It’s hard putting into words the impact of the support my local hospice provided me whilst my mum grappled with end stages of COPD.
At the time, the enormity of decisions to be made and tangle of different agencies to contact and forms to fill and eligibilities to prove and difficult conversations to tackle (whilst trying to deal with the very real fact that mum would be taken from me at any moment ) felt like the scariest and most impossible mountain of needs.
My local hospice was a safe harbour in a storm. When I called I knew I would have someone who wanted to and could help. They understood and sincerely cared. As well as verbal care and guidance, practical support was also provided efficiently and compassionately. The hospice’s social worker provided benefit information and organised care-based finances, a nurse gained fast track referral to a care home in the last weeks, and mum’s lead consultant gave us answers in a way we could understand.
My mum, Diane Murray, died of COPD at the age of 53, leaving behind myself and my 19 year-old sister. As a single parent, my mum was fiercely independent and protective over myself and my teenage sister. For a long time she tried to keep the severity of her illness from us. The hospice helped my mum discuss her illness, her fears and the heart-breaking question of how long she might have left. As difficult as these conversations were, now mum has gone, I treasure my memories of them. These conversations gave me insight into what my mum was coping with, how she was feeling and how precious and limited our time together would be.
Mum was given the opportunity to attend day sessions at the hospice, meet others managing with similar daily battles, attend symptom-management workshops and gain alternative therapies. My sister, who was studying for her A-levels at the time was given counselling. As my mum’s condition exacerbated I struggled with the ways to care for her. The hospice advised me on the way I needed to ensure my mother could make her own decisions and have control over her own treatment and care. With the severity and effects of the illness being out of mum’s control, what control can be had is crucial.
Mum’s autonomy
At this time and in so many others, the hospice’s supported me to re-focus and realise mum’s own wishes and desires were key. They helped ensure mum had the control over what happened and in doing so made her last weeks that little bit less scary. I would’ve never forgiven myself if I had not been given this advice and had to look back on how my care had increased the discomfort and lack of control mum experienced in those last weeks.
The hospice supported me and in doing this helped me support my mum in a more informed and considered way. I am so grateful for the help they provided in allowing me to do this. What I remember most is the kindness and concern. In a short conversation I had the feeling I was being looked after and each conversation was like a warm hug. When mum died, we were given the chance to meet and commemorate mum’s life. As a small family of three, the loneliness of grief sometimes felt suffocating. Being surrounded by life carrying on as normal was inevitable but felt (irrationally) cruelly indifferent. In inviting us to memorial services, memorial walks, meet-ups we were given the message that mum’s death counted, it mattered, we mattered and we were not alone. We were surrounded by others in their grief. It is only looking back with hindsight I realise how important this was in helping me cope with, and find the way to live with grief. It gave me the experiences to begin realising that my deeply personal grief was also universal and something I shared with so many others. I was given the chance to discuss my mum with staff: staff I had only talked to on the phone remembered me and made the effort to come and talk to me and ask how we were all coping and share recollections.
We were a transitory family and, once mum left Northern Ireland we moved about throughout my childhood. Since moving to Cardiff in my early 20’s, I have felt a sense of belonging. I love Cardiff, it is where I met my husband and it is now my two daughter’s birthplace and home. I want to be able to contribute to the amazing Welsh capital that has adopted me and given me a sense of belonging.
The City Hospice is the Welsh capital’s only hospice and provides such invaluable care for those with life-limiting conditions and their families. Hearing about so many of the family members who carry on visiting and contributing to the hospice has made me realise what a massive impact the hospice has had on their lives and the gratitude they feel. Visiting the hospice and meeting the volunteers who lend their time to help others in their community was humbling and inspiring. Life feels a lot warmer, lighter and less scary when we are able to accept help and help others in return. I’ve accepted help and, in my own way, I’d like to be part of giving back and being a part of the type of community mum’s hospice showed me, It makes me realise we will all at some point need to deal with grief and we can’t do it alone. We need others and others need us.
I was struck by the kindness of the staff and volunteers who helped my mum and I could see the same thing in this hospice and I realised without this kindness the experience of those suffering life limiting illnesses would be a hell of a lot worse.
I want to fundraise for City Hospice, a charity who give people the opportunity to have as much control as possible over where they live, to feel in control, comfortable and surrounded by their loved ones and the life they have built around themselves in their own home: if that is what they wish. Life and the time we have is so precious and hospices help make the most precious time better.
Having a loved one being taken before their time has made me realise how precious our time is and how important it is to fill with what is important to you. Being able to make a difference to other is one of those things.
Supporting City Hospice
I want to raise enough to ‘Donate a Day’ of nursing care for those with life limiting illnesses: to be provided with care to manage at home. The idea of being able to raise enough to provide a day’s care would mean so much to me. I am going to raise money by running my first and last marathon: Newport Marathon 2020.
Wear my City Hospice running vest with pride
I am looking forward to being able to use running the Newport Marathon to raise money to help others, and wearing my City Hospice running vest with pride. I am looking forward to raising awareness of the fantastic work the hospice and all hospices do. I ran during mum’s illness, and once she died I felt profound guilt at the time I ran and was not with my mum. I now realise running was my own coping mechanism and helped. Running helped me during mum’s illness and I want to use it to help others too. I am looking forward to seeing what I can achieve when I know I am determined
Preparing for the Newport Marathon
I am not looking forward to the dark, cold and early morning training runs after sleepless nights with my baby daughter and before days at work. I am always trying to distract myself from uncomfortable feelings and this includes my grief. As my training runs get further and my time running gets longer I will have more time to think and I know there will be some difficult thoughts and feelings to contemplate and a bit of therapeutic crying. I am not looking forward to the doubts and inevitable, ‘how will I ever get my legs round 26 miles!!??!’
I’ve had to make lifestyle changes to have the energy for training: wine and pizzas are off the menu. Wine on a Saturday night has been replaced with early morning Sunday runs (there’s no way I could do both). I physically couldn’t do the training with my much loved weekend wines or without something healthy to give me energy. Anybody who knows me knows how much I love wine but I know it’ll be worth it. I also know it’ll be hard balancing looking after my two, young daughters, working and fitting in marathon training. Especially during the winter when I usually go into hibernation mode.
If mum’s heart could run a marathon every day I can do one
In my wildest dreams/nightmares I couldn’t have even contemplated running a marathon. I always thought of marathon runners as another race of odd humans!
I was training for my first Cardiff Half where mum was going to cheer me on during her 54th birthday, but mum didn’t make it and died two weeks before it began. I couldn’t run the race and thought I never would run again. This year I completed it. It was a huge personal challenge to run a race without mum (and any race at all!) but I did, and as I ran I couldn’t help but notice all those running to raise money to help others. I saw City Hospice shirts on my sweaty run. I never thought I could complete a half and never in a million years would I have considered running the full Newport marathon: that’s something that other people do. The doctor told my mum that her heart had the strain of someone running a marathon every single day. If mum’s heart could run a marathon every day I can do one.
To support Carly’s Newport Marathon fundraising, please visit www.justgiving.com/Carly-MurrayDarney
