Don’t leave carers in the dark
The following article was published in the 2015–16 annual review of the Northern Ireland Chest Heart & Stroke:
Don’t leave carers in the dark
While we often hear what it’s like to fight the long battle of recovery after stroke, we don’t always hear what it’s like to be a carer of someone who is a stroke survivor. We may imagine becoming a carer when we are in our 60s or 70s, but no one imagines they will become a carer in their 40s.
Allan Leonard was just 44 when he became his wife Beverley’s carer. She had suffered a devastating stroke at the age of 40.
After five months in hospital, including the Regional Acquired Brain Injury Unit (RABIU) at Musgrave Park Hospital, Beverley returned home. But that was just the start of Allan’s long and sometimes frustrating experience as a carer.
“I was probably quite naïve about how soon I would be able to return to an ordinary routine. As a carer I never received any brief from anyone at any time in the process. I figured it out — as most carers do — along the way. There doesn’t seem to be anyone in the system who has any responsibility for the carer’s wellbeing, whether physical or mental. There appears to me to be too much reliance on the selfresilience of the carer.
“Once Beverley became stronger, after about a year, I succeeded in negotiating with the Health Trust to exchange some of Beverley’s personal care provision for personal assistance — a care professional who comes out to accompany and supervise activities directed by the client.
“For Beverley, this meant someone to watch her iron clothes, for example, or to go for short assisted walks in a nearby park.”
Inspired by his wife, Allan was determined to reclaim as much of his own life as practical, whilst accepting their new situation. “Many family carers are so overwhelmed with the enormity of the caring task they don’t take care of themselves. Beverley’s personal care provision meant that I could then spend more time and attention taking care of myself.”
And they both want “to turn something bad into something good,” as Allan put it. From his carer’s perspective, this includes him wanting an honest appreciation by health professionals of the carer’s role in the design of healthcare pathways. He does this by sitting on an Integrated Care Partnership for Ards, along with his wife.
Allan also attends a stroke carers’ group at NICHS, which he said has been useful:
“As with anyone dealing with a traumatic event in their lives, it helps to meet up with others in a similar situation. I suppose that I’m a more conspicuous member of the group — a younger male — but there’s usually someone else who gives me perspective, and the sincerity and goodwill by the staff, volunteers and all reminds me that I’m not alone.”
Caring can take a great physical and emotional toll on a person. If you are a carer, you need to make time for yourself when possible. Relaxing can help stave off feelings of anxiety, stress and even depression. There’s lots of help available.
To find out more, please go to www.nichs.org.uk/carers