I haven’t written a Dementia Diaries post for a little while. My mum’s condition, both physical and mental, has deteriorated considerably and even thinking about it makes me feel sad. Every day there is another problem, today Mum has lost her wedding ring, her engagement ring vanished some time ago. My dad’s entire life now revolves around looking after her and he looks utterly exhausted, not ideal when he had a heart attack only last year. I do some housework for them, mostly hoovering and mopping the kitchen floor but Mum is difficult about it and keeps telling me to stop and go home. When I try to ignore her she pretends to cry and puts her hand to her forehead and says I am making her ill. Am I supposed to leave everything for Dad to do? Dad does now have a lady gardener come every now and then but Mum rudely tells her to go home as well. The gardener has offered to clean for them, I suppose her outside work dries up in the autumn, but I know Mum would be telling her to stop for the whole time. Dad has mountains of laundry to do every single day and I go over and fold it and put it away but I am met with hostility from Mum about this as well. I invariably leave their house feeling guilty about Dad and worried about the way forward. How much longer can this go on for?

Mum now has difficulty walking even short distances and seems to launch herself across their tiny sitting room grabbing onto a chair then a table then another chair until she has made it to the door. She makes little mewing sounds as she does this. She can still pull herself upstairs with the two handrails but I don’t think that will be for long, it is a fall waiting to happen. I have asked my dad to consider turning the under stairs cupboard into a downstairs loo but he doesn’t want to. I am not even sure the space would be big enough. Getting Mum into a car is now a stressful ordeal and she won’t listen to direction. I try to tell her to put her bottom on the seat and bring her legs in but she climbs into the car in a standing position, puts one foot on top of another, and then can’t turn around. If I try to help she shrugs me off. Mum was badly hurt after falling while getting into my car two years ago, her leg took about nine months to heal, I am terrified of this happening again.

Another major setback is that Mum is now unable to get in and out of the bath. Dad now washes her with a flannel as they only have a shower head over the bath. They should have a carer coming in to help with this but the answer to that is a resounding no as well. My mother-in-law, who is in a much better state than my mum but lives alone, has carers in four times a day. They wash her, do her laundry and shopping and prepare simple meals for her. It has made a tremendous difference to her overall health. I am not sure if Dad does not want to spend the money on carers or whether he just dreads Mum being rude to them. Both my parents worked hard for many years and it is ridiculous that they are denying themselves assistance when they most need it.

Dad has a sky-high IQ, he must know that they need help but he doesn’t want to upset Mum. She must be kept happy at all costs, even to his health. As a consequence, he has become something of a servant. If he sits down for a second she asks him to open/close a window or door, if he leaves the room she keeps calling him until he gives up whatever he was trying to achieve. Apparently it is very common for dementia sufferers to become anxious if their main carer is not in sight. I came back from their house this morning feeling hopeless. Mum told Dad off for allowing me to put the carpet sweeper over. She asked the same question at least ten times in half an hour. I don’t know the way forward. Maybe one day the decision will be taken out of our hands. I think Dad is determined to manage, without outside help, for as long as possible.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash