Real stories

Rebecca’s story: ‘I need to have some proper contact with my dad in his care home’

Becoming isolated

My dad was diagnosed with mixed dementia in 2015.

He always loved to socialise and walked every day. Mum and I were struggling to cope as he declined in the last year. So, in April 2020 we decided to move him into a care home. We never imagined lockdown would continue for as long as it has.

It was very difficult putting him into a care home during coronavirus. When he went in, he had to isolate in his room for 14 days.

That was a really difficult time. We wrote him 14 letters, one for each day, and rang him twice a day.

By the end of the 14 days, Dad had got into the habit of not coming out of his room so now he stays in there most of the time, getting little stimulation or exercise. The care home keep telling me, ‘He likes his own company.’ No, he doesn’t. He’s a very sociable man.

When we speak to him on the telephone he’s confused, asking when we are coming to get him. It’s heartbreaking. I know he’s really struggling.

I can’t go in to see him 

Dad is very proud and was always smartly dressed. Lately his appearance isn’t as good. I used to cut his fingernails, shave him, get him up and dressed every morning. Dad's mobility is much worse too – he’s had more and more falls. In December, he had 11 falls in two weeks.

The doctor also had to increase Dad's dose of Memantine (an anti-psychotic medication). If I was able to provide extra care, I would be able to help with some of this.

I know best how to care for him so I asked to go in and help but was told no – despite now having had my first vaccine and being tested twice a week, I am not deemed safe enough to care for my dad.

We need to do what we can to beat this virus. But people living with dementia aren’t just dying from COVID-19, they are dying from the loneliness that a lack of social contact brings.

As the Government plans to relieve national lockdown restrictions, they should prioritise a timetable for care home visits and provide transparency on how vaccinations impact these visits.

I am also told if he attends his hospital appointments he has to isolate for 14 days again. People outside of care homes don’t have to do that. I either take Dad to his appointment and then he has to self-isolate which will make him decline more, or I decide not to take him to appointments – and he’s got a heart condition and glaucoma. Either his physical health or mental health is going to decline.

My mum is blaming herself for putting him in there. She’s spiralling mentally, thinking, shall I take him out? But she can’t because she wouldn’t cope. 

I begged for him to go into the care home. I thought it would be a relief for Mum and give him some stimulation. It’s gone completely the opposite way. We miss spending time with him so much. 

I want the Government to have a ‘can-do’ attitude. I fear that there is a real possibility that, should the Government not take urgent action, visits could remain stopped until those in JCVI priority 1 groups have had their second vaccination, which could be three months away.

Wait until May? No way

Almost a year into the pandemic, I don’t want any more time wasted. I don’t want my dad to be even further into his dementia by the time we get to see him.

I need to know I’m not going to be living the next three months as I am now. If I have to wear full PPE and be tested, that’s fine.

I will do whatever it takes. We need to have some proper contact. 

The worst thing would be if something happened and he passed away and I haven’t held his hand, given him a hug, or even had close contact with him in the last year. That would make me so furious. 

Stand with Rebecca 

The pandemic has caused too much devastation for families affected by dementia. 

The Government must prioritise care home visits in their upcoming roadmap to ease lockdown. These visits are vital to the health and wellbeing of people affected by dementia.

Rebecca's story was initially published in September 2020 and was amended in February 2021.