Dementia Support Line
Real stories
How my dementia symptoms progressed during lockdown: John's story
John O Doherty lives with vascular dementia as well as several other serious medical conditions. He was placed on the Government’s shielding list when coronavirus spread and has had to avoid social contact since last March. Over a year on, he looks back at the impact of the pandemic on hm.
Just over a year ago, coronavirus and COVID-19 were words that meant nothing to me. But as news of the virus became more worrying and intense, life for me and my family changed dramatically.
Both myself and my wife were considered to be high risk. As well as dementia, I am living with prostate cancer and also have heart disease and chronic obstructive pulmonary disease (COPD), which affects my lungs.
We were initially made subject of a 12-week shielding programme, which meant we could not leave the house, and we’ve been following social distances rules strictly since. In Bolton, we had only been out of lockdown for about two weeks in the last year, and with my health conditions, I can take few chances.
Because of my dementia, I suffer severely from panic attacks when I leave the house. I have learned that these panic attacks can be equally as bad when I have to remain in my house due to enforced lockdown.
John was diagnosed with vascular dementia in 2016
Losing my independence
Living with a diagnosis of dementia, you want to keep as much independence and control of your life as you possibly can. But those things have been lost due to the lockdown.
I am also fiercely proud and dislike having to ask people to do things that ordinarily I would do. I find myself having to ask my sons to go shopping for me. While 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.
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.
‘I am grateful for this help, but I long for the day I can again make my own choices again.’
While I trust my sons implicitly, I feel like I temporarily have lost control of my finances while 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.
Life under lockdown
Most importantly though, this year has been a stark reminder that as my dementia progresses and my capacity diminishes, this is how my life will be.
While shielding can protect me from COVID-19, it won't shield me from my dementia.
Prior to my shielding, I was relatively busy attending meetings, writing, and doing public speaking. I was even working with the Halle orchestra.
John feels he has lost confidence since lockdown
Now I do virtually nothing, I am stagnating; hoping tomorrow will be different, but deep down knowing it 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. I used to be an avid reader, but the fact is I can no longer read a leaflet never mind a magazine or a book.
New world, new challenges
Every aspect of my life has been turned upside down by coronavirus. 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.
But I’m also fearful of what the future holds. I’ve forgotten what life was like before, and it will be a learning curve to rebuild my confidence. The few times that I’ve met with family over the last year I’ve struggled with this socially because I’m not used to being around people anymore.
When I’ve been to hospital appointments, the use of masks has made it harder for me to understand what’s going on – my hearing’s not as good as it used to be, so I’m having to ask doctors to repeat themselves without being able to read their lips. It’s also harder to judge their body language to see whether I should be worried about something they’re telling me.
‘When I'm outside, I sometimes forget and stand too close to other people.’
I feel exposed and vulnerable. Sometimes I struggle to understand the complicated rules regarding coronavirus. I also impose my own rules because I don’t want to risk my own health.
I also noticed changes at my local supermarket, where arrows were placed to guide people around. This made shopping quite difficult, as the arrows can change as you turn from one aisle to another. This can be profoundly confusing for people with dementia.
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 again.
Stand with John
Stand with us to see those worst hit by the pandemic prioritised in recovery and care, now and indefinitely.
John's story was originally published in July 2020 and was amended in February 2021.