My father loved football but the last time we brought him over to our place to watch a game he stared at the screen for a couple of minutes before asking me when I'd bought 'that fish tank'.
It sounds funny but the realisation that he could no longer enjoy something that until then had been his only remaining pleasure in life was horrible.
That doesn't sound funny at all and, sadly, I can completely relate.
Back in 2015(ish) my mum was telling me that she thought there was something not quite right with my dad. For some time I dismissed her concerns, and mostly because whenever I saw him (usually of a weekend), to me, he seemed okay. Admittedly, a bit forgetful, but that wasn't anything particularly new (when he retired he drove a taxi for a while and at that time I used to go round and have breakfast with him every morning. When he left the house I'd never say 'bye' to him, because I knew he'd be back at least once for something that he'd forgotten, be that keys, notebook, moneybelt, etc). I just put it down to normal symptoms of advancing age. Eventually my mum took him to be assessed and he was diagnosed with Alzheimers, which was a huge shock for me in particular. From that point on it got gradually worse, starting with little things, like him repeating conversations with you multiple times in the space of half an hour, or asking how a "new job" was going, when actually, you started that job a number of years ago. I sat eating breakfast one morning and he walked over to make a cup of coffee, by filling the mug with cold water and placing it directly onto the gas hob. As it progressed though, it was genuinely devastating to be forced to watch this amazing, powerful, independent man, who had been my hero for my entire life, slowly shrinking before my eyes. To see who he was as a person gradually being chipped away at, day by day, until there was nothing left. Just a shell. Occasionally there were glimpses. A laugh, or a "watchya boy" as I walked in the door, that just for a second made me remember him and who he was. In 2016 we took him and my mum on holiday to the south of France, in a villa. I thought it would be a nice break for my mum, who had already been coping admirably with everything up to that point and in typical fashion, refusing to admit that she needed any help ("he's my husband, I'll take care of him"). We woke up on the second morning and my dad had forced the back door of the villa open and was nowhere to be seen. We were up in the hills outside Cannes, it was a red hot day and nobody there spoke any English. To say that entire morning was terrifying would be an understatement. Eventually he was picked up by a French firefighter and taken to the local hospital, confused and dehydrated. I spent the rest of the holiday sleeping in front of the door, and when we got home we literally nailed the big windows shut (we'd already had incidents of him climbing out and walking the 7 miles to a nearby village and his childhood home, which as time wore on, he was convinced was still where he lived).
Back to the quoted statement from Slippers, though. The last game that my dad and I went to was Wolves at home in the FA Cup, January 2017. We actually got into hospitality that day, which usually would be exactly the kind of environment that my dad would thrive in. He was incredibly social and football was his passion. So, we find ourselves sat on one of the big, round tables, with a few other blokes, some on a jolly, another couple with their young lads. As is the way, people were making conversation, asking what we thought the team would be, the result, all of the usual. And my dad didn't say a word. Not to anyone. Not one. That big, confident man I'd known, always the life and soul of any party, was visibly shrinking in his seat next to me. The ability to communicate and to function in a social setting no longer there, and confidence non-existent. On the way home I asked him what he thought of the game and he just smiled and nodded, nothing to add. Looking back, that moment crushed me probably more than anything that had happened up to then, because it was his passion. A passion that he passed onto me, which subsequently became something that we had always shared. And now, just like that, that was all gone. That part of him, erased. As time went on I would occasionally ask him if he'd seen our latest score, and he would inevitably say no, he hadn't, and feign interest as I tried to tell him about the game, as if to cling to that part of him for as long as I possibly could, or to revive it, I don't know, really.
In terms of help and support, though, it all felt extremely convoluted as well as expensive. Everything was funneled via our local council, who were actually helpful, but with hands tied, as with everything. There were various programs and support mechanisms that they steered us towards, but in terms of significant support for my mum on a day-to-day basis, there was very little, and the reason being that when they would ask "can he dress, wash and feed himself", the answer was 'yes', at which point the support was not available to him. All I wanted back then was for somebody to stop by on a regular basis, to check if everything was okay and that my mum was coping. I was doing that as well, whenever I could, but I'd moved away by then and was also working full time, which made it difficult. The support that we ended up with was a local volunteer coming to take my dad out for a walk with him a couple of morning a week, which was actually a positive thing all around, and a further morning/afternoon outing with a charity run group. There was also the option of some 'respite support' for my mum as a sole carer, which essentially involved my dad going into a local care facility for a few days, but this, from memory, was available something like twice a year. I think my mum needed that break, but she felt unbelievable guilt at even allowing for it to happen as well. We took my dad to ours for the weekend a couple of times, again, to give my mum that break, and I can honestly say that those were the most challenging, exhausting weekends I've ever had. I have twin three year old boys and they were/are nothing in comparison. After those weekends, the respect and admiration I had for my mum, in the way that she had looked after my dad every single day, almost solely on her own, and without a murmur of complaint, was unbelievable. What she did for him in those final few years was astonishing and I told her that whenever she would listen. I'm not sure what advice I would offer on this point, though, other than to speak with your local council and ask them to clarify exactly what support systems are available in your area, as I did. They should at the very least be able to confirm that, as well as likely costs, and support that would be available to help cover those. There are usually charities and local groups that meet in local areas that can help in terms of finding others in similar situations to talk to, or to allow the carer(s) of affected loved ones some temporary respite. If it reaches a point whereby full time residential care is necessary, that will also go via the council, as they will have access to a budget to put towards associated costs, and from there it becomes a question of whether you and/or your family are able to top that figure up or not. The answer to that question will determine what options are available. Our council covered £500p/w in residential costs, and the place where my dad was housed in the end charged £850p/w (we asked them whether that could be reduced at all and was told a flat 'no'), with us, as a family, covering the 'gap' payment. The other context with this is that my dad had already been placed in two or three other places by this stage, and had broken out of all of them (one of them not far from a main road), and the final choice was made as it was considered to be the only option where his safety could be guaranteed, so we had no other choices. It's absolutely scandalous how much it costs, and the fact that these facilities are all private, profit making enterprises, sickens me, to be honest. As far as I'm concerned social care should be under the remit of the NHS.
My dad eventually passed away in that care home in April, 2020, and the strange thing was, although I was obviously devastated, I'd actually been processing the loss for a number of years at that point, which, in a truly horrible way, was actually a blessing because there wasn't the shock factor that you often get with loss like that. At least that's how I felt.
The one thing that I remain eternally grateful for though, is that he never forgot who I was. In those last few weeks he was in the local hospital and I walked into his ward one afternoon and his face beamed as he announced to the room; "This is my son". I'll never forget that, and it's a moment that I will hold onto forever, as probably the final glimpse of my dad.
My heart goes out to anyone going through similar with their loved ones.
He has gotten worse since then and yesterday I took him to be screened to join a clinical trial for early-stage Alzheimer's. He has been accepted, which is obviously both good (it might help) and bad (they are reasonably sure he has Alzheimer's).
I'm truly sorry to read this as well, but hopefully the trial is a success and it helps to slow the advancement and/or minimise symptoms. Fingers crossed for your dad.
