Robert's story

Three years ago, Robert began to notice a persistent twitching in his muscles, but thought nothing of it.

“I’d watched a film of a lady in America with ALS,” remembers his wife Debbie, referring to Amyotrophic Lateral Sclerosis (the American name for Motor Neurone Disease), a progressive neurodegenerative disease. “I’d made a connection with the twitching muscles and, as a student nurse myself at the time, I knew Robert had to get it checked out for peace of mind.”

At the same time, Robert’s speech started to develop a slight slur and he and Debbie realised there was a problem. Robert’s GP referred him to a local hospital where he was directed on for further tests and consultations in London.

“We had to wait over two months for the results from all the tests,” Debbie explains. “When they eventually told us they thought Robert had Motor Neurone Disease, I simply cried my eyes out and we were ushered out of the room in shock, feeling bereft and alone.”

Robert’s daughter, Katie, who was 14 at the time, just remembers thinking her dad was acting like he was drunk a lot!

“Robert hadn’t wanted to tell Katie much about it until we knew for certain what we were dealing with,” Debbie tells us. “Even after diagnosis, Robert was insistent that we didn’t tell anyone at work and we just carry on with things as normal. Of course, we knew we had to tell Katie. But she’s very much like her dad and neither of them really wanted to talk or think about it.”

Shortly after celebrating Robert’s 50th birthday with a surprise party at his brother Michael’s house, he and Debbie brought forward their wedding and got married in Swansea in September 2006. Debbie remembers, “As a nurse, I knew about hospice care, but I didn’t know how to get involved or if it would be appropriate for us. So I just called Phyllis Tuckwell Hospice and asked them for someone to talk to.”

Rebecca, a Community Nurse Specialist (CNS) from Phyllis Tuckwell Hospice, who visits patients at home, came out to meet Robert, Debbie and Katie to discuss how the Hospice might be able to help. After that, they were scooped up into the Hospice family and began to access a whole range of services, from physiotherapy to complementary therapy and counselling.

“I hate hospitals and my dad and I thought the Hospice would be a horrible, dark and depressing place,” Katie says. “But when I came to visit, I loved it! It was friendly and warm - it’s just like going to someone’s house. I think it’s really important for people to visit the Hospice before they judge it, so they know what it’s really like.”

Katie, Robert and Michael did a sponsored skydive, raising nearly £8,000 for the Hospice and the MND Association. They enjoyed the day so much with a huge crowd of family and friends that they are considering making it an annual event!

“It feels good when you’re here,” Debbie says warmly. “The support is phenomenal in every way and the service provided is seamless. Rebecca has been like a rock for us, we can call her any time we need information or advice, no matter how big or small. It really feels like we’re part of the family here. I remember worrying so much about the future – if only I’d known that we’d be looked after the Hospice! We grew so much closer as a family because we could relax knowing the Hospice was taking care of things. We cherished every day, never felt alone and they took away the worry, I just couldn’t imagine going through our journey without the Phyllis Tuckwell Hospice’s support. Thank you just doesn’t seem enough…”

Sadly, Robert passed away on 29 November 2008. He was a much loved husband and dad and will be deeply missed by his family, and the Hospice staff and volunteers, but Debbie and Katie still have contact with the Hospice to help them deal with their loss.