John’s wife, Lesley, is living with dementia in a care home. Because of coronavirus, John has not been able to visit Lesley every day as he would usually do. Despite the Government’s new guidance on care home visits, John explains how more needs to be done to make sure care home visits work for people living with dementia and their families.
My wife, Lesley, and I have been married for 45 years. When she was diagnosed with dementia, I looked after her at home for as long as I could. When she moved into a care home, five and a half years ago, I still visited her every day to chat, have meals with her and give her additional care.
But when coronavirus hit, Lesley’s care home went into lockdown and I didn’t see her at all for more than eight weeks. Going from seeing and caring for Lesley every day, to complete radio silence has been so difficult.
After some time, I used WhatsApp video calls to see and speak to her as often as I could. But due to her dementia, I wasn’t sure if she could understand it was me on the phone. Calls just don’t compare to seeing her in person. It really isn’t a solution for people with advanced dementia like Lesley.
'I know it’s for the best, but the hardest thing to cope with is that you don’t know how long it will go on for.'
Eventually, I have been able to see her for socially distanced visits in the garden, which I was hopeful about. But these are really hard for both of us.
It’s nice to be able to see her and make sure she’s okay, but without being able to go near her, it’s hard to get a response from her.
Being outside makes Lesley sleepy, and being two metres away makes it impossible to meaningfully engage with her. I’m worried she doesn’t even know I’m there.
No end in sight
It’s now been five months since the care home first locked down, and it feels like there is no end in sight.
When someone has severe dementia, five months is such a long time. As many families will understand, visits and time with a loved one with dementia becomes more and more important.
I understand the manager needs to keep the home safe, and I am happy to be tested and wear PPE to keep everybody protected. If I did that, I would be no more risk than the carers in the home.
It’s having a huge impact on both me and Lesley, and I would do anything to be able to see her properly again.
Like many people, I was eagerly awaiting the Government’s guidance on care home visits, which was published last week. Unfortunately, this doesn’t seem to have made much difference to us yet, and our visits aren’t changing much.
The guidance states that individual assessments should be carried out if the recommended visits do not work for people, and it is now up to Local Authorities to work with care homes and make sure this happens.
I know many other people are having difficulties with care home visits too. With the infection rate falling and lockdown easements evolving, I believe a blanket approach to care home visits is no longer fair or acceptable.
Coronavirus has caused too much devastation for people affected by dementia. Now, families like mine must be better connected and involved in the care of our loved ones.
Will you write to your Councillor about care home visits?
Alzheimer’s Society have developed key recommendations for local authorities to take into account when supporting care homes to reopen safely for people affected by dementia.
You can help by sending Alzheimer’s Society’s briefing to your local Councillor, to make sure our calls are seen by the right people in your area.