What’s it like to care for someone during COVID-19?

The coronavirus outbreak is particularly worrying for carers and comes with its unique set of challenges. Leah Payne shares her experience of caring for someone with dementia.
Older woman wearing glasses

Leah, 43, and her family, have been caring for their mum, Lucille aged 85, for five years. This came after Lucille, a retired nurse, was diagnosed with vascular dementia five years ago. Leah tells us about the challenges she’s faced, particularly during the current pandemic.

“It has its challenges – you feel like you’ve lost someone before they’ve gone”

Further to the worry of her mother’s condition, the pandemic left Leah and her family worrying about how they were going to support her.

There was the anxiety of thinking - what does lockdown mean for us in terms of caring?

 “We do the shopping, cooking, cleaning, collect medicine, help with bathing, brush her teeth, and help her go to the toilet. We take mum to health appointments and we’re there to answer the door. Ultimately, we’re there to keep her safe.

We’re not getting any external support. We have tried but we have been told that as a family we are doing a great job – I feel like we are victims of our own success. We have thought about getting carers, but mum doesn’t settle with new people in the house.”

Leah thought about her mum moving in with herself and husband Stephen, a furloughed plumber – but with one upstairs toilet and steep stairs, it didn’t seem like the best and safest option.

We breathed a sigh of relief when the government said you could leave the house to do caring duties.

Where can I get help as a carer?

If you are a carer, or have taken on caring duties during the pandemic, there are a few things you can do to look after yourself, and the person you are caring for.

Carers UK

Read the guidance from Carers UK and find out what the Government advice about COVID-19 means for you and your loved ones. There's a range of tips, resources, and support that you can take advantage of.

NHS

Speak to someone about the care and support you and your loved ones need. The NHS has a list of telephone helplines and forums from different services and charities.

Talk to your local Healthwatch

Your local Healthwatch can help signpost you to local organisations and support services.

Coronavirus

If you are worried that you or someone you look after may be at high risk from coronavirus, NHS 111 can offer direct guidance through their online coronavirus helpline. Call 111 if your (or their) symptoms become severe and let them know you are a carer.

Explaining coronavirus

“Mum’s comprehension about Coronavirus comes and goes. We remind her she can’t go out and explain to her that there is a nasty bug going all around the world, and that’s why we can’t go out. Fortunately, she understands this.”

“We keep mum company and do lots of fun activities such as sewing, jigsaw puzzles, word searches, and knitting. Mom loves to sing – we put songs on, especially Elvis and gospel songs, and encourage mom to get out in her lovely garden. We look at old photos together – especially pictures from her nursing days.”

Are you struggling to explain coronavirus to your loved one?

Read the Alzheimer’s Society frequently asked questions, including ‘How can I stop someone with dementia from leaving our house?’ and ‘The person I care for is in denial about coronavirus. What can I do?’.

Read here.

Tips for lockdown measures  

“We’ve been disciplined in following government guidance. We keep mum’s documents on us just in case we’re stopped by police. We have mum’s dementia diagnosis letter on our phones to show that we’re carers, and mum’s shielding letter from the doctors that says she has to stay inside for 12 weeks.”

The Government has guidance for those who provide unpaid care to friends or family.

Carers UK also have information for further support for you and those you care for during this time.

Tell us about your experience of care

Has your care been disrupted by COVID-19 and its impact on health and social care services? Whether it’s good or bad, we want to hear from you.

It only takes five minutes and your feedback can help NHS and social care services understand the steps they can take to improve care for you and your loved ones.

Tell us your experience 

Care for yourself, as well as the person you care for

“Maintaining mental health is essential. It can be tough at times and mum can get quite upset so it’s difficult to manage that.

“It’s very hard being a carer for someone with dementia, you go through a lot of emotions - guilt, frustration, anger, loss, the list feels never ending. You’re grieving for the person before they’ve even gone.

“Caring, while being rewarding, takes its toll in lots of different ways. It’s had a massive impact on all our lives. I used to go to the gym and train several times a week, the time spent alone at the gym was my saving grace. I can no longer do this, and I miss it so much, but I do make sure I get out once a day for exercise – it’s essential.”

 “There are other things you can do to help look after yourself, like reading and eating well. I’ve been keeping myself busy by doing an online course too.”

Caring for someone with dementia

Dementia UK

Dementia UK has information for families looking after someone with dementia during the coronavirus pandemic. This includes frequently asked questions, information and advice, and a helpline.

Alzheimer’s Society

Alzheimer’s Society have information for people affected by dementia, including supporting people to live at home.

Share your experience of NHS and social care services

We want to know more about the care you and your loved ones have received during the pandemic - both the good and the bad. Help your local NHS and social care services understand issues that are affecting care for you or a loved one in our short survey.

Tell us your experience