Tracey smiling with pictures of flowers in her garden

Life during lockdown: 'I was worried my dementia was getting worse.'

Tracey, a retired nurse, was diagnosed with early-onset dementia and posterior cortical atrophy (PCA) when she was in her mid-forties. Tracey is determined to keep her mind and her body active during the coronavirus pandemic with a variety of activities and hobbies at home.

When the coronavirus lockdown first hit, I was already self-isolating with a nasty chest infection that lasted two weeks. So when everyone says that they have been on lockdown for three weeks, for me, it has been a lot longer. 

'I was worried about how my dementia would cope in being at home all the time.'

On one aspect I prefer to be at home, I thrive much better. I have had no panic attacks, or anxiety attacks since being at home, which I get almost daily if I must travel anywhere or go to meetings. I deal with it, but it's nice not to worry for a change.

In the beginning of staying at home, my memory did falter slightly and I had to add reminders to my Alexa, but I put that down to the fact I was too poorly to concentrate to do anything. But I was a bit worried that my dementia was getting worse.

Staying at home, keeping well

When I was able to get back on my feet, I didn’t want to go out as my immune system is rubbish. I needed to look at ways to keep well and exercise as and when I could.

I am lucky to have a garden. Watering it uses up a few steps as I must get a watering can and fill it up from the sink in the kitchen. I must traipse through three or four times. I have got a water butt but it’s a small one.

I had some vegetable seeds that I bought months ago, so planted the seeds and placed them in my conservatory. They are now little plants.

'In this strange time where things are not easy to get, growing your own is so much more important to do.' 

In the old days, when I was a nurse, I used to use Davina McCall’s workout DVDs in a way to keep fit. She really inspired me. And I have started to do that again as it’s so important to keep my body moving.

Tracey holding her Davina DVD

I use Power Box & Tone for one day, then do a dance one with Darcey Bussell the next day.

It’s important to mix and match so I don’t get bored as I am liable to do.

Enjoying crafts and games

I also like crafts and sewing so I thought of ways to keep my brain active to keep the dementia at bay.

I liked the idea of sock animals, an idea I got from Pinterest. So, I ordered a few kits as I work much better from a pattern than not.

So far, I have made a sock whale and a sock snail. I have a sock monkey left to do.

The patterns I have means I can use odd socks, which is a kind of recycling. I also do latch hook, which is needlework.

Tracey's sock whale and sock snail

I wanted things to do so I wouldn’t be on my phone all the time, which is exhausting. And things that used my brain, which was the most important.

Other things I am doing are word and puzzle games as it’s important for me not to be on a phone or screen all the time. I have also done painting and crosswords.

These things have made me remember a lot more than I was doing when I first got poorly.

'I know not everyone can do what I do, everyone has their own challenges. But doing something is better than nothing.' 

Fighting low moods 

Our dementia advisers are here for you.

I do get low sometimes, not being able to see my family or friends is hard especially as we are close.

Its not being hugged that’s what I miss more. All my friends and family are tactile and as I live alone, hugging my cats isn’t the same.

Meditation helps, as does mindfulness, in those low moments.  

Coronavirus: Activity ideas for people living with dementia

Keeping active and purposeful when staying at home will help fight off boredom and frustration. Here are some activities you can try at home.

Activity ideas

12 comments

Add a comment

Tracey :-) hiya it's Vicky from Programme Partnerships - you are forever an inspiration to me. I absolutely love your sock puppets (and your milk container vase - SO brilliant). Steve showed us them on our Whatsapp Group. Sorry it has taken me so long to get round to fully reading your fab blog - it's been so busy. Looking forward to hearing more about what you have been up to and to seeing you and celebrating the end of lockdown. Big hugs xx

This is helpful
17

Tracey - congratulations on such an amazing article with so many useful hints. We've met several times at meetings about the Young Onset dementia project, as I was one of the AS monitors. Like you, I'm lucky to have a comfortable home and lovely garden, and have also started off seeds in my conservatory which I'll be planting out soon. Keep up the good work and stay safe at home.

This is helpful
12

Tracey---your story is amazing----you sound like a very resilient lady !!!!
Hopefully, this difficult time that we are going through, which is very hard for everybody , will end soon---although it doesn't look very likely--and you can see your family again---Family is particularly important as you know. I have several friends who are suffering from early onset of dementia and I know they all find it very difficult. My late Father suffered from Alscheimers/Vascular Dementia in his nineties---which was difficult for us all. I can't possibly imagine how difficult the "early onset situation " is to deal with. Please accept my sincerest Best wishes and let's hope it won't be too long before you can again see your Family. Very Best wishes .

This is helpful
13

Tracy your an inspiration. I am at home with my husband who has Dementia, I long for conversation and company. My husband is very quiet. After reading your story I have a few ideas to keep us both occupied. Thank you Tracy . I’ll be thinking about you and sending you hugs.

This is helpful
14

Hi Tracey
Thank you for sharing your ideas. Some lovely ideas to keep people busy. I love the sock animals they are great. Take care and stay safe xxx

This is helpful
15

Hi Tracy, I am at the start of Altzheimers myself. It runs in the family. The trouble is I’m not coping knowing what I am in for as I nursed my father and brother through it. I’m trying to exercise but find it hard to be happy. People don’t seem to understand. Any help would be appreciated Tracy. Xx

This is helpful
16

Hi Vicki,
The first thing I would say to you is don't think about your family members who have it or had it. Each journey is different. some of my family had dementia and I nursed patients with it as well. You are at the start, so you need to take steed of what you can do, adapt and keep on living. Yes, its hard work. I have down days, but that's all they are. Each day is different. I exercise when my brain lets me, its exhausting at times. The tiredness never quite leaves you, its a matter of how you deal with it. Word games are good at keeping the dementia at bay. Whatever hobbies you had before you had dementia, keep going with them. You can always get in contact with me through my blog which is mentioned in the article somewhere. Either in the beginning or at the end. Vicki, don't give up that's what I would say xx

This is helpful
15

Hi Tracy do you live in lydd on sea Kent xx

This is helpful
13

I love your sock whale and snail! They’re as cool as hell.

My mum died of Alzheimer’s ten days ago..she got it young and I feel appalling. I am so dreadfully sorry about your diagnosis and yet feel strangely uplifted by your post...that the fact I didn’t have as long with her as I wished, she probably did have some happy times even after her diagnosis. It sounds to be like you are doing great, uplifting things to keep this dreadful thing at bay and I salute you and send you good energy. Take care.

This is helpful
13

I was diagnosed with Alzhimers and Early Onset Dementia it took 3 years I was diagnosed on 4th February 20 I was in a state at and crying for days but I just take each day at a time and take my wee dog Teddy out for longs walks every day rain, hail or snow he would walk for nursery I love him so much I don’t know what I would do without him

This is helpful
8

Bless you Tracey you are inspirational
Stay safe x

This is helpful
14

Thank you, Tracey. So many great ideas for all of us to use at this difficult time when we are patiently going stircrazy. 🤗

This is helpful
16
Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.