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.
Matthew
saysthis is sad
ellen levin
saysI am so thankful for this website. I enjoy reading everyone's comments. It's better than therapy, and I was a therapist for many years. There's nothing like sharing experiences with others in the same boat.
Elizabeth Owen,
saysMy husbandis in an excellent Home with Alzheimer's . He can't walk or stand and is doubly incontinent. He seems unable to understand that I was on the brink of collapse at one point. He is also worried that I have a lover. He needs me to sit and talk about books or look at DVDs together but with Covid this is not possible. He often cries because I'm not with him.
Alex Bevis
saysThank you for sharing your story John, I found it very moving. Keep those grey cells active however you can.
Kathleen Gately
saysMy heart goes out to you John. My husband has dementia and lockdown has nearly finished me off. My husband will not go back to playing golf even though his friends ring and invite him. His confidence seems to have taken a battering. My two sons and myself are doing our best but it is very frustrating. I arranged card games in our house which was brilliant for both of us, but we have to stop this again due to local lockdown. It is so hard for people to have any hope or sense of well-being.
I am lucky that I have great friends and a very good GP. All I can say to you is "this too will pass" (I mean lockdown) and I will pray for you John. May God bless you. Kathleen
ellen levin, phd
saysI 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.
Diane Bloom
saysI 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
Patricia Sprangle
saysMy 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.
Diane Bloom
saysThank you Patricia that was very helpful. I wish you well .
Patricia Sprangle
saysThank 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.
Cathetine
saysHi. I know that feeling of confusion so very well. My husband has vascular dementia and it was a long time before we realised anything was wrong. Then it was much longer before he was past the confusion stage and at times, began to be happy in his ignorance. If only they could be happy all the time! Len was concerned about money all his life ( we struggled a lot) and in his disease he would cry because his pockets were empty so I put coins in his pockets and asked him for occasionally. I also used old cheque books, and would ask him to “sign a cheque so that I could go shopping “
This worked well when he was upset and I think Dementia is the only disease in which deception has a place, using these tactics is a distraction for Len and made him feel better albeit only for a short time
The same thing holds in general life, discussing the problem, it trying to explain does not work because your person cannot understand or sort out their thoughts. With Len asking him to help me, or look after me, which He has done for the last 51 years was the best thing for him
Sadly my lovely man became unable to walk or express himself, and became doubly incontinent and I had to do the hardest thing in my life, and accept a Nursing Home Placement for him in March this year
I lost him on April 1st, Covid? Broken heart? I don’t know. I was with him for the last two days of his life. (I would like to have seen anyone stop me !!). Now I think to the difficult times and the good ones. And yes Ai would go back to both if only I could, but I am glad that he has not got to suffer be frightened or alone any more
So enjoy the good bits. And don’t try to argue, or explain!! It just doesn’t work. Enjoy the good things. Photos. Plenty.
The real heartbreak will follow. Eventually
We are so sorry to hear about the recent loss of your husband - this must be a very difficult time for you.
Please know that you can always call our Dementia Connect support line on 0333 150 3456 for support. More details (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We also have an online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
Wishing you all the best,
Alzheimer's Society blog team
Patricia Sprangle
saysThank you for your comments and God Bless you. I am so sorry to hear that Len has passed away but hope you find strength from the happy memories you shared. Even the sadder ones were part of your lives together and have a value. I have been widowed twice before (age 24 and then age 59) through the evil disease of Cancer and this 3rd marriage in December 2018 was my hope of a new life and contentment in my later years. It is obviously not quite what I imagined or planned and certainly brings the marriage vows to prominence. I hope you stay well and safe as we enter yet another period of unrest with COVID 19.
Sally K
saysI 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.
Diane Bloom
saysDear 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 !!
ellen levin, phd
saysYou 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.
Maria Ball
saysYou 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.
Diane Bloom
saysThank you Maria. I really appreciated your comments. I wish you and your Mum well
Sue
saysHi Maria. I am in the same position as you. I have POA for my mom and am in control of her finances which she does not like as she is a very private person. She did not want strangers ,(carers) in her flat but in the end I was told by my GP to just take charge & do what I thought was best for her and also my own health/sanity. I got carers in which she eventually got used to & now even enjoys seeing the girls as it is a little company for her. I also got a cleaner for her once a week to make things easier for her and me. I think i done the right thing in the end as mother now has a little more company & my mind is put more at rest. Good luck in whatever you decide to do.
Maria Ball
saysHi sue this has really helped me in now making a decision about getting careers in. She has a befriender come in every week for two hours that’s all they will give me. If I lived with my mum I could have 4 hrs but two is good. Glad it’s going well for you. Take care. Maria
Jenny Parsonage
saysBeing 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 .
ellen levin, phd
saysI 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.
Diane Bloom
saysDear 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.
ellen levin
saysHi Diane,
Thanks for your kind words. My son and I just returned from a road trip to visit friends in Telluride, NM. On a long, winding, country road in the dark of night, a pig crossed our path. My son swerved to the opposing lane; luckily no one was coming, but he did hit the pig, or the pig hit us, not sure which! I am here to tell the story, thank heavens. The moral is, cherish every minute, even with Alzheimer's. Take every opportunity to find joy. You never know what will cross your path.
ellen levin
saysThanks Diane for your kind words. Being helpful to people was the purpose of my entire career as a psychologist and I am fortunate that I am still able to do so. One of my patients, a Methodist minister, who had a stroke early in life and was paralyzed on his left side, was unable to safely hold his newborn son. One day, in group therapy, he said, "I can be bitter of I can be better". Those words left an indelible mark on my memory and I try to live by them every day, especially when I get discouraged. I hope sharing those words will help others.