When Life tells You to Take Time Out
2017 was a tough year for us! Throughout the time we’ve been together (13 years), my partner, Neil, has been a carer for his Down Syndrome brother, Mark. In December 2016 we found out that Mark had a terminal brain tumour with 3 to 6 months to live. He managed 8 months.
For the first 3 months he was still managing to walk, talk and eat his own food, but he started deteriorating over the last 5 months. My work has always been my priority but when you are in a supporting role in a situation such as this, your thinking changes. I’ve recently attended an AVN course and one of the questions was ‘What is your WHY?’ In other words, why do you do what you do for work? It’s a question that you have to think about. You also have to consider your values to truly understand what your WHY is. When you are helping to support a dying person, you don’t need to think. My WHY was to be there for Neil and Mark in whatever capacity I was needed.
I found over this period that my clients were very supportive and accepted that I couldn’t always be there for them, as I usually would be.
In this situation you see with clarity what is important in life and also who gets it and who doesn’t. When Mark was in his wheelchair we had people who immediately helped us to manoeuvre his chair if it was difficult. On the flip side, we had people push past us to get through the door before us, as we were taking too long. We saw the good and the bad side of human beings. The time that you spend with a dying person is a reflective and frequently peaceful time. It’s a time to learn about yourself, but also others.
The simplest things become wonderful; Mark managing to eat some of his KitKat on his own when he was losing his ability to feed himself, and managing to walk a few steps, supported by Neil, while smiling throughout! It gave me the opportunity to see what’s important in life.
I know from being there with Mark and seeing the level of incapacity he suffered that I needed to take control of what I could in my own life. After he died, I updated my will. I am putting a power of attorney in place and am considering my strategy for eventually stepping away from the business. Although it’s not easy to think about illness and death, there are things we can do now to help our loved ones who are left behind.
Mark loved music and going to festivals, and therefore Neil decided to take him to the Upton Blues Festival last July. I’m glad to say he did manage to do it! It wasn’t easy but Mark was there with us and his friends for the whole of the festival and for my 50th birthday. He was eating chocolate cake the Saturday before he died on the Tuesday. I would say that if you know there is something a dying person would enjoy and you can physically cope with supporting them, then take them. For Mark, he knew everyone there, he held their hands and he smiled at them. What a great way to spend your last few days!
I know work is important, as we need to pay the bills, but make time for your friends and family and take holidays. I am amazed at the amount of times people who work for themselves say that they haven’t had a holiday in 10 years. It hasn’t got to be an expensive break, but I would recommend taking regular breaks.
Maybe you could think now about something you could do within your working life to give yourself a break and bring yourself some joy. Could you take an afternoon off and spend time on a hobby? Throughout the 14 years that I have been working for myself I have mainly managed to fit in a swim later on Friday afternoon and I know it does me good. Also we pick my niece, Daisy, up from school once a week. Is there something you could do now to make sure you take a break?
It is important to look after ourselves as small business owners. There was a recent article in the FSB First Choice magazine which stated that isolation is one of the top 3 challenges for the self-employed. FSB Commercial and Operations Director, Dave Stallon, says:
“Being a small business owner can be very lonely, with no one to share the responsibility and no one to talk to about concerns.”
It’s a good idea to surround yourself with people you can talk to: trustworthy friends, other business owners or a supportive networking group.
Take some time to think about your life now and your level of enjoyment and stress and think about any strategies you can put in place to make your life better. When you have spent time with a dying person it becomes much clearer how short life is and that we need to do something about our lives to make them as good as possible.
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