Caring is a journey not an identity
Claire Unwin, part of the wider team at Mobilise, shares her story of caring through Covid-19 lockdown
I’m looking at a ceiling I’ve never seen before. Mum’s put the borrowed smartphone on the coffee table, presumably thinking we’re done talking. “Hello Mum, it’s a nice ceiling in that room, isn’t it?” I see her gaze up. “Yes, lovely” she says. Mum’s in a drawing room with a large bay window, leaded panes and a beautiful detailed ceiling. It’s a room I’ve never seen, in a care home I visited 3 years ago when Dad and I visited to discuss where Mum would live “when the time came”.
For the last 5 years, Mum and Dad have continued to live at home, with gradual increased support from friends, family and professional carers. But on March 13th 2020, Mum’s day care centre closed due to the Covid-19 lockdown. Mum is 87 and has been living with vascular dementia for an unspecified number of years. Unspecified because depression is hard to distinguish from dementia, so as a family we probably missed what is termed as ‘early stage dementia’ and only started giving Mum the care she needed when ‘mid-stage’ symptoms became apparent .
Dad is 89 and three-quarters. The three-quarters is significant. His 90th birthday party, booked at the village hall in their tiny hamlet, is now on hold. More significantly, Dad is Mum’s sole carer.
Caring is a journey, not an identity. And everyone’s journey is different. I recently found an old email exchange with social services and realised I’d started this journey 5 years ago. We’ve had local carers from the village and carers flown in from abroad to provide emergency respite by a very professional national agency. We’ve been able to keep Mum at home thanks to Age UK’s day care centre. We started with 1 day a week and were up to 5 days. So I knew that having Mum home with Dad 24/7, with no support, was a time-bomb ticking.
What followed was remote care on Red Bull! Food and provisions first. Care solutions second. They live 3 miles from any serious supermarket and don’t do online anything. I even woke up in the night thinking about toilet rolls they might need! Mum is doubly incontinent, so gets through them at a rate that would challenge the toilet roll calculator. “We’ll just cut up newspaper, like we used to,” said Dad.
It showed his determined resilience. On day 2, he surprised me again. “I’ve sat down with Mum and we’ve drawn up a 12 week plan for lockdown.” Lunch, dinner, poetry, peeling potatoes together. He was upbeat. By day 4, he was beaten. He’d been up several times in the night, had cleaned Mum twice by lunchtime and was recognising he couldn’t manage on his own.
For some time, I’ve felt we were walking the carer’s tightrope. If Dad fell ill, the only ‘Plan B’ was for me or my brother to dash 140 miles up the M1 and step in. Until even that wasn’t enough. He was also resistant to help. Fiercely proud and not wanting to “let her down”, “all part of the deal”. These were common discussions. They’ve been married for 64 years. Then there is the cost. Care homes now ask to see if you can fund for at least 2 years and charge between £650 and £1400 a week! We had attendance allowance but even day care was costing £370 per week. Another family discussion.
But in the end, the care and well-being of your loved one trumps everything. As a family, we are all now in agreement. Mum needs professional care 24/7.
I’d visited the Quaker care home nearby over 3 years ago. They understand elderly and end of life care. They also understand family emotions. I feel that Bev, who manages the ship, knows how we will be feeling before we do. I got in touch on day 4 of lockdown and she explained she had no rooms. But she remembered me. She’d called me 18 months ago with a room, but as a family we were not ready. But we have moved on and on day 6 she called me to say a room was available, not because of Covid, and might we like it for Mum?
We mobilised. Dad packed and Mum moved in on April 7th. Bev called me on April 8th. I saw the number come up on my phone and dreaded the news. “Just a courtesy call to say Mum is doing well. We’ve washed her hair and she’s had breakfast.” “No way! She hates having her hair washed!” I said, full of relief.
“Dad will be feeling some sorrow,” said Bev when I called this week, day 14 in the home. He’d dropped off some more things and they’d managed to allow him to sit with Mum in the garden, at a safe social distance. Long before the pandemic, I’d recognised the skill of the professionals in the care sector and I hope they will now get more support and true acknowledgment for the vital role they play in families’ lives as well as in society.
As we start the next phase of our journey, I’m now grateful to carers I’ve never met, using their own smartphones so I can facetime with Mum, admire the ceiling and, if I’m lucky, see her smile and sway as we sing just one more round of “We’ll meet again…”
 Dementia is an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person’s ability to maintain their activities of daily living. Although age is the strongest known risk factor for dementia, it is not a normal part of ageing.