Caring – a story of love and loss

As part of Carers Week, Somerset resident Zoe Hook (not her real name) opens up about her years of caring for family members including her husband. She shares her love, her loss and the appreciation caring gives you for the things you have.

I first became a carer some decades ago. My mother’s depression and anxiety deteriorated, and she turned to me. Our mother/daughter roles would switch sometimes.

For many years, I did not think of myself as a carer. We live in different countries now, but I still help her – mostly by phone and video calls. Currently she is stable, so we are able to enjoy a fairly normal relationship. Knowing it can change in a flash makes me cherish this time.

Some fifteen years ago, I became carer for my brother-in-law. I help him with finances, benefits and mental health advice. It can take a large chunk of my time – sometimes he is able to cope on his own. He lives nearby, so we can meet to sort things out, although a lot is done over the phone as well.

Then, a few years ago, I suddenly became carer for my husband – he had his first stroke. We were told he would recover in months, as they thought it was a TIA (Transient ischemic attack). We were also told he had a brain disease and not to worry about it. Much to my distress, he went downhill fast. Physically he was fine, but his memory and behaviour were badly affected.

A year later, he had another stroke. Since then his deterioration has slowed down. He is still physically all right, but his short-term memory is bad, and he struggles with planning and controlling impulses.

His behaviour can range from normal and kind; to childish; to needing to do things a set way; to being verbally aggressive and selfish. There is no way of predicting what his mood will be from one moment to the next. This is really hard for me as a carer and a wife.

We can live with the reduced short-term memory. At times it is painful, on occasion it is funny, but we are able to find ways to deal with it. The brain disease that was so casually mentioned after his first stroke has proved to be life-changing. It has changed my husband’s memory and behaviour.

The hardest part for me is losing the man I married. He used to be my rock and is rarely able to be that now. I mourn the parts of him that we have lost and celebrate what we still have. I still love him deeply, which make me feel every emotion more intensely.

What is it like to be a carer? Well, I can only speak for myself. It is difficult enough to do it for relatives – to look after your own spouse is hard, very hard. Caring is also beautiful in unexpected ways. It comes with huge responsibilities for others and massive trust from others.

Sometimes as a carer you feel hidden – if my husband is having a bad day we don’t go out, consequently people only see him on a good day – they don’t understand the challenges we face behind closed doors.

It can be devastatingly lonely. Sharing with other carers can be really helpful but it is difficult in covid times. I once belonged to a group, ‘Carers of older adults’  – it was so much help being able to talk to others who were having similar experiences. My husband would attend a local stroke group – another great place of support. Stroke groups can be found online, for example on Facebook.

Since restrictions on social gatherings started because of the pandemic, these groups have gone online it’s not the same as face to face groups – I miss our monthly get-togethers.

Before I was a carer for my husband, I never fully understood what others were going through. Because of this, I can accept that others don’t understand what I go through. To be honest, I envy them for still having a relationship that is unchanged by illness.

Having said all that, being a carer has had positives as well. Caring has taught me to make the most of what you have. It has shown me how deeply we can love. It has become part of me, and I dread the day it will stop.

Although being a carer is something that happened by accident, I have made a conscious choice to continue with it. Without doubts or regrets and with Love.

There’s lots of support available for carers in Somerset visit Somerset County Council’s website.