‘I feel broken through the lack of support’

Christine Gilliver successfully petitioned the PFA for financial support to help meet the care costs for her husband Allan, who played for Huddersfield and Bradford City and now lives with dementia - only for it to be abruptly terminated at the point he needed full-time care. Here, she discusses her heartbreak that her beloved ‘Gilly’ now needs residential care, the financial strain this brings, and why Head for Change’s financial intervention is invaluable to families like hers

I distinctly remember reading a piece in a newspaper in November 2020 and I was absolutely incensed by it. The PFA had the nerve to say they were offering support to former players and their families who were now affected by dementia - my Gilly had been diagnosed in 2011 and we’d never had a thing. I’d been in touch previously and had been turned down for support; there was nothing for people with dementia, apparently.

So after reading this piece, I got in touch again and they gave all kinds of excuses about how they didn’t have contact details for all former players, how the information as to who was receiving help was confidential. But after struggling so much for years to care for Gilly, I needed some help for him. We both did. Dementia is the most horrible, cruel disease. To see someone so precious to you decline like my husband has, to the extent he is losing control of his mind and body, is worse than I can ever put into words. I try my best to be everything he needs but it is destroying me. I have been through times where everything seems completely black, I can only see darkness. It has left me completely on my knees. So when the PFA told me in January 2021 they would support one week of respite care every two months, I thought it was amazing. By January 2022, as Gilly’s condition got worse, that increased to seven days a month, thanks to support from Dawn Astle. It helped so much, just that break was such a relief. We’d spent a lot of our own money on adapting the house so he could still get around, but things were declining. I knew they were, . but I just didn’t want to accept I couldn’t care for him on my own But then I was taken into hospital with an angina attack and everything changed. I’d been struggling with a sciatica-type condition for a long while, which made things very difficult in caring for Gilly, particularly when he now needed help to get out of his chair and support to walk any distance. If he’d have fallen, I couldn’t have picked him up. But after I went into hospital, I was forced to realise I couldn’t do it anymore. My heart wanted to continue to so badly - but my head, and my children and my sister, who were so worried, made me realise the best option for everyone was to look at fulltime residential care for Gilly. But while the respite care had been such a welcome relief, for which I was so grateful, the support from the PFA now stopped. There was no help anymore. The option was to find a care home within the local authority budget, and the PFA told us they wouldn’t pay top up fees. Everything we’d had was now just cut off so suddenly. We now had to look at how to finance care. All the money we’d saved and Gilly’s private pension was now going on his care. We’d never lived extravagantly, never had fancy holidays or cars, but now this was our life. Rather than the adventures I hoped we’d be having in our older age, he was going to be in care, being looked after by someone other than me. The care home are wonderful but they don’t know him like I do. When I go to visit him and his hair has been combed the wrong way, or there are someone else’s clothes in his wardrobe, such little things can often leave me absolutely bereft. My heart breaks every single day and the guilt I feel at him being in there is like a millstone round my neck. The loneliness feels almost unbearable sometimes. The financial strain is very real. I get so upset that, because of him playing football and doing his job, we’re now having to spend his private pension just so he can be looked after. While respite care was very welcome, the nature of dementia is that it is degenerative, so of course anyone living with it will get worse and their needs increase. For there to be no support with residential care for when this time comes is just awful. When Head for Change offered us some support, I couldn’t believe it. I’d given up asking for anything more from anyone, because once Gilly went into residential care, they didn’t want to know. But Head for Change did. Everyone there understands because they live this too. Judith Gates, whose husband played at a similar time to mine and who is now in a similar situation to Gilly, understands exactly what I am going through. Just finding someone who understands is a relief in itself, but for them also to help us with the very things they know we need is amazing. The way former players of my husband’s age are being treated is truly awful - these are the people who have made the game what it is today and who gave so much joy to so many football fans over the years. They don’t deserve this - they deserve so much better. The powers that be no doubt want to sweep a lot of things under the carpet, but my Gilly and so many others are the living reality of this situation - and families desperately need help now to cope.