection with antibiotics and then prepare Mum for a return to a life outside hospital. I could have been most useful being with the children, but then daily life goes on and they still have to go to work. The first 24 hours was the most difficult, as it was very difficult to gauge how significantly ill Mum was. Emails from brothers were not positive, but then an 88 year old who has had a fall, and is delirious from infection is a very difficult sight, and emotions run high. I was ready to jump on a flight, as long as I could help. I desperately wanted to see Mum and reassure her that everything would be fine, but for those first two days she was confused and was really not aware of who anyone was around her. That sounds rather like an excuse, but it is a decision that has to be made.
Fed by information from my brothers, sister-in-law and the pretty scant details from the hospital, it became clear that Mum was responding to treatment; she is recovering, and the children went down to see her yesterday. I had warned them that it could be distressing, and it was. Mum had had a bad night, with delirious outbursts, and as a consequence, she slept through most of that following day.
My dear Mum has aged so rapidly in recent years, aided by the ravaging effects of dementia, a cruel and life-draining condition. If Mum recognises any of us, we are lucky; she is trapped in some pernicious re-enactment of Groundhog Day, where every day has to be the same, and people come and go without much relevance. They are merely extras in an ever-diminishing play.
My biggest debate within myself, for some years, has been whether or not to live permanently with my Mum who, for so many years, gave everything for her three children. That debate consists of two opposing arguments: give up what life I had to be with my Mum when she most needs that level of support or carry on living my own life with the burden of guilt and distress that came with that decision. There are no two ways about it: supporting a parent with dementia if a full-time commitment.
We have reached the stage where Mum is no longer safe to be in her own home without round the clock care, and we face new decisions. Do we find a suitable care home or do we try and find a live-in specialist who can provide Mum with the best possible quality of life in familiar surroundings. I don’t know the answer yet.
