I ACCEPT THAT we must all die. I have to accept what is coming …. I prefer to be at home and to have someone near me at night, my family, [spouse], my son and daughters …. I don’t want to be alone.
These are the words of Edward, a man suffering from motor neurone disease (MND).
MND is a progressive, degenerative condition that attacks the nerves in the brain and spinal cord.
Essentially, messages sent from the brain gradually stop reaching the muscles, which has an impact on how people walk, talk, breathe, eat and drink. People suffering from MND generally need to be cared for – often by a family member.
Edward is one of about 300 people with the condition in Ireland, which has a huge impact on people’s ability to function and perform everyday tasks.
A significant majority of people with MNS are cared for in the home by a family member, with additional home care also being an option. Occasionally, the burden of care can become quite hard to handle for people.
“[In my study] I didn’t know family was going to be the main context, but it emerged to be that,” says Dr Geraldine Foley, an assistant professor of occupational therapy at Trinity College Dublin.
Dr Foley recently published a study on MND, entitled “‘I hate being a burden’: The patient perspective on carer burden in amyotrophic lateral sclerosis.”
Amyotrophic lateral sclerosis is another term for MND. Foley interviewed 34 people with the condition as part of her research.
What she found was that both people with the condition and those who care for them provided levels of emotional support and care for each other – with the care often times being reciprocal, rather than just one way.
‘l just hope that I can keep going, keep going as long as I can without being a big problem to people … a burden I suppose …. My husband there, he is great like, he does everything but I feel in myself I hate being a burden on him …. So I’d love just to slip away [die] quickly …. I’d hate to become too dependent.’ – Sally
Carer’s burden is defined as the stress and strain that caregivers experience as a result of having to look after another. It can have a huge strain on relationships between people.
Dr Foley’s research found that people suffering from MND can experience this burden also, where they feel responsible for the pain and worry felt by a loved one caring for them.
The approach Dr Foley took to collecting information is known as grounded-theory.
“Basically it’s a very open-ended way of collecting data and developing findings from that,” says Dr Foley.
“You don’t go in with pre-determined ideas on what people think or say – you ask open-ended questions and you let the data emerge.”
What emerged from Dr Foley’s interviews was that many people suffering from MND felt responsible for the happiness of those family members who were caring for them.
This meant in effect that they felt the burden of care almost always associated with the carer rather than the person being cared for.
“This came through the data and it was something that had never really been talked about in MND before,” says Dr Foley.
There’s very, very few papers that actually address this… It’s new in the area of MND but it’s also new in the area of terminal illness in general.
The interviewees that Dr Foley talked to lived at home mostly and were cared for by family. Many expressed sentiments of worry for their families and the effect their illness had.
One woman, Helen, spoke of how her husband had died of cancer a year after she had been diagnosed with the illness:
“He was on the chemo[therapy] and he said to me ‘I can’t put a comprehensive thought together.’”
So his mind was obviously swirling with his condition and my condition …. [But] there could be no real talk about me because [I was] just hoping that he would keep well.’’
Another man, Paschal, told Dr Foley about the need he felt to keep strong for his family.
‘‘When I got out into the car park [following diagnosis] and my wife was in floods of tears and that you kind of get this, I don’t know, feeling of determination and resolution,” he said.
As I say you got to be strong. Not so much for yourself but for the people and family around you.
In the conclusion to her study, Dr Foley states that after showing how family care giving for people MND is reciprocal, it was important to study further how people suffering with the condition give care to hose who care for them.
“Our findings point to the need for service providers to support [MND] patients when patients themselves provide support to their family.”
We believe that increased attention to the supportive roles that people with ALS enact in family is now required to counterbalance the already strong focus on caregiver burden in [MND] research and practice.
Anyone looking for information on motor neurone disease can visit the Irish Motor Neurone Disease website on imnda.ie
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