He was left with complete left-sided weakness; he could not sit on the side of the bed without falling to one side, and he had slurred speech that got worse when he was tired. Fast forward seven weeks, and he was discharged from the hospital with a care package, double-handed care four times daily, physiotherapy and occupational therapy input. For me, it was like being hit by a train, and the wreckage of our life was left behind; suddenly, my quiet life was spent answering the door, on the phone, being a nurse, sorting stuff out, cooking, cleaning and running up and down the stairs. Within weeks, I was exhausted and realised I hated being a carer, not something you can say out loud.
Was I coerced into being a carer?
Probably not at that point. I just wanted him home at first. Once our routine was established and I got more used to it, the day-to-day improved marginally; however, my husband did not; even with all the physiotherapy and OT input, he just did not get any better. I was heavily involved with the carers’ groups and our Local Council at the time, trying to improve the quality of life for carers whilst my own caring responsibilities were taking a toll on me.
Fast forward eighteen months, and things last summer were going downhill; my husband started suffering from various minor ailments, any one of which was not a particularly big deal, but all together, were debilitating for him and me.
I discovered that my stress manifested itself in my teeth, and I started to suffer from bad toothache; when I went to the dentist, they could not find anything wrong and asked if I was stressed. I pointed out that was an understatement and was measured up for a mouthguard to stop me grinding my teeth when asleep, and things improved for a while.
My husband had a 5-day hospital stay in September 2023. Still, he was discharged without a definitive diagnosis and was admitted to another hospital at the beginning of November 2023 for unspecified vomiting leading to dehydration. He was in hospital for three months and moved to a Nursing Home at the start of February 2024.
Those three months were the most trying of my life as a carer. My husband was physically deteriorating on the ward and unable to stand even on a Sara Stedy; he had a catheter in situ and was being hoisted from bed to chair. The physiotherapists and OTs on the ward said I should not move him alone. The ward staff, OTs, physiotherapists, and a Consultant Neurologist informed Social Services at the hospital that he should be in a care facility. However, the Social Worker put every obstacle in our way to coerce me into taking him home despite the medical and clinical evidence.
Now, I was being forced into being a carer.
We had three OT assessments conducted in a 6-week period, with the assessments stating that the rooms in question were too small and not suitable for the care of a patient with a hoist, as well as noting there are no downstairs facilities in our house. I felt I was being harassed, bullied, intimidated, and shamed into taking him home by services that were not primarily qualified or interested in his care. Our house was not a safe place for him to be cared for in, and as such, why force someone into caring in an unsafe environment?
As I indicated at the start, I held my ground and wrote to my MP, a councillor, and the Director of Adult Social Care because I was so stressed with it all. I would not let them bully me into taking my husband home, and he completely understood my stance on this and agreed. Less than a week later, a social worker called me to say he would be my husband’s social worker until he was placed. Two weeks after that, my husband was moved to his care home with excellent staff who really do care, and although I am relieved, I am also devastated as this was not the outcome I wanted. There were no good outcomes here, but the care home was the least bad outcome.
My husband’s case highlighted for me that the provision for people of working age is sparse at best and non-existent in most areas. My husband, unfortunately, has an old man’s condition, and he is a young man. He does not have a “sexy” condition such as MND; he is too old for young people's services, and he is too young for old people's services. As such, nobody cares. This leaves carers in limbo with little or no support, and unless you shout, no one listens or cares.
When I was asked to put pen to paper, I thought I would do a small, non-scientific survey, to see if anyone else felt the way I did about being a carer. I put the question in a Facebook forum for unpaid carers.
The survey returned that 47% of carers who responded felt they were coerced into their caring role. The first tranche of answers all came back that people did not feel coerced; however, once one person said they did, more people said they felt coerced. Several people also directly messaged me, and each of them said they felt coerced.
Saying you do not want to be a carer is seen as socially unacceptable, not just by professionals but also by the wider public and even carers themselves. Some carers stated that it was their lot in life or their duty, but why should that be? The first time I said I hated being a carer during a carers’ meeting, everyone looked at me like I had just grown another head. I did a video interview once about my thoughts on caring; the interviewer asked what the good things about caring were; I said I had not come across any, and that bit was excluded from the final version.
While I completely understand that some people are content with their caring role, it did not work for me, not because I am selfish or do not love my husband. I did it for almost two years, watching my husband deteriorate daily and not being able to do anything about it, and I tried. I think all people should understand that just because something terrible happens to a loved one, you do not have to take on that caring role; you do have a choice, but you will have to fight for it. It does not have to be your lot in life.
Barbara O’Connor, February 2024
