When I was pregnant with Bear, it was impossible to imagine how life would become. I was hanging up the little bodysuits to dry for the first time when it began to dawn on me that I was going to have an actual baby. I know it sounds daft, but there’s a world of difference between a theoretical baby and a real one.
I had a similar experience this evening. Dad is at Auntie’s this week and we have been talking about him, how we manage and how we might manage as his condition deteriorates. I went into his room to check for washing earlier and came down clutching a jumper. As I held it close to me, it dawned on me that the opportunities to do these things for him are diminishing. Every day, people ask me how he is. I am able to reel off what is happening. How he really is and what we expect to happen next. I am so caught up in the practicalities, spending time with Dad and making sure that he is happy. I forget the temporary nature of the situation. The temporary nature of life itself.
While I can, I forget that one day I will be left holding the jumper.
Sometimes I wonder whether we’re doing the right thing for Dad. Would he get better care somewhere with properly trained people available 24×7? Our home doesn’t automatically accommodate his changing needs. It takes time. If he’s in pain it can take us a while to get the right help. We can’t be with him every second of every minute of every day. Even when we’re at home, we might be helping Bear with homework, making food, halfway upstairs with a pile of washing, or in the shower.
This afternoon I was sitting with Dad. He knows he’s dependent on us. He thought it must be difficult. It’s hard to explain but it’s a bit like bringing Bear home for the first time. I wasn’t trained or qualified, but I knew instinctively how I wanted to care for him. Mr. Invisible and I made up the details as we went along but basically we didn’t want him to cry or be distressed. It’s the same with Dad. I’d rather he was in our home with people who not only love him but know him. He wants to be here too. So I guess we are doing the right thing for Dad. At least for now. But it doesn’t do any harm to keep asking. Just to make sure.
My Dad was 40 when I was born. I was almost 40 when Bear was born. I sometimes wonder if I am seeing them both through a weird mirror. Is Bear anything like my Dad was at age five? Old photographs give the nod, but they are unreliable witnesses. Even if Grandma were alive to tell me, the passage of eighty years might distort her vision. Will Bear be anything like my Dad when he is 85? They have some personality traits in common. I probably have them too. This is where it gets complicated. I am the mirror, but I am also a link in the chain. This is my story too. But our stories are not the same. I don’t look at Bear and see myself at his age. We share some of the same passions: teddy bears, books, building things, but he is not me. He has his own thoughts, his own dreams and desires, his own fears, his own soul. His life will be a mixture of the things he chooses and the things he chooses to do about the things he can’t choose. (I’ve just got back from the Donald Rumsfeld school of plain English!)
Dad has incurable cancer. It was diagnosed four years ago. Three and a half of those four years were ‘healthy’. The last half has been a challenge. But in the scheme of things it’s not that bad. He isn’t in constant pain. We can still talk about stuff and have a bit of a laugh (as long as it’s timed correctly around medication and exertion!) So what does ‘dying’ mean and is he doing it? Scientists can explain ‘dead’ and ‘alive’ pretty well, but ‘living’ and ‘dying’ is the stuff of philosophers, poets and those on first name terms with Mortality.
Maybe it’s about now. Maybe ‘living’ is about being in the moment. Not just being there, but inhabiting that moment and making it our own. Forever. Once we’ve been in a moment, it’s too late for anyone to take us out of it. Once it’s passed us by, there’s no way of getting back into it.
So as long as his medication has kicked in and he isn’t between places, Dad chooses ‘living.’ Long may it continue.
It’s almost a week since my last post. And what a week! We had a holiday club for children (I was a volunteer), the Olympic Opening Ceremony (I was transfixed) and a Family Fun Day today (I was doing too many things!) It’s a struggle to do all this stuff with Dad. He was at Auntie’s until Thursday evening, and I was already done in! I should be getting up-to-date on my own jobs and re-charging my batteries a bit when he’s at Auntie’s. But this time last year he was walking to places and playing cricket with the kids, so I can hardly blame myself for having said yes to stuff. Without Mr. Invisible I couldn’t have done it. He helped Dad with the morning routine yesterday while I was at holiday club and again this morning when I was setting up the Fun Day. I think my world needs to shrink a bit.
Dad and Bear and I watched the opening ceremony of the Olympics last night. It was a once-in-a-lifetime opportunity and we have been waiting years for it. Just as the seven young athletes were in position to light the copper petals, which would combine to form the Olympic cauldron, Dad decided he needed the loo. Between the walking frame and the stairlift, I managed to get the gist of what was happening. And in the modern age, there are plenty of opportunities to see it again. So remind me, why did I stay up for it? That it’s all happening just along the road might have something to do with it. I’ve never taken any notice of the Olympics before, but now I’ve got Olympic-coloured nails and am well on the way to getting the total fever! Actually I love it. I love the hype, the atmosphere, I love that Bear is so engaged with it. I love that I can’t go anywhere without seeing an Olympic cycling team in training or an Olympic volunteer on the way home from a shift.
Anyway, Bear is in my bed now. He woke up an hour ago wet with perspiration, hiding under the covers from the monsters. Where these monsters have come from I don’t know, but they are real to him. Mummy’s bed with the lamp on is the best place. Monsters wouldn’t dare go into Mummy’s room and they are definitely scared of the light. I hope he’s still there when I go to bed. I’m happy for my world to get smaller if I get to look after Dad, give Mr. Invisible a break and enjoy Bear.
My Dad and I are drinking tea and watching Newsnight. Dogford is contentedly curled on the rug and so is Eeyore, although I’m not sure why. I’ve got a to-do list the length of the room and a pile of ironing to the ceiling. But somehow, everything feels right with the world. Dad is here. Bear and I went to collect him from Auntie’s where he’s been for the past two weeks. Auntie won’t get a break exactly, but she will at least have some freedom from the relentless responsibility. That’s what Auntie and I can do. We can give one another a break.
We are mindful that we have a shared responsibility. We know we have to check with one another before we arrange to go away, even for a night. Going anywhere together for more than half a day is out of the question.
Dad has always been there for us. Over the years, he has cared for our children, taken Dogford out for countless walks, made a million cups of tea and coffee. The sink was always empty of washing up when he was about. One of the most thoughtful things he did was playing with the children whenever my friends visited, so that we mums could talk for a bit. Heaven knows there’s little opportunity with little ones. Heaven knows we needed it!
He would never accept thanks for anything. He just wanted to make our lives easier. Over the past few months, Dad has had to get used to a new way of living. He is no longer as mobile or active. He can’t really do much for us anymore. He’s had to understand that while we appreciated the help, the main thing was being together. That hasn’t changed. It’s just that we’ve changed places. He understands that he needs more help day-to-day but still he doesn’t take it for granted. It’s not about paying it back. It’s not about being fair. It’s just people who love one another doing what they can. And even if we were counting, don’t worry Dad, you’ve still got loads of credit in your account!