Living with dementia during lockdown

John O’Doherty is a lived experience advisor, a Dementia United governance board member and an advisor for the Commons Select Committee for Health and Social Care. Read his story about his experience of lockdown

John was also a member of our lived experience steering group and our planning group for our event in June – Living well with Dementia in Greater Manchester: Join us, we need each other. You can read our evaluation report here 

This is John’s personal account of his experience during lockdown.

You can also hear about John’s experience of being involved with Dementia United in this film

My support is doing my work with organisations like Dementia United, not only does it make me feel good that I’m doing something, but I’ve also made a lot of friends since I’ve joined

I live in Greater Manchester which is also home to many members of the Chinese community. In February this year Manchester featured heavily in both local and the national media due to the fact that it is home to one of the biggest celebrations, the Chinese New Year.

The focus wasn’t on the celebrations though, it was on 2 words I had never heard of. Corona Virus and Wuhan province. At the time these words meant nothing to me, however l was not aware how much impact they would later have on not only mine but my entire family’s life. As time progressed, the news relating to Covid 19 became more intense, and more worrying it was now becoming more and more prevalent, it had now spread to Europe, with a vengeance. Lockdown measures were being instated in large swathes of the continent; little did I know that that I would become subject of a UK imposed lockdown which in common with thousands of other people would affect my life dramatically.

Both myself and my wife were considered to be high risk and therefore were made subject of a 12 week shielding programme, which meant we could not leave the house. Because of my dementia I suffer severely with panic attacks when I leave the house, I was soon to learn that those panic attacks became equally as bad when I had to remain in my house due to my enforced lockdown.

Living with a diagnosis of dementia means that you wish to retain as much independence and control of your life as you possibly can. That independence and control has been lost due to my lockdown. I am also fiercely proud and dislike having to ask people to do things that ordinarily I would do myself.

This control has been totally lost. I find myself having to ask my sons to go shopping for me, whilst I am grateful to them and they do it enthusiastically, I find it frustrating having to hand them a list and my debit card details. I no longer have the ability to spontaneously buy items off the shelf, I am a slave to a list. This process also reminds me that my dementia is worsening. I am given a receipt but am unable to add the sums up and struggle even with the help of a calculator.

Whilst I am grateful for this help, I long for the day I can again make my own choices. Whilst I trust my sons implicitly, I feel like I temporarily have  lost control of my finances whilst they have my credit card. Essentially, I feel that my power of attorney is already being applied, even though I still maintain capacity for my financial affairs. Most importantly though this process is a stark reminder that as my dementia progresses and my capacity diminishes, this is how my life will be.

Prior to my shielding I was relativity busy attending meetings, writing, and doing public speaking. I was even working with the Halle orchestra.  Now I do virtually nothing, I am stagnating, hoping tomorrow will be different but deep down knowing I will simply be more of the same. I have tried different things to occupy myself. Watching television didn’t work. After watching 10 minutes of a film or a programme my concentration and poor memory meant I had completely forgotten the plot. The result of this is that it is my wife who switches the television on, I am more than content to leave it switched off. I used to be an avid reader and whilst I had not read for a while, I thought that I would try to read a magazine. Even this simple process was ineffective. By the time I had reached the third paragraph I had forgotten the first two. The fact is I can no longer read a leaflet never mind a magazine or a book.

On a daily basis my self-confidence disappears, in fact I feel that due to my dementia, every day I am disappearing a little bit more. Whilst shielding will protect me from Covid19, it won’t shield me from my dementia. Every aspect of my life has been turned upside down. Prior to the lockdown I maintained a large degree of independence, I made decisions alone and could function effectively. Now that independence is waning I feel vulnerable, depressed and have lost my self-worth. My only solace is that I have been here before at the point of my dementia diagnosis. I drew strength and accepted that diagnosis, moving into a world of optimism, friendship, self-worth and self-respect.

Hopefully that world re-awaits me.