Caring sucks! A month or so ago I was at a very low point. I desperately wanted to hit a refresh button. Surely there is more to life than feeling alone when balancing caring responsibilities? Loneliness is the lived reality of carers. While loneliness affects all ages, all backgrounds, carers too often have a worse time of it.
My dad (pictured) has Alzheimer’s. He was diagnosed 2 years ago. My mum is his primary carer. I tried for 5 years to convince my parents to start the assessment process for my dad. Possibly put in some advanced planning. But who wants to acknowledge that you are reaching your limits? That your memory is failing you? I don’t begrudge my parents for not wanting to accept what was evident to anyone looking in from the outside.
Let me share with you my and my mum’s experience of loneliness.
Mum’s loneliness experience
My Mum last year was struggling in her caring duties. So much so that her health and mental health suffered. She was admitted to hospital. I remember the day when we noticed the staff starting to treat mum differently. The staff now viewed her as a mental health patient, not a potential surgery patient. She couldn’t get to the toilet without assistance but what used to be an almost immediate assistance could go unanswered for over ten minutes. The hourly chats with staff ceased. The opposite of what a lonely person might need.
Mum was loud in expressing to social work and mental health staff she was desperately lonely. She had no-one to talk to face to face on a daily basis and the lack of social contact was affecting her health and wellbeing. Participation was offered as the solution to loneliness. Her feelings of loneliness were put down to social isolation. Yet, her context wasn’t considered.
Mum tried. My sister and I tried. No-one was interested in the fact that mum can’t drive. She rarely participated in groups in the past. She was scared to leave dad alone for long periods of time. She forms friendships easily. She has lots of connections. Participation wasn’t a viable option.
My sister and I took it upon ourselves to make change. We ring or text daily, visit weekly. Even if it’s for a few minutes it makes a difference. My parents get weekly cleaning support from the same worker. Substitutes are not accepted into the house. The quality of the interaction is important. Quantity of interactions for my mum is not a substitute for quality.
My loneliness experience
Watching my dad deteriorate is hard. Some weeks are really hard. Watching my mum struggle with loneliness is also hard. The more time I spent with my parents the lonelier I was beginning to feel. I’ve always been the strong one in my family, stoic even. Admitting that I felt lonely was like admitting failure. I know I was carrying too much. The expectations I placed on myself were unrealistic and it was affecting my health and wellbeing.
In contrast to my mum, everyone in my life asked what I needed. I was surrounded by people – at home, at work, friends – who acknowledged my feelings without judgement. Offered a range of solutions that were more about what they could do for me instead of what I could do differently. I was never made to feel that my feelings of loneliness was a deficit. Participation was never offered because my health needs where considered in my context.
I know more than ever how lucky I am that I have such a supportive and considerate husband, friends and family. I’m very fortunate that I have an employer that understands that loneliness is a health issue, that it affects anyone and at different stages of life. I know that I am an exception and not the rule which is sad.
My sister in her job was only afforded the same compassion and flexibility that I receive when my mum had cancer. Less so when she mentions Dad’s Alzheimer’s – that’s what nursing homes are for! Cancer is considered a real health problem, its more tangible, easier to understand. For us it was an easy problem to solve. Loneliness has a greater impact on my mum’s health and wellbeing than cancer ever did. Unlike me, if my sister asked her employer for a day off to support our mum because she was lonely, she’d be laughed out the door.
As employers we need to be more open to discussing the impact of loneliness on the health of our employees, especially carers.