The importance in caring for dementia carers

Miryam Clough explains why it is her role as a Support Worker to not only care for her patients, but their family too.

It’s a sunny morning and we’re walking through the neighbouring streets in search of lions; what’s not to like about caring for someone with dementia?I’m working as a live in carer for two weeks.

Making the transition from a dementia unit where I’m part of a team on a revolving 24-hour rota, to working on my own 24/7, (albeit with the back-up of an agency and a daily relief carer) is surprisingly challenging. What strikes me most is the overwhelming sense of responsibility.

It’s all down to me.The first few days I leave the bathroom door ajar, just in case I’m needed. The first few nights I struggle to sleep, hyper-alert to every sound.

Gradually, I figure out the difference between a cup being awkwardly placed on the bedside table, and a cup being tapped to attract attention.

Gradually I start to relax and have a good night’s sleep, only to go in the next morning and find the covers have been kicked off in the night.

The weather’s taken a turn for the worse.

If she dies of hypothermia, it’s down to me.

The next night I’m up and down checking that the covers are still on.

The agency stresses the importance of taking breaks. Unless I make plans to meet someone, I find it hard to leave when the relief carer comes.

I can’t abandon the breakfast dishes, and if my client needs the loo and the relief carer can’t hoist, then it’s down to me. Surely?

However, unlike family members caring for loved ones at home, I can take breaks. I do have the agency to fall back on. The relief carers are great. I’m only here as long as I want to be.

I’m used to the demands of dementia care, and to working with people who have mislaid their ability to nuance their interactions, or to consider the needs of others.

I’m also used to dealing with verbal abuse and physical aggression at work, so the odd brusque comment or refusal to eat the food I’ve carefully prepared, just washes over me.

I find I can be patient at 2am. I’m not a relative, caring for a loved one with dementia. Notably, I’m not an older person struggling to care for my partner on my own.

Caring for the carers

I think of one of my homeopathy patients, a lovely man in his 80s who came to see me for recurrent infections. He’d been caring for his wife who had Alzheimer’s. Like me, he found it difficult to stop.

When his wife was at day care, he’d do the shopping, the housework, and shower. Things he was unable to do when she was at home because she’d become distressed if he left the room.

He was exhausted from lack of sleep, and overwhelmed by responsibility.

He hadn’t done anything he enjoyed for months. Even reading was too tiring.

He seemed depressed. His life revolved around a woman who no longer recognised him, and her relentless needs.

I prescribed homeopathic medicines and a weekly visit to his social club. The infections subsided and his energy picked up.

Over the weeks, we worked on the terrible guilt that was preventing him from asking for help, and the grief that was stopping him from letting go.

He reached the point where he was able to contemplate finding a care home for his wife, and she settled in well. He visited her regularly and began to enjoy life again.

Without support, the outcome may have been very different.The physical and mental toll on those caring for others with dementia is high. Often, we care at the expense of our own needs and wellbeing. The practical task itself is unbelievably demanding.

For those caring for loved ones, the physical and psychological burden is often compounded by feelings of shame, guilt and resentment, grief at the loss of the person they knew, anxiety for the future, and practical or financial strain.

For paid carers, similar feelings and concerns are attached to working in a low status, poorly paid job. Suicide rates for carers are high. 

With rising rates of dementia, it is imperative that we prioritise caring for the carers.

With rising rates of dementia, it is imperative that we prioritise caring for the carers.

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