Rebecca’s dad, John Carthy, who has dementia, went into a care home in the middle of lockdown. Rebecca worries her dad's dementia will have progressed further by the time the care home allows her to to help care for him. Rebecca is calling on the local government to step in.
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, he 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. His mobility is much worse too – he’s had three falls recently.
I know best how to care for him so I asked to go in and help but was told no – garden visits only.
This isn’t a criticism of the care home or its staff. I totally understand their point of view. They want to keep everyone safe. But the number of coronavirus cases locally are low, so why are the rules so strict? Why are some care homes allowing inside visits but not ours? Why can’t a family member wear PPE and have closer contact?
I’m 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 care home hierarchy to have a ‘can-do’ attitude. Where there’s a will there’s a way. I wonder if it’s a misunderstanding of what the guidance allows that’s preventing them from being more creative.
Worries about the winter
I worry about a second spike and further periods of lockdown. By the time we’d get to see my dad he would be much further into his dementia.
I need to know the care home is going to bridge the gap between families and their loved ones. I need to know I’m not going to be living the next six 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 six months. That would make me so furious.
Care homes are trying their best but sometimes they’re getting it wrong and making decisions which don’t seem logical. Local Government must step in and give people their lives back.
Stand with Rebecca
The pandemic has caused too much devastation for families affected by dementia.
As care homes look to re-open safely, or face a local lockdown, families must be more involved in the care of their loved one with dementia. Our recommendations to local government can make this possible.
Support our campaign to connect families during coronavirus
Join our campaign to hear more about how we're supporting people with dementia in care homes and how you can help.