Dementia and Me.

I was listening to Outlook on the World Service at 3am today. Me and the World Service are fine friends; Roz Chast, a cartoonist from the New York Times was discussing her graphic novel 'Can't We Talk About Something More Pleasant'. It's about her experiences with her aging parents, her Dad had dementia and her Mum had health problems and was generally belligerent about old age.

It made me think maybe I should write a little about my own experiences.

My Dad died in 2009 aged 80. Although he'd been diagnosed with Prostate Cancer some years earlier, it was under control and he was as fit as a flea until the 6 months prior to his death. He was my Mum's carer since she'd had some TIAs (minor strokes) in 2003. She almost died because the strokes were linked to her having peritonitis and she ended up having an emergency colostomy and was in Intensive Care for about a month. 

I had no idea what 'being my Mum's carer' involved. I thought I did. 

My parents had moved from their house, which my Dad really loved into the town where I live just 2 weeks before he died. It was a warden assisted, so that made things a lot easier. My Mum was devastated by his death and for the next 6 months I spent most of my time with her. My children were still young, but we somehow managed. Social Services provided Carers to help her get up and ready for the day and there was someone who would take her out a couple of times a week. 

As the months turned into the first year post-Dad, things started to go a bit weird. My Mum had been diagnosed with Vascular Dementia as part of her TIAs. The tiny vessels that bled caused those areas of her brain to die and this mainly led to difficulty with balance and timekeeping. If we went out for something to eat, only a minute or two after we ordered, she would be saying 'Gosh, they're taking a really long time!'

It was as though my Mum had lost her anchor in reality. In fact, this analogy is more accurate than you might think. She and my Dad had both left their parents home to set up their own when they got married. They had rarely been apart, especially since retiring so she always had someone to bounce her ideas off. My Dad was a fairly grounded sort of person and when my Mum was getting a little outraged about something or someone he had a way of calming things. He was no angel though - he had his own things to get cross about and then often the roles were reversed.

With my Dad gone, her dementia started to get worse. At the time I believed that she was the victim of unbelievably bad luck. In the last year I have realised that she has been suffering from Delusions, where a person truly believes something has happened. This is different from Hallucinations (which is also related to Dementia) where someone smells/sees/hears something that isn't really there. My Mum has had a few of these too though - like the time she rang us at 8pm to say there was smoke coming out the back of her TV. We raced over to her house (me in my PJs and slippers) to discover nothing wrong with it. There was the 'giant spider as big as my hand' which prevented her from going into her apartment. Again, rush over, nothing there.

Sadly, she forgot that my brother, her 3rd child had died in 1996 when he was 36. She asked why I was talking about him in the past tense. "Are you trying to tell me," she said, "that he's dead?" It was like telling her for the first time all over again.

During 2013 I was at breaking point. Every day there was something. If it wasn't something medical, it might be shopping, clearing up unmentionable mess, dissuading her from getting a cat/dog/hamster, (she would not be able to look after it and I just knew it would fall down to me) organising the Carers, preventing her from setting fire to the flat with her newly found smoking habit (holes in carpet and chairs) and doing endless amounts of laundry. She was developing a hoarding habit. When let loose with a carer who would take her out, she would buy all sorts of inappropriate things. Vast quantities of booze, cigarettes, clothes that were too small for her, tons of food from Sainsbury's. She asked me to set up a food delivery service so that her meals, fully made could be frozen and microwaved when needed. Still she bought fresh veg that went into the fridge and was left to rot until I cleaned the dripping festering mess up. This was particularly hideous when it was meat (for a vegetarian!).

Although I asked the Carers to monitor what she was buying, they are unable to stop her buying stuff that was inappropriate. It was, after all, her choice how to spend her money. It meant that I had to return things that didn't fit her or that she didn't need. Another job to fit into my already busy life (self employed Mum of young children and two Asperger's in the house! And dogs.)

As I said, breaking point happened in the summer of 2013; her lovely social worker encouraged her to have some respite care in a home which was almost at the end of my road. She was very nervous to leave her home, but I helped her pack and got her into the car. I went back to lock up only to find she had got back out of the car and was trying to walk - she uses a frame, which was in the boot. It was a miracle that she hadn't fallen. I was very stressed.

