“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.”
Talking about her end-of-life wishes and funeral arrangements was difficult for Catherine Nelson when she was first diagnosed with COPD (chronic obstructive pulmonary disease) in 2002.
Over the years, she’s 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.
Catherine, a 70-year-old grandmother-of-six, gained more confidence and started to understand more about her condition after attending a dedicated 10-week respiratory programme at St Catherine’s Hospice.
This week, she is speaking out about the importance of having discussions with loved ones and healthcare professionals about her personal end-of-life plans, in support of Dying Matters Week.
The national awareness week encourages people to discuss issues such as making a will, organ donation, funeral plans, how they would prefer to spend their final days, and how they hope to be remembered.
Living with a life-shortening, incurable condition like COPD, Catherine knows all too well how difficult it can be to make such significant decisions.
“I went through about six months of anger, wondering why something like this had happened to me,” she recalls. “I’ve been through all the stages, and sometimes I still feel angry, but I can control it now.
“I’ve 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’ll 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’m so glad that’s all in order now.”
She explains: “I’ve been going to Appleby for years for the gypsy fairs, and I’ve told my partner Michael that I want my ashes scattered in the river there. We’ve visited it together and he knows I want to wear gypsy clothes and make-up – that’s just me.
“It’s good to know that my wishes will be granted, and it eases the pressure on him and my children as well; they know they’re doing what I want and they don’t have to make those kind of difficult decisions themselves when the time comes.”
COPD causes breathlessness and fatigue as the lungs’ airways are narrowed, which has had a detrimental effect on Catherine’s busy lifestyle.
“The worse thing about it is the fatigue,” she says. “People really don’t realise how much it can affect you. You can be ok one day and feel good, and the next day you suddenly go down-hill.
“I was a very active person so it’s hit me hard. It’s 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 can’t 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’s very frustrating, but you’ve got to fight it and stay strong. It’s a constant battle, but I try to stay positive and try to keep looking my best, so that my family doesn’t notice as much of a difference in me.”
Attending the programme at St Catherine’s was helpful for Catherine, not only because she learnt about new ways of managing her symptoms, but because it also gave her the opportunity to speak with people living with similar respiratory conditions, as well as the charity’s specialist doctors and nurses.
“It felt good to off-load,” she says. “It’s different speaking to someone who isn’t personally attached to you; you can’t always have those conversations with your family, or be as honest about how you’re feeling and have a good cry, because it’s upsetting for them as well.
“People might think that they don’t need that kind of professional and peer support, but it’s invaluable. It’s emotional support and practical advice, and you can share your thoughts and ideas with others.
“It’s helped me understand things about my condition which I wish I’d known years ago – there were educational talks from dieticians, consultants, and physiotherapists, who talked about lung conditions and fatigue, and how to manage it.
“St Catherine’s is a sanctuary and gave me reason to think that my life isn’t over.”
Catherine, who lives in Tarleton, was referred to the programme at the hospice by her doctor at Royal Preston Hospital, after explaining that she wanted more support to manage her condition, and to discuss the restrictions it has on her life.
A former smoker, she has suffered with chest infections all of her life, and thought it was just her asthma getting worse, shortly before she was diagnosed with COPD.
She takes antibiotics to combat the chest infections, and steroids to help with her breathing, but each have side effects such as hair loss and fatigue. She also uses a nebuliser and inhaler.
“I don’t know how anyone can ever really accept an incurable condition like this,” she admits. “But you learn to come to terms with it and adapt. I’ve 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.”
She adds: “I don’t feel sorry for myself, and I’m determined to live my life to the full.
“You do have to know your limits though and accept when you need to rest. You can’t wish to feel good all the time, but you need to make the most of your good spells.”
The mum-of-four has had a busy life and career, having owned her own hairdressing business and worked as a driving instructor, as well as caring for people at the end-of-life in the community, and being a qualified aromatherapist.
“I feel proud of everything I’ve achieved,” she says. “I even got a certificate for attending the St Catherine’s course which made me feel really good. I didn’t think I would be able to achieve anything else at this stage, but it just goes to show that it’s never too late.”
Lynn Kelly is director of knowledge exchange services at St Catherine’s, where she heads up the team tasked with sharing the organisation’s specialist skills with others, and raising awareness about end-of-life issues in the community.
She is grateful to Catherine for speaking out and sharing her experiences this Dying Matters Week.
Lynn said: “Catherine is a fantastic example of what can be achieved when people open up to their loved ones about their wishes. We completely understand that these conversations can be difficult and emotional – but what we hear time and again from people is that they, and their loved ones, feel so much better when things are out in the open.
“St Catherine’s is proud to be part of this important awareness week which provides a national talking point around issues such as funeral planning and making a will – topics which can still be seen as a taboo.
“We hope people will be inspired by Catherine and her family and use this week as an opportunity to take some time to talk to their nearest and dearest about what is important to them. And once arrangements are in place, people can focus on spending their precious time with their loved ones, making meaningful memories.”