Real stories
Worries about dementia getting worse after the coronavirus lockdown
Tracey, a retired nurse, was diagnosed with early-onset dementia and posterior cortical atrophy (PCA) when she was in her mid-forties. Despite the challenges coronavirus has brought, Tracey is determined to keep her mind and her body active with a variety of activities and hobbies.
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 was 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.
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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.
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.
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
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.
Activity ideas for people living with dementia
Keeping active and purposeful will help fight off boredom and frustration. Here are some activities you can try at home.
Vicky - Programme Partnerships
saysTracey :-) 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
Gillian Andrew
saysTracey - 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.
Jonathan Pitman
saysTracey---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 .
Lorraine A Andrews
saysYou are an inspiration to other people who are locked or self-isolating at home. A 'real life story ' told in a way the reader can understand. Thank you for allowing me (the reader) into your world. Thank you to everyone who is helping to support someone in 'Our' community stay at home and also be independent What you are enabling us it to do is stay safe, mentally and psyically. Thank you for the activity tips. Kind regards LAA
Mary McShane
saysTracy 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.
Marie
saysHi 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
Vicki Davidson
saysHi 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
Tracey Shorthouse
saysHi 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
Pamela carr
saysHi Tracy do you live in lydd on sea Kent xx
Emma
saysI 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.
Marie Raeside
saysI 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
Sally Eldridge
saysBless you Tracey you are inspirational
Stay safe x
Onelia Lopez
saysThank you, Tracey. So many great ideas for all of us to use at this difficult time when we are patiently going stircrazy. 🤗