‘Shielding for coronavirus won't protect me from dementia’ – how my symptoms got worse under lockdown

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 mostly stayed at home for the past four months. This has been hugely difficult for John, who explains the impact on his condition and mood.

Back in February, 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 has 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 COPD, which affects my lungs. We 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 have learned that these panic attacks can be equally as bad when I have to remain in my house due to enforced lockdown.

John O Doherty in Beirut

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, lockdown has been a stark reminder that as my dementia progresses and my capacity diminishes, this is how my life will be. While shielding will 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 at Wigan Athletic

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.

I’ve been following the social distancing rules as best as I can. With my health conditions, I can take few chances.

‘Now that I’ve started to go outside again, I sometimes forget and stand too close to other people.’

I’ve also noticed changes at my local supermarket, where arrows have been placed to guide people around. This has 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.

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14 comments

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Thank you for sharing your story John, I found it very moving. Keep those grey cells active however you can.

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I was diagnosed with Alzheimer's about three years ago. Being a clinical psychologist for over 40 years specializing in work with brain injured individuals, I was well aware of the disease and the implications. On a more intimate level, my mother had Alzheimer's and I was responsible for her care so I knew from both a personal and professional perspective what the road ahead was going to be like.
I am still living alone in Houston, except for my adorable dog Jetson, in a wonderful, old bungalow which I remodelled 20 years ago. I love my home and cherish my independence but I have learned to depend on others. I have learned to accept help with appreciation, graciousness and, most importantly, humor.
In a way, this horrific pandemic has oddly been a blessing as there is very little expected of me. I have a wonderful son who lives in Austin and orders my groceries online so I do not even have to go to a store. He drives here to visit once a month which is a source of great joy and comfort and we speak almost daily on the phone. I spend time playing mahjongg with friends on the computer using Zoom which is almost as good as being together in person. As playing this game is what is called an "overlearned" behavior I have not forgotten how to do it and am actually still able to win quite a bit!
My advice to others with this admittedly horrific disease, is to cherish every moment, ask for and gratefully accept help when and even if you don't think you need it, try to maintain a positive attitude attitude and sense of humor and stay safe.

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I think your attitude is excellent as unfortunately although my husband has the diagnosis of dementia in writing he will not accept it and gets very aggressive and angry. As he denies it So often I tend to think I’ve got it wrong

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My husband has taken some time to admit that he has got Dementia (Altzheimers and Vascular) - to himself, me and any of our family, friends or neighbours. When he has become aggressive and argumentative, I have found myself questioning whether I should have ever taken him to the GP in the first place. However, I persevered and despite many distressing occasions, he has now been prescribed Mamentine and for the majority of the day(and night) is calmer and I feel that I was right to push for the recognition of his illness and for a chance to give us both an improved quality of life for as long as the medication offers relief. I hope you also get the support and help you need.

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Thank you Patricia that was very helpful. I wish you well .

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Thank you. May I also say that I have found the utmost support and care from our local Crisis Team (from the Mental Health Unit in North Warwickshire) during recent times of despair , anxiety and outright bewilderment as my husband and I travel the unknown path of Dementia. It took a lot of tears and fears for me to admit that things were getting out of control and that I didn't know how to manage the behavioural changes. I only wish I had contacted them months before and then matters might have been less painfull to us both. It takes a lot of courage to ask for support - I thought I was strong and, being an ex nurse, knew how to manage things. I am so grateful for forums like this and all other means of support now that I know they are out there for us all. Bless everyone who is involved in Dementia care, those with Dementia and those caring.

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I sympathise with your situation, Diane. My advice from experience with my late husband is to try your best not to contradict your husband, change the subject, give him a hug and have a laugh together. And if you have access to support from Alzheimer’s Society, grab it with both hands. All the best to you both.

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Dear Sally, Thank you. I do try and bring some humour into the day. When my husband asks over and over again the same question I say let’s play a game of beating your record. Last night you said that 8 times see if you can do better tonight. Sadly he normally does !!

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You don't have it wrong. Try to avoid arguing with him. Be confident in yourself and seek the support of friends who understand the disease and can be there for you.

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You have a very positive outlook and take my hat off to you on managing this disease. My mum has dementia and does not like it that I have control over her finances she needs support and will not have it so it’s down to me. Lockdown has certainly made her condition worse. Well done to you.

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Thank you Maria. I really appreciated your comments. I wish you and your Mum well

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Being solo with dementia is just another life challenge . One which cannot be overcome despite ones past ability, skills and competence.
So be kind to yourself. Take your time and talk .

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I agree it is a challenge. You cannot "beat" Alzheimer's, just like you can't beat death. I think the issue is how you choose to deal with it most effectively and set up the appropriate support systems as best you can to keep you as safe, calm and comfortable as possible.

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Dear Ellen I’ve just read your story. What a remarkable lady you are. I Have a every admiration for you. What a blessing your son is.

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