25^th September 2023, was the first anniversary of the death of Elizabeth Coupe, mother to Emma and Christopher and wife to Peter Coupe. Elizabeth was 70 years old and had lived with MND for 18 months. She was supported at home by Creative Homecare before she died peacefully, in Strathcarron Hospice, which is where she wanted to be.

We are grateful to Emma and Christopher Coupe for sharing their story.

Mum was supported by Strathcarron’s multidisciplinary team in the community as well as in the hospice for a number of months. She unfortunately experienced excruciating pain when touched and we believe this is not a common symptom of MND, so having the professional care and support of the Strathcarron team meant they could get mum’s pain under control.

When our mum was in the In-patient unit at Strathcarrron, we absolutely got to be her son and daughter. As when she was at home, sometimes the lines between the role of family  member and ‘carer’ were blurred. The nursing teams in Strathcarron also managed to get mum comfortably into a lovely bath which is something mum absolutely loved and missed.

Emma said, “my mum was a nurse and she also worked in the community at Strathcarron Hospice many years ago so I think the connection she made with her fellow nurses whilst there was made deeper. When my mum left to go home after her time in the IPU, the nurses lined the corridor and clapped as she waved them out the door. This meant so much to my mum and what a wonderful memory for me too.

Mum was very clear she didn’t want to go into a care home so Creative Homecare supported her at home for a number of months. The Support Workers actually received specialist MND training, including how to use the new hoists we had to have put up in mum’s home. We were incredibly touched by their attention to detail with mum.

Dad, Christopher and I were mums Power of Attorney, so we were working to do everything to ensure she could stay at home for as long as possible and I would encourage everyone to have these important conversations with their loved ones, as we did with mum. We were very close but it is still difficult to discuss wills and wishes and I was so grateful we did.

Her ‘event day’ (we didn’t want to call it a funeral) was everything we and mum discussed. She wanted everyone to wear bright clothing and wanted her favourite music from Collabro. It was a real celebration of her life and it was a beautiful, special day.

When mum was in the Hospice IPU, she spent time with the Creative Art Therapy Team and she made a memory box for her family. We had no idea she had done this until she died. It was incredibly emotional going through the box, looking at everything she had made. The box included bright coloured scarves that she made herself and we wore them proudly on her Event Day as was her wish.

Our lives will never be the same again without mum in it. She was our best friend and caring for her became our life for the duration she was unwell but we know she absolutely would have done the same for us. It was a privilege to care for someone so special as our mum, we were pretty inseparable anyway and the strong bond we had with her is instrumental in how we go about our daily lives and honour her memory.

Emma said that, after Mums MND diagnosis, I was fortunate to meet so many amazing people from MND Scotland and Strathcarron Hospice who helped us.  A very special person that I met was Rab who has been a rock of support to me. “It’s perhaps an unusual story, or maybe not? but being bereaved and living through grief is such an intense and concentrated period of time. Feelings and emotions are raw and time is long.

Rab’s wife of 33 years, Christine was also in Strathcarron Hospice’s IPU at the same time as my mum. Mum and Christine were in the same ward and both were nurses, they all got know each other very well. Christine’s sense of humour made mum laugh and it was nice to hear the stories she would tell us when we went to visit. Rab cared for Christine for a long time and when she was in Strathcarron he visited her every day. If there was an occasional day that, due to work commitments we were unable to visit mum, we knew Rab would be there visiting Christine. Rab would always have a chat with my mum and being the person mum was, she provided him with some emotional support that he needed.   The caring nurse that mum was never left her, even in her own illness and to have someone there that she could chat with was comforting to us. Rab was devastated when Christine died and being in Strathcarron it was really tough to watch families lose their loved ones.  we were also very aware that it was only a matter of time before loss was coming to us and knowing what lay ahead for us as a family, Rab maintained his support to us.

When mum went home, Rab visited and him and I started to build a friendship and through the emotional months that lay ahead, we met regularly for a walk or coffee or just to have a cry and it really helped that he was going through a similar experience to me. We were both overwhelmed with grief but found comfort in talking and sharing our experiences.

Some days are difficult but as Rab  says, “we want to live, we’ve had enough heartache”. I totally agree. I know my mum was fond of Rab’s gentle character and she would be happy to know that I have someone in my life who cares for me.  There is comfort that we all met and got to know each other at Strathcarron, my mum, Christine, Rab and our families. We also believe that his wife, Christine would’ve been happy for him too”.  

Both Emma and Christopher said that, “Strathcarron Hospice is such a lovely place, beautiful surrounding and the people there are so kind and this made each visit that wee bit easier”. Although we were living through such awful times, there’s so much joy comes when we walk back through those doors too. It’s so hard to describe.

Emma said, “Since mum died, we’ve consoled each other through our own grieving moments and we continue to live our daily lives as mum would have wanted us to. Christopher, Dad and I have purchased a camper van and Rab and I plan to commemorate both mum and Christine’s memory with a climb to Everest base camp on the 14th September next year for Strathcarron Hospice and MND Scotland. We hope to raise as much money as we can for them both”.

If you are recently bereaved or grieving: Bereavement Information and Support

Our Support Line is available for advice and a listening ear: Live Your Life Team

You may find comfort in meeting others within your local community? Strathcarron Snowdrop Cafe