Dementia

Back in the middle of summer, I visited J, my sister-in-law (Greg's sister) in the Midlands. I haven't seen her since August 2024 and do try to visit when I can to catch up on family news, see J's  daughter and now 22-month old granddaughter, as well as J's 79-year-old partner M. M sadly has dementia and for the last year or so has been living in a care home. 

His decline was gradual, first diagnosed about 6 years ago. At first, it was just a case of some forgetfulness, but gradually worsened. It is a horrible disease for both the patient and their family. J is very practical and had realised a few years in advance that living in a bungalow with washable floors would be much easier than their big house with carpets. The bungalow is situated in a small hamlet in the middle of nowhere comprising 11 houses. No shop and no street lights, but does boast a very small postbox inserted into a wall. Their neighbour opposite is a farmer who owns the surrounding fields.

M had run his own business, but gradually that was wound up and all paperwork put into their attic. He gradually became incapable of driving his van and that was given up and his license rescinded. He would forget what he had eaten 5 minutes ago and would watch a whole football match on TV and then an hour later deny he had ever seen the game. He would wander out into the fields with his beloved Border Collie dog and forget how to get home again.  Very often the farmer opposite would find him, particularly when the dog came home without him. When the dog was finally put down because of cancer, M did not really register this and some six months later was asking where the dog was.

J had often considered putting a tracker on M to help her find him if he wandered off, but he was stubborn and refused to wear one and changed his coats so often, it was difficult for J to judge what he would be wearing to secrete it on him. He would spend his day out in the country lane nearby obsessed with picking up leaves or pulling up dandelions, even though it was not his property. He would come even more alive in the middle of the night, wanting to access his business papers and nothing would quieten him until he climbed up into the attic. J was getting next to no sleep yet having to function during the day to the care of feeding him, clothing him and watching over him.

In the winter of 2023/24 he managed to get out of the house at 3am in the middle of the night. It was cold and snowing and, as J had locked the front door and hidden the key,  he had managed to get out at the back through the French doors of the lounge and round the side of the house. With no street lights he had become even more confused and didn't know where he was, so thankfully knocked on the first front door he came to, namely their own front door. J was wakened to someone pounding on the door to find him standing there in pyjamas and slippers in the snow, asking if she knew where he was!! 

It was at that point that J realised it was not safe for him to be at home any more and also she was exhausted from the constant worry and sleepless nights she was getting, as he paced the bungalow day and night. With much deliberation and guilt, and on the advice of the Admiral nurses who are experts on dementia, she put him into a care home last year. It has not been easy and her guilt exists to this day as she feels she has let him down. But, as one professional said, he was no longer a one-person job and she could not have continued without her own health failing. She is, after all, over 70 herself.

His fascination (or is it impatience) with things on the ceiling that blink (like smoke detectors or fire alarms) has seen him have several narrow escapes, as he tries to dismantle them. According to the care home staff, he once moved an armchair from the corridor, put it on his bed and then attempted to climb onto the bed and then the wobbly armchair to dismantle the smoke alarm above his bed. He has climbed onto the toilet seat to do the same in his ensuite bathroom and again in the communal dining room where he stood on a dining chair in front of a ceiling-to-floor window two floors up from the ground. The staff found him just in time as the chair started to topple. Falling through a plate glass window two storeys up doesn't bear thinking about.

When J visits him (four times a week) he barely recognises her now and treats her as if she is one of the residents. He will chat to her for a few minutes and then wander off to sit with someone else. She has even seen him more than once holding hands with a female resident he has become friendly with. He, like the others, wanders into other's rooms and helps himself to their clothes. Once a visitor's coat when missing from where he had left it and uproar was caused as they tried to find it, as it had his car keys in it and the man couldnt leave without it. The staff found M in his room wearing it and retrieved the coat and keys, so the visitor could go on their way. Once hungry, M forced open a locked cupboard in the communal kitchen and helped himself to a dishwasher tablet to eat. Fortunately a nurse came running in time before he had swallowed it. There are so many episodes I could mention that would make a good comedy series if it weren't such a serious topic.

We have no idea how much longer this disease will take to progress to its final stage. It is a strain on J and the immediate family as the money to pay for the care home is astronomical and eating at any savings, not to mention the sheer ignorance of how long this will go on for. He is effectively lost as her partner but still alive inside what resembles a now worn-out body. I have read that dementia is the biggest killer these days and has overtaken cancer or heart disease. It is quite frightening to see the demise of a man who was once a successful businessman and had all his faculties. It is quite frightening to think that it could, on the law of averages, happen to those close to us or even us.