Sally Rees, National Third Sector Health and Social Care Co-ordinator at WCVA shares her experiences of caring at a distance. Her mum resides in an Elderly Mental Health Unit, attached to a nursing home. Sally writes about her current contact – the highs and lows – now heightened by the Covid-19 emergency.
What can I say about my Mum? She’s called Pat; she’s 82 and a fighter. She wouldn’t mind me writing about her and our experiences, because she’d want people to understand how it has been for us. She was gregarious, interested in people, caring, mischievous, and entertaining. She wouldn’t mind me sharing this picture of her.
A lot of who she was here has gone, but now and again her eyes sparkle, she’ll remember a name, say something hilarious or random.
Nowadays, when she does speak, it’s with a cockney accent! She wasn’t born within the sound of Bow Bells, so she could give Audrey Hepburn in ‘My Fair Lady’ a run for her money with her similar dubious accent! Staff tell us that, during lockdown, her accent has been amusing them, which made us laugh out loud. Even in difficult times, we need those moments of joy.
We feel lucky Mum is still with us, albeit without having seen her for the last three months. The care home stopped family visiting well before the lockdown announcement. At the start of the year, she was given just a couple of weeks to live. So, we’re lucky. She’s confounded us all.
It was doubly devastating for us when Mum was given the dual diagnosis of Vascular Dementia and Alzheimer’s Disease, as well as a recently diagnosed long-titled inflammatory disease. It means she’s now largely bed bound.
She first went to the care home on an emergency basis, when my father finally admitted he couldn’t cope. This is a common occurrence: most carers don’t want help or want anyone in the house. While Dad himself had district nurses to meet his own significant health needs, he refused any help for Mum, even her personal care (nor did he want us to help). He thought by shouting at her to have a shower she would have one, but she’d forget as soon as she reached the stairs.
No one can prepare you for dealing emotionally and practically with a loved one forgetting words or how to carry out a daily activity. You’re also not prepared for your father’s concealment, denial, and downright opposition to discussing your mother’s memory issues, let alone what we should do about them.
Dad couldn’t deal with Mum’s memory loss. It wasn’t until I went on a hunt for disappearing items in the house that I knew she’d been to see a health professional. Among tablets, hidden in a tissue box (her hiding place for chocolate!), I found Aricept, a drug used to treat mild to moderate dementia.
It turned out she’d also visited a Memory Clinic with Dad and was seeing a Gerontologist, though she said ‘he [Dad] took over the whole session and I didn’t get a word in and it’s my appointment!’ It was typical of him; he always liked to be in control. Eventually, Mum’s anxieties grew (scratching herself, tapping her feet) while Dad started to lose control. She would pack bags and leave them around the house – full of tea towels, underwear and half eaten biscuits.
It was like she wanted to escape. And she’d regularly succeed, when my father would fall asleep. Luckily, she would always be found by people who knew her, like the postwoman. I think, for Mum, it was a relief to finally leave and move to a care home. Within days, all her anxieties disappeared.
She only saw my Dad once more, until he passed away. To this day, we haven’t told her. She never asks about him really, despite being married to him since her early twenties. It’s sad, and at time my sister and I become quite emotional as we remember good times and lots of laughter.
Fiddle Cuffs and Information – Lifelines
Though Mum was active for a while in the home, she had several periods in hospital, which was difficult for her. Fiddle Cuffs (also known as knitted muffs or twiddle cuffs) proved a godsend, because they keep my Mum occupied for hours, and settle her ‘restless hands’ and stopped while in hospital pulling out a cannula. People with dementia often find fiddling with a variety of tactile material and wool a helpful way to relieve feelings of anxiety.
Mum is in the ‘final’ stage of the seven stages of Dementia. Although we have had plateaus in between, it has been hard to watch her fade in front of you week by week.
Being able to read about the symptoms and what you might expect in the latter stages of both Alzheimer’s and Vascular Dementia can help. The Alzheimer Society website is really useful, though some find the information too overwhelming. But I like to know, so I can prepare myself.
In these uncertain times, we’re now – as a family – cut off from her. It’s important we don’t visit so we can keep Mum safe, as well as other residents and staff. But it’s hard – we’re wondering how much she’s regressed and waiting for the dreaded phone-call.
Already, the phone has rung. There were confirmed cases of Covid-19 in Mum’s care home. We held our nerve. She tested negative. We’re told she continues to ‘be on good form’. But what does that mean, without even seeing her via a video call? We are awaiting the results of a re-test.
Covid-19 means we’re missing all her good days. We’ll never get them back. It’s hard not knowing when we will see her again. It’s harder yet, knowing we are far from alone, with thousands of families facing the same or worse.
If you’d like to knit a Fiddle/Twiddle Cuff, Knit for Peace have provided this pattern.
Contact the Volunteer Co-ordinator or Manager at your Local Health Board to offer to knit a cuff or your local care home. Remember to wash and bag up to avoid transmission of Covid-19. For example, Aneurin Bevan University Health Board welcome cuffs both knitted and crocheted.
Read more about dementia on the Alzheimers Society website.
If you’d like to share your experiences please contact Sally Rees firstname.lastname@example.org she would love to hear from you and how we can make a safe return to seeing family members living in care homes.
 Aricept (donepezil) is often prescribed to people with dementia to prevent the breakdown of acetylcholine associated with the process of memory, thinking and reasoning.