I was heading home from work one evening in December 2012 when I received a call from my dad. We had an okay relationship. We were close but there was still an odd kind of distance been us, some kind of barrier that we couldn’t quite work around.
When my dad calls it never tends to be for good news. He isn’t really the chatty type and rarely rings when there isn’t something going on in our lives. More often than not, he’s the harbinger of death, calling me to tell me who’s passed away from our extended family in Yorkshire. I still get a bit worried when I see his name come up on my phone.
We both briefly said hello. He asked if I was at work and I said no, I was on the bus heading home. “Okay, he said, I’ve got some news for you son……”
I waited to find out who’d passed away.
“I’ve been diagnosed with Alzhiemers.”
I was stunned. He’d been having a few odd episodes. He’d had instances where he’d forgotten where he’d parked the car or he’d suddenly realise he wasn’t sure where he was going. He’d forget he was cooking and left things in the oven until they’d burnt. He put washing powder in the toilet rather than the washing machine. He starting buttering a plate rather than the toast he’d just made. It stopped being funny and started becoming aconcern. Things were just getting that bit worse for him.
I was taken a back. My dad was in his early sixties, not someone who was old. When you’re younger you almost think of your parents as being immortal. You slowly see changes as they age but they’re so subtle you don’t understand the one inevitable fact that we are all growing older. Also, when he’d had the tests the doctors discovered signs of damage on his brain, caused by several mini strokes. He’d not even realised he’d had them and they had probably occurred in his sleep. Even more things to worry about.
It took me a while to understand my dad’s illness, accepting it has taken a hell of a lot longer. When I talked to my counsellor about it a few months ago he said something that stopped me completely in my tracks, that what I’m experiencing is grief. The fact that we have to watch aspects of him slowly slip away, that we know we are going to be robbed of things in the future. I’m grieving over what my dad is going to lose as well as the fact that we will eventually lose him too. It’s hard to prepare yourself for anything like that.
I think it’s fair to say that for a while my dad struggled too. After the initial ‘I’ll be okay’ attitude, the realisation set in. I can’t begin to comprehend what it’s like to be told that everything will start to become unfamiliar. People, places, memories. Aren’t memories our most personal, private treasures? Each one is unique and nobody will ever have the same as you. They go to make up and shape who you are. Alzhiemers not only takes these from you, but they take away your identity. It takes the very core of what you are away.
Mental illness. It’s a cancer of the soul.
Part of the thing my dad struggled with was accepting it. Doing that proved to be hard. He came from a generation where you didn’t talk about things like that. You got on with it. He was a pitman until the government robbed us of the industry. You carried the world on your back and you tried to move on. He never talked about the hardships of the miner’s strike. He never talked about his dad dying. He never talked about how he felt about us. He was a man from that generation that meant you just kept quiet about things. He kept things very close to his chest. To accept it would mean he would after to talk about it, about his feelings and his fears, and that was a sign of weakness.
He was diagnosed with depression not long after that and started taking medicating for that too. Understandable really and something that wasn’t unexpected. But what was unexpected was what happened next. And I’m sure all my family will say it took us by surprise.
My dad started opening up and talking about it. And not to just us. To total strangers. In large numbers.
He started going to support groups and discovered that he was able to talk about others about what he was going through. My dad was approached to become a spokesperson for alzhiemers awareness and he took the challenge head on. It was part of his way of dealing with it, of trying to fight it. He started speaking to groups to help educate people. He had radio and newspaper interviews (you can read some here and here). He had taken something that frightened and worried him and found an aspect of it that he could control. He had gone from someone who liked to keep their life private to someone who had embraced what they were and were not afraid to be open about it. His attitude seemed to completely change.
(As an aside, I’d like to point something out. Although my dad had talked about it to me, to read in a newspaper article that your father has seriously considered killing himself over this is still heartbreaking. My dad found a way to release himself from that but how many others haven’t?)
My dad has even gone out to people who’ve recently been diagnosed with dementia to talk to them and reassure them that the diagnosis isn’t a life sentence. You can lead a relatively normal life. He still drives, he still cooks, he still goes to suffer watching Sunderland play football. He tries to live his life the best way he possibly can. He’s developed a very dark sense of humour. The meds help fight it but we all know that at some point they won’t be aaffective anymore. I dread that day and hope it’s in the far distant future for us all. In the meantime though, we try to keep things as normal as we can.
We’ve opened up to each other more and more of late. After I published my first blog he came over and we talked for about two hours, just the pair of us. About depression. About dementia. About how we try to deal with these things. About being open. About what we’re afraid of. About the lives we’ve had, the lives we live now and the lives we could possibly have.
I’m going to do a sit down chat with him at some point soon and record it. I think he’s a great example of taking something and doing something unexpected with it. Also, it means I’ll have something, a record of his story, to pass on to others and also to remind myself:
No matter what happens, there is always hope.
The title of this volume of my blog comes from ‘Alive’ by Pearl Jam, which you can find at Pearl Jam – Alive (Live). It’s a song based around the person he thought was his father being revealed not to be him, and that his real father had passed away. To me, it’s become a reminder, to reach out and be there for the ones you love while you still can.
If you’d like to talk to me further you can drop me an email at firstname.lastname@example.org. Also, I’ve created a closed support group on Facebook, also called The Order Of The Dog, where you can come and find kindred spirits who suffer from mental health issues or just want to help support others. Finally, please feel free to share this with anyone or anywhere where you think it might help.
The Order Of The Dog.