By the time we arrived my blood pressure was through the roof but the staff were lovely and very welcoming. They could see the state I was in so suggested I left them to it and they'd help her settle in.  She had a room upstairs overlooking the garden.

At lunchtime I had a phone call from them. Apparently she had told them that she wanders around at night and therefore they couldn't let her stay in an upstairs room due to safety. They had no other rooms available. Please could I collect her after tea? 

I can remember that feeling now, just writing about it. Doom. Frustration. Beyond the end of my tether. Blood pressure. Anger - she did not wander around at night, she just wanted a ground floor room. I was desperate. I walked up there and spoke to the staff- they could see the state I was in. I must have looked a state - red faced, bulging eyes, turning green.  They said they'd talk to her again later that day and when they did, lo and behold, she no longer wandered at night. They agreed to let her stay for a couple of night to see how she got on and thankfully all was well. 

Social services agreed to pay for a 6 week stay, with the idea that she could then decide whether she wanted to stay. This would mean selling her flat. It was a big decision. However, she was well settled; the grounds were lovely, there were loads of activities to do and the staff were good. I was feeling much happier, able to get on with work and being Mum without too many distractions. The summer was warm and we started to enjoy ourselves.

After a month she started to get agitated again. She accused people of stealing her knitting and even hit another resident on the arm. This was viewed in a very dim light by the staff. She and I had words.On the day that the social worker came to discuss our decision about staying there, my Mum accused another resident of something which needed a full on inquiry. It was nothing that anyone had done to my Mum, more something that she thought she'd witnessed. My Mum said she couldn't stay any longer and wanted to go home.

The long and short of it was - the incident that she thought had not happened and she went home in September with the maximum amount of care that the council could provide, 4 visits a day. It meant a lot of extra work for me as we had to pack up all her belonging and get it back home (including her tv) restart all her blister-pack medication and her food deliveries, and get a new care company to take over. This meant meeting lots of new carers who didn't know her and her needs and I had to oversee things on a day to day basis. I had to get the newspapers restarted and listen to her daily worries and concerns and problems. It was hard work.

She lasted at home for a month. Things got really bad. Really bad.

At the end of September, we found her a place which had a ground floor room, which was run by a couple and not a corporate business, so it was more homely. We did everything we could to make it feel like home and there she has stayed.

It's coming up to a year since she's been there. We had to sell her home to pay for the care fees and that was simply horrible. My Mum, for all her inabilities to understand a lot now, has been terribly upset by the thought that she will never go home. 

At present we are dealing with her grief over my sister. She was hit by a drunk driver and killed instantly in 1974. That's 40 years this November 3rd. When the Consultant visited my Mum at the home, it was all she could talk about - how angry she was that the driver had 'got away with it'. She is full of regret - she asked me how had she messed up her life so terribly? I think that she has never processed it - never learnt to live with it, and now in her final years all the feelings are still unresolved and raw.

I has occurred to me over the years that I should write a book about it. And then I have disposed of that idea because I like to make people smile with my books. People tell me I have a (slightly eccentric) sense of humour and believe me when I say, There is nothing funny about dementia. If you think about the person you once knew and compare it to the one you have now, there is little similarity. The things that I have been through with my Mum are painful and distressing. I don't want to write about the details. Maybe one day I will.

I will leave this post with one incident though that I can now look at and smile about.

A few months after my Dad died, my Mum rang me. She was ranting about something and her words were very slurred. I couldn't really understand her. I was very worried because I had been present when my Dad had his stroke at home and it was alarming similar. I rushed over to her house and when I got there what I found did nothing to allay my fears. I rang for paramedics. They came and checked her over. "She needs to go to hospital", they said, "It's possibly a stroke." 

Oh God, I thought, not another one. Not my Mum too.

I followed her to A&E where she continued to be odd, lopsided and slurring. The staff were very concerned after all, a large percentage of spouses did within 6 months of one another. We awaited blood tests while they ordered a brain scan.

Then the nurse came back with a sheepish look on his face. 
"I - er - not sure how to put this," he said. "We know what's wrong with her."
"What?" I asked, ashen faced.
"Her blood alcohol level is really high."
She was pie-eyed.
Stinko.

Brahms and Liszt.

And I suddenly I was the Mother of an 80 year old teenager.