Real stories

'People with dementia have been the last to be considered in this pandemic' - Janet's story

Caring for Mum

It came as a complete bombshell when Mum was diagnosed with mixed Alzheimer’s disease and vascular dementia eight years ago. 

She lived on her own but four years ago she fell and broke her neck. When she came home from hospital, she needed a lot of care.

I lived with my husband in our family home but I decided to move in with my mum. I just wanted to get her back on her feet. But her needs only increased and I never went home. 

I didn’t realise what I was in for.

Isolating

The GP came out to see Mum as coronavirus started rising. I was told that the hospital wouldn’t be the best place for mum if she needed medical care because there were so many risks.

I was sure that if Mum or I caught coronavirus, or even flu, this would be devastating for both of us. I was asked to sign a do-not-resuscitate (DNR) order. It felt at the time as if the GP had another agenda.

I decided the only way to ensure we could be safe was to totally isolate ourselves. I didn’t have any choice.

It’s just been Mum and me for the whole of lockdown. We’re completely isolated. I can’t see my husband, children or grandchildren. Nobody’s been in the house.

My husband does the shopping for us but he drops it off then leaves to reduce our contact because he’s higher risk too so we’ve had very little contact.

My little grandchildren used to sit on our laps while we played games with them – we can’t do any of that now. That has been devastating. We tried garden visits with my children and grandchildren but it felt like Mum was an animal in a zoo. She was also cold and uncomfortable.

Before lockdown, Mum had some sort of enjoyment in life. Now her eyes are empty and she seems depressed, anxious and unresponsive at times. Maybe these changes would have happened anyway but they’ve definitely got worse during lockdown.

Her dementia has really progressed.

I used to take Mum to a day care centre within a residential home. They stopped people going in and haven’t opened since. 

Most of the reporting about lockdown has been around care home visits. I think what’s happened in care homes is absolutely dire but I’m in a dire situation too. What will happen to mum if I fall ill?

Despair with the Government

It feels to me that the Government aren’t bothered about the elderly and vulnerable at all. People with dementia have been the last group to be considered. 

I’ve got no confidence in them, which just makes me angrier and lose hope in what they’re actually doing.

Social care has been ignored for years and the pandemic has shown its shortcomings. It needs to change.

I’ve written to my MP a few times but the only reply I received was a generic reference to out-of-date guidance. I absolutely despair. They need to get testing sorted so I can trust carers to come into my house again. Unpaid family carers desperately need respite and government support.

Unclear future

Even before lockdown I was exhausted. I needed a break. Mum’s care is literally 24 hours. She gets up in the night and bangs into things. She has osteoporosis so every time she falls she breaks something. You never know what she’s going to do.

I’ve hit a wall. I don’t know how I’m going to be able to carry on. I can’t see much light at the end of the tunnel and I wonder about what the future holds.

I was at the beginning of retirement when Mum got diagnosed. I don’t feel as if I’ve had one. I wouldn’t change my decision to care for mum but I never thought I’d be doing this in a pandemic.

I couldn’t imagine how it would get any worse but it has. It’s been horrendous.

Family carers are being ignored by Government. My only way of coping is to try to blot it out, forget about yesterday, and not think about tomorrow. Just get through one day at a time. That’s all I can do.

Stand with Janet and Dorothy

The impact of coronavirus has been shattering for people affected by dementia. Urgent action must be taken to better protect people ahead of the winter.