It’s a knock-on effect Ray Fallan (Carer Involvement Lead, tide) with Helen Johnston (Sporting Memories Communications Manager) 17 May 2021 Alzheimer’s Society is calling for a broken care system to be cured, as Dementia Action Week 2021 (previously Dementia Awareness Week) turns its focus to carers and the care systems in England, Wales and Northern Ireland. Ray Fallan cared for her husband, James. James was 50 years old when he began showing signs of dementia. James passed away when he was just 56. Ray’s description of caring for James and what this meant for her and the wider family does not make for easy reading. But it does need to be heard. "I would like to say that the social care system is amazing,” says Ray. “But it’s not, it is very broken, fragmented and leaves people desperate in so many ways. This is why I campaign; I never want anyone to go through what we did. It is a slow journey trying to make change; however, I am confident that one day change will happen.” Ray’s journey with James led her to change her career, to one where she could support those living with dementia and their carers. Ray also writes of the benefits of and support by Sporting Memories Clubs for families. “I am very honoured to have been a host of a Sporting Memories group and I want to share with you the joy and laughter it brought to the members who came along.” On caring for James “Caring for James was the hardest thing I have ever experienced. It was so painful watching him decline. He had cortisol basil degeneration (CBD) and front to temporal lobe degeneration (FTD). Both very cruel illnesses. The memory is affected, but not until the disease has stolen everything else first. James had some level of awareness until the end of his life. “CBD begins with a tremor, very rapidly this expands to total muscle rigidity. His whole body became so stiff that even moving a finger was excruciating. Eventually he could not move, speak, swallow or see much. FTD changes personalities and James became paranoid, suspicious, angry and aggressive. All of these symptoms had to be cared for. I loved him and ached for each of his sufferings on a daily basis. “With each decline, my caring role expanded. I was exhausted both mentally and physically, but there is nothing you can do but care. I lost myself as well as the James that I married. The loss of choices, the loss of love and empathy, the loss of family and friends as my circle shrank and my caring role grew. I was only 47 when all this began. We had a new home, a mortgage and so the responsibilities of the carer become greater. The loss of my job, and therefore, the loss of a secure future, along with the worry of how I was to survive financially. The shared responsibilities became one responsibility, adding to my stress and anxiety. The loss of a future that James and I had planned. The prospect of being alone without James petrified me. All of this took its toll on me, and to this day I have PTSD.” On Sporting Memories and Tommy Throughout our 10 years of using the power of sport to tackle dementia, depression and loneliness – indeed every single week – we have seen the glimmers of light that our Sporting Memories Clubs can bring. Slithers of time that are that little bit easier for the participant and their family. It's a knock-on effect. Above all, so many of our members and their families find companionship. So very much needed when life seems to be shrinking and drawing inwards. Sporting Memories Club sessions brought Ray closer to her closer to her brother Tommy. Ray says of her group: “The group members were made up of lovely men who had some form of dementia, not all of them though. There were other men in the group who just felt isolated and alone. This included my brother, who sadly passed away in October 2020. The mix of the group members were very different, however, the bond and support they gave each other was quite incredible. The laughter rings loudest in my ears. The storytelling, teasing and happiness was and still is a complete privilege to have participated in. “Some of the group were non-verbal, but that did not prevent them from participating or engaging, because they were listening! Suddenly there would be a burst of laughter following one of the characters cracking a joke. They were expressing their joy. You could see and feel the happiness and isolation drifting away. “I was very close to my brother Tommy. I thought I knew him so very well. There was only a year between us. Tommy was born with spina bifida. This affected his confidence growing up and I was his guardian. I invited him along to Sporting Memories and was shocked to find that he had an extensive knowledge of most sports. I guess I didn't know him that well. “He was competitive in the quizzes, and in fact, was always in the winning team. He was so happy during these sessions, it brought us closer and I found our childhood competitiveness and teasing returned. “Thank you Sporting Memories, I now have very treasured memories of my brother and I in our adult lives. The groups bring so much emotion, laughter, connectivity and fun. This just was not there prior to these fantastic people joining the group and coming together. “I did not know anything about Sporting Memories when my husband was ill. Had I known, I would have had James at a group in an instant, he would have benefited so much. But what I can do is tell others about it, which I do. I signpost my members to Sporting Memories.” tide Ray’s professional roles is supporting carers of people living with dementia, working towards a world where unpaid carers of people with dementia use their voices, and society reflects and responds to their unique needs. tide (together in dementia everyday) is a charity that campaigns, raises awareness, gives support and raises funds. Sporting Memories Club Would you or someone you know like to join a Sporting Memories Club? Find out more about our Clubs. Could you volunteer with with Sporting Memories? Find out more about volunteering.