Moving On

Dear Readers, this post isn’t really about nature, except that everything in nature changes, and grows older, and eventually passes away. On the way, the path can twist and turn, and it is not true to say that it is always relentlessly downwards. I have no illusions about the progressive nature of dementia, but it feels so important to emphasize that there can be moments of great joy and humour during that journey, moments that don’t get much attention in the usual narratives about the disease.

Last time I was in Dorset visiting my Dad in his nursing home, I heard that he had piloted a boat from Portland to Weymouth. He had been renamed ‘Captain Tom’, and the lounge was all abuzz with his exploits. This time, I got the actual photographic evidence, so here are a few photos of the intrepid mariner. I don’t remember the last time I saw my Dad so engaged, or so clearly enjoying himself.

And so it made me determined to make sure that when I visit, Dad and I have an adventure, even if it’s just a little one. In the past, I’ve been held back because I wasn’t sure how far Dad could walk, and I knew that I’d have trouble navigating the narrow pavements of Dorchester with Dad in a wheelchair, what with my dodgy back and all. But on Tuesday Dad, J The Carer and I headed to the local pub for lunch, and Dad marched along at a cracking pace with his walker. We were less than ten metres from the front door when we needed to stop for a breather, and I was very impressed. A year ago Dad could barely walk from his reclining chair to the kitchen without needing to stop, so the Home is obviously doing something right.

Once in, Dad had a light ale and we ordered scampi and chips. We waited. And waited.

‘They’re probably cooking it right now, Dad’, I said.

‘Catching it, more like’, said Dad.

Dementia is such a funny thing. The part of Dad’s brain that is quick-witted and likes to amuse is firing on all cylinders, but he introduced me to a new carer as his sister. What I am noticing, though, is that Dad is increasingly getting his words muddled: he tells me to open the door when it’s already open and then gets irritated because I didn’t realise that he actually wanted it closed. I know, from the brain scan that he had a few years ago, that the part of his brain that looks after language is damaged, and that this damage is likely to get worse. Because Dad has vascular dementia, any ‘event’ which results in oxygen deprivation (such as a chest infection) can result in a step-change for the worse. But at the moment I can mostly understand him, and his raised spirits are a delight to behold. He seems to have a new-found confidence.

When I visit the home in the evening, Dad seems tired but happy. He wants me to take the photos that I’ve shared home so that Mum can see them. I’m never quite clear if he’s talking about my mother, who died in December, or his Mum (who would be well over a hundred if she was still alive). But as usual I say that I’ll make sure that everyone sees them. To change the subject, I ask Dad what he’d like for his birthday.

‘I’d like to go home, really’ he says apologetically. ‘But I know that Mum has decided that I’m better off not seeing her and the kids, and that’s ok’.

And this is what really breaks my heart. He has decided that the reason he can’t see Mum is not because she’s died, but because he’s done something wrong. Before she died, Mum (who was in the home with Dad, and who was very ill) became very jealous of the ‘young’ (50-ish) women who helped Dad to shower, and I think it’s still in his head that he wasn’t a perfect husband.

‘Oh Dad’, I say, ‘You didn’t do anything wrong, and Mum really, really loves you. And if you could be together, I know that that’s what she’d want’.

‘That’s ok then,’ says Dad, unconvinced.

The following morning, I pop in to see Dad and he’s already busy painting some leaves to decorate the home.

‘I’ve been so busy!’ he says.

Dad is always busy, and generally he describes the home as being in ‘utter chaos’. This seems to give him great satisfaction, because he spent most of his life organising things, and he loves making a difference to the perceived anarchy of the second floor lounge.

We drink a frothy coffee, and Dad eats a custard tart, and is promised a game of dominoes later. He settles back contentedly.

‘I’m not going to try to go home today’, he says. ‘I think I’ll stay here for a bit longer’.

I give him a hug, and head towards the door. Then I go back and give him another hug, because the day will come when he won’t be here and I will be sorry if I didn’t embrace him when I could. But already he’s looking around for his domino partner. It is bittersweet to step back, to accept that the staff here know Dad as he is now better than I do, and to allow them to take care of him after so many years of looking after him and Mum. But now, I can enjoy the good times without worrying about everything else, and that is such a blessing. I am so thankful that all is well at the moment, and that is all that anyone can hope for.

 

 

 

18 thoughts on “Moving On

  1. Rhianwen Guthrie

    As ever this is such a touching post. You write about your father with such humour and humanity. Wonderful to experience and be grateful for the lighter, more joyous moments.

    I was on the blog writing course with you when you did it with the gentle author and am always so impressed by and interested in your blog and always love reading it… I failed to start a blog after the course but often think of that rather magical couple of days and remember how enjoyable it was to meet people and then follow up their successes, none more so than yours.

    Rhianwen

    Reply
    1. Bug Woman Post author

      Hi Rhianwen, that was such a great course! Blogging has so much to recommend it – the people you meet, the places you go, the discipline that it demands and the fun that it creates. Why don’t you have another go? xx

      Reply
  2. Hugh Mckee

    Your note is a wonderful tribute to a familial relationship.
    You are treading one of life’s most difficult paths with grace and caring kindness. The accomplishment is a major feat.

    Reply
  3. Robin Huffman

    Dear Bugwoman, the depth of your soul, and your eloquence, your poetry, your view of the world, continue to awe me. This tender story of your father is so beautiful. Go well, my friend!

    Reply
  4. P.D. Crumbaker

    I love everything about this. I remember being quite surprised when I arrived at my dad’s care home to an announcement that he and Miss M., a very properly dressed 91 -year-old dementia patient, were engaged and would, with my help, have a lovely wedding soon.

    Reply
  5. sllgatsby

    Such a moving account of your changing relationship with your dad. I’m sure I’m not alone in hoping that when my time comes, I have a carer as warm and dedicated as you have been with your folks.

    Reply
    1. Bug Woman Post author

      Oh sllgatsby, thank you. Mostly what I remember is being grumpy, but I did my best and I think that’s the most that any of us can do. And they were a great Mum and Dad, and that helps. It must be much more problematic if the relationship was fraught…

      Reply

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