COVID-blog #1: Experiences of a person living with dementia

How coronavirus is affecting my life: A personal account

Michael, one of our Experts by Experience tells us a little bit about himself and how social isolation due to the corona virus outbreak is affecting him:
I am living with Posterior Cortical Atrophy (PCA) dementia. I was diagnosed in June 2017, after 16 months off tests and appointments. Because I live on my own, through my own choice now, you see I was a long distance lorry driver for over 30 years, I was in relationships and the last one lived with me for about 13 years, but because I was away all week, and only home for 1 day a week, she decided she’d had enough of only seeing me for 1 day a week, she decided she was going back home to Ireland, but this suited me because of my job. The problem with this is I got used to it. Living on my own, I could watch what I wanted on the TV, go out when I wanted, going for a drink or catch up with mates. But then I lost my driving licence because of the problems I was having, and then I was diagnosed with dementia! I thought this is the time I wish I had listened to her (ex partner) and changed my job. I could have still done the driving but on a job where you would be home every night. I was one of those who loved my job, and just wouldn’t change it.

When I was living on my own with dementia, I realised that I couldn’t do it on my own. I could only carry on with support and help from the memory team and I found that the best way for me to live with dementia was to have routines, this may have been going out to meet people for a chat, going to meetings and groups for dementia, getting involved in dementia research! This gave me a better understanding of dementia.

Then in September 2018, I was diagnosed with a cancerous tumour in the bladder and had surgery to have it removed. In November 2018, I had the camera inspection which showed the tumour had returned and was told it was cancerous, but more aggressive than the last and would have to have it removed again by surgery and then they would start cancer treatments after 6 weeks from the surgery, so in January 2019 I started the treatments.

Then this year 2020, we are all thrown in the total chaos, by a worldwide virus called Coronavirus or COVID-19, and I decided before the lockdown to start getting some food in, but found that I was struggling in the shops. They were in total chaos, people showing total greed and just buying anything and everything on the shelves, and I found that I just couldn’t cope in the shops. It was starting to have an impact on the dementia, and I was having to just go home. I’ve found that I can’t cope with a lot of people. I find it just becomes confusing, so I find that the best way for me to cope is to go home where I feel safe.

On Monday 23 March I receive a text message from the NHS saying that I am a high risk category, and to stay indoors for 12 weeks! The problem I had understanding this, was the government had said anyone who is at high risk would receive a letter. But I hadn’t received a letter so I believed that some people would have to self-isolate for 3 weeks and some for 12 weeks, but we could still go out for essentials, medication and exercise. I thought that was me, but instead of the 3 weeks, I would have to do this for 12 weeks. I was told by my occupational therapist from the memory team, that I can’t leave my home for anything and must stay indoors for the 12 weeks and they were getting in touch with social services to arrange someone to do any shopping that I needed. Everything was going to be done over the phone as she is now working from home, and all my other meeting and appointments were cancelled.

Someone doing my shopping was going to be a problem for me. I don’t carry a lot of money, because I was having problems with counting money so I pay by card, and I just don’t trust anyone with my card, and also I can never remember what’s in my bank account. I always checked my bank account at the cash machine at the bank every day when I went into the town, and when you’re on benefits you have to work on a budget. I then started to panic because my routine had just been thrown straight out the window and I started to think will I be able to cope living on my own? Then on Saturday 28th March, two letters arrived from the NHS. One letter was the one which the government had said it would send. It says that the NHS has identified me as high risk and to stay in my home for the next 12 weeks and that I can’t leave my home for anything and I can’t have any face-to-face contact with anyone for the next 12 weeks, and it has a number to phone if I need food or medication. The other letter was to tell me that they have decided to cancel my next 27 cancer treatments, as the treatments have an impact on my immune system.

I believe that this is going to have an impact on me. Let’s say I find routines for staying in the house, and after 12 weeks when I can go out (mind you the government is now saying it could be 6 months) am I going to want to go out because it’s now become my routine and I won’t want to break the routine that I have become used to, then there is the when the fog descends! This is where I start to get confused easily and I’ve noticed that I am getting this more and more this past week, and then when the fog lifts I feel drained and need to sleep.

When this is all over, I wonder how many people are going to need to be hospitalised because they didn’t receive the care or treatments that they needed now, or even worse, then what happens in say 10-12 months are we going to have to go through this all again because the COVID-19 has come back. These are some of the things I have been thinking about.
It is written by Michael Andrews.