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 that the worst case scenario is 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.
Beverley’s stroke was of a type with only a 50% survival rate. As surgeons at Belfast’s Royal Victoria Hospital were operating on her, doctors were explaining the seriousness of the situation and preparing the family for the possibility of her death. Her sister managed to catch the last flight home having been told to expect the worst. But when she arrived, she urged the rest of her family that “where’s there’s life, there’s hope.”
The family did not lose Beverley. She had to learn to swallow, eat, speak and walk again but eventually, she was discharged from the Regional Acquired Brain Injury Unit (RABIU) at Musgrave Park Hospital. But that was just the start of Allan’s long and sometimes frustrating experience as a carer.
As Beverley herself put it, “Having a stroke is like falling down a mountain and then climbing back up again. It took us five months to reach base camp, but every day we are striving for the summit.”
Every day brought challenges. Within a couple of weeks, Allan realised that the private care provision was not going to assist practically in Beverley’s recovery. Beverley’s mobility was limited but, having called a meeting with the care provider, he soon found out that they were unable to assist her to be more mobile. He was simply told, “We don’t do mobility.”
“Thankfully,” said Allan, “I had been invited to attend Beverley’s physiotherapy sessions at RABIU, where I learned techniques such as open hand walking support and safe transfers in and out of cars.
“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 self-resilience of the carer.
“There are a lot of different parties that make up what we call ‘Team Bev’ – family, friends, neighbours, ambulance drivers, doctors, nurses, physios, OTs, psychologists, counsellors, employers, colleagues, social workers and care providers. However, whereas there is an integrated approach on the healthcare side, there needs to be a greater acknowledgement of the role of carers, whether they are family or professional. That dimension needs to be included in every person’s recovery plan.
“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 personal assistant is 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. This was the best action that I took to aid her recovery.
“I was then able to start spending more time looking after myself, and participated in some carers’ support groups.
“At one session, I lightly moaned about how signposting information for carers could have been better. A fellow carer replied: “You were signposted?”
“Indeed, this underlines how much more attention is required to those who will be looking after their loved ones. It would help greatly to identify an appropriate family carer, and to include that person in the rehabilitation process. That family member will be able to assist in the recovery of the stroke survivor more than any private care company.
“It would also help to brief the carer on what to expect, and even better if a carer’s health and wellbeing pathway could be devised, with sufficient services and support.
“The physical and emotional impact of stroke is huge but Beverley and I have been given a second chance, and we are making the most of it.”
Alan attends NICHS’s Carers’ Group in Belfast and he and Beverley both sit on the Integrated Care Partnership for South East Ards.
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, click here.
Find out more about the stroke support that Northern Ireland Chest Heart and Stroke offers.