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The end of life conversation: “I want to wear colourful clothing at my funeral”

Author: Kay Taylor
10 May 2017

Catherine Nelson was diagnosed with COPD (chronic obstructive pulmonary disease) in 2002. Here she talks about coming to terms with planning for her end of life wishes in support of Dying Matters Week.

The 70-year-old mum of four and grandmother of six has had a busy life and career, having owned her own hairdressing business, worked as a driving instructor, cared for people at the end-of-life in the community, and qualified as an aromatherapist.

Her condition requires her to take antibiotics to combat chest infections and steroids to help with her breathing, but each have side effects like hair loss and fatigue. She gained more confidence and started to understand more about her condition after attending a 10-week programme at St Catherine’s Hospice in Lostock Hall, Preston. It also gave her the opportunity to speak to people living with similar respiratory conditions, as well as the charity’s specialist doctors and nurses.

Talking about her end of life wishes and funeral arrangements was difficult at first, but she has gradually come to terms with her condition both practically and emotionally. She is learning to adapt her lifestyle to cope with the side effects of her medication, and is now more comfortable about opening up to her family about her experiences and wishes.

“I want to wear colourful clothing at my funeral and for my ashes to be scattered in the river at Appleby; that’s where my heart is.

I went through about six months of anger, wondering why something like this had happened to me. I have been through all the stages, and sometimes I still feel angry, but I can control it now.

I have come to terms with my condition. It was hard at first, especially planning for the future and talking about things like making a will and funerals. It was quite painful to do and I kept saying "I will do it tomorrow" – it felt like a huge obstacle.

But it gets easier once you make a start, and you begin to think about things like music at your funeral and what you want to wear. I am so glad that is all in order now.

I have been going to Appleby for years for the gypsy fairs, and I have told my partner Michael that I want my ashes scattered in the river there. We have visited it together and he knows I want to wear gypsy clothes and make-up – that is just me. It is good to know that my wishes will be granted, and it eases the pressure on him and my children as well; they know they are doing what I want and they do not have to make those kinds of difficult decisions themselves when the time comes.

The worse thing about COPD is the fatigue. People really do not realise how much it can affect you. You can be ok one day and feel good, and the next day you suddenly go downhill.

I was a very active person so it has hit me hard. It is difficult to plan ahead, especially things like trips away and holidays, because you just have to take each day as it comes.

Things which you normally do without thinking can sometimes be a real struggle or impossible, sometimes I cannot pick my three-year-old granddaughter Abigail up for a cuddle, and that really upsets me.

I can see how people could easily get depressed, it is very frustrating, but you have to fight it and stay strong. It is a constant battle, but I try to stay positive and try to keep looking my best, so that my family will not notice as much of a difference in me.

It feels good to off-load. It is different speaking to someone who is not personally attached to you, you cannot always have those conversations with your family, or be as honest about how you are feeling and have a good cry, because it is upsetting for them as well.

I do not know how anyone can ever really accept an incurable condition like this, but you learn to come to terms with it and adapt. I have only really started to come to terms with it over these last three years, from working with doctors and the hospice. You really have to take all the help and support which is available to you.

I do not feel sorry for myself, and I am determined to live my life to the full. You do have to know your limits though and accept when you need to rest. You cannot wish to feel good all the time, but you need to make the most of your good spells.

I feel proud of everything I have achieved. I even got a certificate for attending the St Catherine’s course which made me feel really good. I did not think I would be able to achieve anything else at this stage, but it just goes to show that it is never too late.”

For more information about the hospice visit St Catherine’s Hospice. To find out more about Dying Matters Week visit Dying Matters 

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