Let me share with you what it is like being a carer for a loved one and describe three of the lessons I have learned. When I met the man who was to be my second husband, I knew he was unwell because he had emphysema, a serious lung condition that means you have difficulty breathing. Despite that, I was in love and hoped/expected that we would have maybe ten years together.
This was the first of several hospital visits with different lung issues and all of a sudden caring became my new way of life.
During that first hospital visit he was also diagnosed with lung cancer, and given only six months to live because lung cancer can be very aggressive. Imagine my reaction … I’d come all this way, and instead of ten years, we only had six months!
Because he was living with an exceptionally healthy lifestyle his cancer seemed to be behaving differently than expected and his life expectancy was extended. He actually survived 22 months after the initial diagnosis. For the last six months he was on permanent oxygen but was up and about and doing things, which was great; he was even taking his oxygen tube down into the garden.
We had been together a year and a half and finally got married with a simple affair in our own home – a lovely celebration with just a few friends.
In the last few months, there were three big lessons I learned as his carer:
I’d heard about the importance of dignity and respect but initially, because I was so anxious that he would end up in hospital with another collapsed lung, I was trying to restrict his every move. He got quite cross with me for ‘mothering’ him and I had to back right off. Allowing him independence as much as possible was important so I learned to be ‘hands off’.
His personal care was no problem, he could shower and go to the toilet on his own and he could prepare and cook meals without too much difficulty. He could walk to the car and we could go out and visit friends with ease. He had portable oxygen tanks for outings. I was doing a lot more than before around the house and garden but he could still do stuff for himself.
2 Letting go of judgement and timing
As his strength depleted I had to discern the difference between disability and laziness. Washing up was an issue. He’d offer to do it but that was always in his own time and often I would end up in a grump because I hated the mess in the kitchen and would get fed up waiting for him to do it. In order to maintain harmony I had to let go of both judgement and timing and learn to not worry about the mess and not set deadlines for things to be done by.
3 Looking after me
I was getting more and more tired and realised the enormity of what I’d taken on and that I had very little time for myself. You often hear of carers dying before the partner they are caring for and that is often a combination of old age and exhaustion.
Recognising that I needed to look after myself more I felt into what would serve.
I love swimming and hadn’t done much since I’d moved to Australia, so I went to the public baths. They have areas where you can swim seriously at whatever pace you choose and also areas where you can walk in the water, do exercises and generally relax. For me it was perfect; I came back home after an hour in the water feeling totally refreshed. I joined for the year so I could go whenever I liked. I also booked an occasional hour’s foot pampering session with a friend. Taking care of myself in this way was a great support.
As his illness progressed, I needed more and more help, and towards the end of his life we had a group of friends who volunteered their time so that he was never alone and I could still go out and walk the dog, do shopping, volunteering or swimming. In the last week or so, a friend stayed overnight as support.
For the last few days he was less able to support himself and we were afraid he would hurt himself falling and we couldn’t get him up again, so he ended up in palliative care at a local hospital. They were able to ease the pain with strong medication so his body could relax and he finally let go, dying peacefully early one morning with his daughter by his side.
So there I was, a widow after only seven months of marriage. My life had turned out rather differently from what I expected, but it was glorious to find love like ours in my late 60’s, and it brought me here to a beautiful part of Australia where I am now a resident, so I have no regrets.
What I learned as his carer will stay with me for the rest of my life.
I have learned to give people space for their independence, to treat everyone with dignity and respect, to let go of judgement and expectations, to let people do things on their own and in their own time, and, most important of all, to take very good care of myself so that I don’t burn out.
Carmel R., Australia
For further reading you may like:
Can we truly care for other people without caring for ourselves