The Dementia Diaries – Chapter Eleven – A Long List of Lasts

When my mum was younger she was such a busy person, she had a variety of different jobs, secretary, school dinner lady (why are they never called lunch ladies?), barmaid and she would sometimes do a little bit of cleaning for neighbours or feed their pets when they were away. There wasn’t a single day of my childhood that we didn’t have a hot meal, maybe not always from scratch, Mr Brains Faggots and Findus crispy pancakes would feature occasionally but most of the time she’d cook something time consuming after being at work all day. We didn’t have a car so she would have to carry the food shopping back, her palms often red from where the plastic bags had been digging in. She would take evening classes in bizarre things like making pictures out of copper and rush off to meet friends, especially my lovely Godmother, Jo, who died a few years ago just after her one hundredth birthday. Also my friend’s mum, R, who herself sadly now has memory problems and stoically dealt with breast cancer in her late eighties, making less fuss than I would over a stubbed toe. My Mum spoke to R on the phone most Sundays until a couple of years ago but now their forty plus year friendship seems to have been erased from both their memories.

Jo, or Josephine, was about twelve years older than my mum and had never married. Her fiancé had been killed during the war. They met when they both worked for a Greek shipping company. Jo lived on the top two floors of a beautiful terraced town house in Pimlico, her brother and his wife lived on the lower floors. Mum, myself and my twin brother would take The Tube into London to visit Jo, sometimes staying for a few days in the summer. I think my Dad must have been on one of his Open University summer course at this point. In the summer we would go to St James’ Park and Kensington Gardens. In the winter we would go and see the Christmas lights and the Selfridges windows. We’d catch the number 24 bus from Victoria. Jo and her sisters, Baba and Pat, would visit us at our little semi in Hornchurch and my mum would get flustered, cleaning madly before they arrived. She would always cook a huge roast. Jo would always wear one of her many navy blue dresses, usually from Peter Jones. Happy days. Jo died in a nursing home during the pandemic, I couldn’t even attend her funeral. She didn’t know who I was when I last visited her but she looked at a picture of Mum and said “that’s my friend”. It was very moving.

This post has rather gone off tangent but what I wanted to write about was how sad it is when the last time for doing something you loved has been and gone and perhaps you haven’t even realised. Mum will never go into London again, will never see her friend Jo again, never see R again, never cook a roast again (although she helps Dad prepare their meal every evening by peeling the vegetables) . She’ll never again come striding into view, weighed down by grocery shopping. But she is still here. Maybe she can only walk a few steps and perhaps she doesn’t really know what is going on but she and Dad still love each other and still follow their little routines. She still sounds happy to hear my voice when I ring. Less happy to see me in person because she doesn’t like me doing their housework. Life has become very small for Mum and therefore for Dad also, but it is still worth living. Find time to do what you love while you can.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash

Photo of Pimlico by Lisa van Vliet on Unsplash

The Dementia Diaries – Chapter Ten – Where do we go from here?

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

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The Dementia Diaries – Chapter Nine – It’s Awkward

Do you come from the sort of family that “talks about things”? I don’t. It sometimes makes things difficult when it comes to dealing with my elderly parents. For example, I have absolutely no idea what sort of funerals they would like. Mum is a Christian and Dad is an atheist, or maybe he is an agnostic, I don’t even know that! Of course I could die before either of them but the chances are it will be up to me and my brother to organise things when they do pass away. I don’t feel able to broach the topic with Dad. He will just say it will upset Mum if she hears. Obviously nobody wants to think about the people they love dying but it happens to all of us and, at almost ninety years old, you’d think Dad would have given it some thought.

My gregarious aunt has already told me she wants a huge “do”, Frank Sinitra’s “My Way” playing, expensive mahogany coffin and speeches galore. She would like a fully-catered reception at the local golf club which is what my uncle had. She has no children and, as I am not her executor I will gladly let somebody else organise all of that. My parents are very quiet people and, at this time of their lives, most of their friends have already died or have dementia. It is horribly sad. My Dad called an old friend who he met when doing National Service and this man, an incredibly talented artist, sounded totally befuddled. His own wife had recently died after a drawn-out decline with dementia, it was the first time that Dad realised that people actually die from this hideously cruel disease. The man’s daughter later sent Dad a lovely card saying that the chap now has dementia and has moved in with her and her family. She invited Dad to get in touch at any time. Poor Dad and his poor friend.

Fortunately, I have only been to a few funerals myself. My grandmother’s was lovely because Dad gave such a beautiful talk about her knowledge of wildflowers. There were only a few of us there but we were all people who really loved her. My uncle’s was a huge production, I gave the eulogy and honestly had to calm myself down when I saw so many people arriving at the crematorium. My Godmother died during Covid, I had to watch her funeral online.

Apparently the average cost of a funeral in the UK is almost £5,000. It’s a lot of money for some people to find. Many people take out funeral plans but these do not always represent good value for money , many things are not included such as the burial plot, flowers, order of service etc. When my grief-stricken aunt went to organise my uncle’s funeral one lady working at an undertakers didn’t even look up from her desk, she just barked at my aunt “prepaid”? My aunt walked out in disgust. There is a government scheme in place for those in hardship , the Funeral Expenses Payment, details are on the Gov.UK website.

Of course as well as the choice of being buried or cremated a person can also donate their body to science. I am not sure I would fancy being the cadaver for a medical student but it seems quite noble I suppose and probably avoids a lot of expense!

I really don’t feel comfortable broaching the topic of funerals with Dad. I don’t know how to bring the subject up and I feel it is really up to him to let me know. I am chatting to a friend about this when she tells me to look at the Age UK website as they have downloadable PDFs dedicated to funeral wishes and other end-of-life planning, the link is below. As for me, I will be quite happy to be put in a cardboard box. Whatever causes my family the least amount of stress and expense is fine with me.

https://www.ageuk.org.uk/information-advice/money-legal/end-of-life-planning/

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash