In the UK, one in eight people are carers. Every day, a further 6,000 people take on a caring responsibility – that’s more than 2 million extra carers each year. And yet many people do not anticipate becoming a carer. In fact, it can be completely unexpected.
I was one of those people. The caring role was thrust upon me unexpectedly. Until that point, my mother-in-law had been fit, healthy and independent. I suppose looking back over the course of the previous five years, I had started bringing her meals more often, because unconsciously I must have known she wasn’t eating properly. In that time, she also started spending more time at our house. But she was never a burden. In fact, quite the opposite: she would contribute by loading the dishwasher, matching socks from the laundry basket or preparing vegetables.
One day she admitted she had constipation, and after over-the-counter remedies offered no relief for a week, I drove her to the GP. The GP had no record of her: her last visit had been 20 years previously.
Within 24 hours she was in hospital and within three days she was diagnosed with terminal cancer of the bowel.
A colostomy followed and we were told that she was terminally ill. I had gone ahead with the kids to Scotland for a pre-planned holiday, leaving my husband visiting her in hospital. When I returned a week later, he had made plans to move her into our home (we are fortunate to have a guest annex). I became her full-time carer from home, while continuing my full-time work and looking after the children, one of whom was preparing for GCSEs.
Despite having an extremely good relationship with my mother-in-law, being a carer is challenging beyond any relationship experience you have ever had. You are the only one who is there all the time, subject to the tears, frustrations, and psychological and physical pain of the person being cared for. People visiting would ask how she was, but a selfish voice in my head would want to say… ‘Are you not going to ask how I’m coping, too?’
Within weeks, it did become more difficult. She refused a walking frame and other equipment to help keep her safe. Occupational health visitors brought a catalogue and I happily chose her a shower seat, walking frame and bed bars, but to my frustration I was told they could not be supplied unless she agreed.
Because I know first-hand how difficult and upsetting caring can be, here are the tips and tactics I learned to help me cope…
Focus on their key motivation
My mother-in-law was adamant she wouldn’t go back to hospital, so I suggested the use of the safety equipment would reduce her risk of falling and a potential hospital stay. Only then did she agree to the equipment
Don’t take things personally and accept input from others
My mother-in-law did not see me as her carer. She did, however, “buy into” the fact her son was taking care of her (despite the fact he was working full time). I learned to manage the emotional irritation of this, for the sake of achieving the goal. If my husband told her, ‘Mum, it will make me happy if you use your walking frame’, she would. I also noticed she listened to the district nurse and later the hospice nurse, so I engaged their help.
This is the enemy of co-operation. Proactively force yourself not to react – if you get angry, try to take a deep breath and simply walk away for a moment, if it’s safe to do so.
Accept the family dynamics have changed
In our case, our home became Grandma-focused instead of children-focused. As an adult, I could accept that, but it was not so easy for the children. We accessed family counselling, which helped everyone realise that the children’s needs did not go away in the face of high-pressure needs from someone who was sick.
Don’t ignore the needs of the rest of the family
For example, we were obsessive about buying my mother-in-law food treats, to tempt her waning appetite. It was critical to remember to bring treats back for the children, too.
Don’t ignore your own needs
Neighbours I hardly knew kindly offered to sit with her, to give me some respite. She was not entirely comfortable with this, but it was wholly necessary. Caring is incredibly high pressure, both physically and mentally. This time out gave me the chance to be by myself, with my children or with my own parents. It’s easy to become overwhelmed with the needs of the sick person, but you need to proactively work at maintaining balance… for everyone’s benefit.
I took the view that if friends, family or neighbours offered help, they meant it. I noticed some people in my situation would say, ‘Oh, they are just being polite.’ But I disagree. I think many people like to help and contribute, in order to feel useful, so let them.
Try to maintain a homely atmosphere.
The house can quickly become institutionalized, with medical equipment and unfamiliar, often unpleasant smells. Remember you are delivering care in a family home, so it’s important to keep things as normal as possible, for the psychological wellbeing of the whole family. Odour control was a particular issue that I found difficult to deal because of the colostomy and frequent food spills. As a result of my experience and to help other carers facing the same issues together with a hygiene expert I have developed a range of gentle, ethical and beautifully fragranced hygiene products that add a touch of luxury to home care. Please feel free to browse the range.
Contact Julie Foster or Quentin Steele 01473 736256