I started this blog as a means of sharing my mother’s story. A woman cut down in her prime by an aggressive and rapid version of dementia. I never once dreamed whilst pouring my broken heart out on to the screen, expunging my pain through the over-sharing of my experience and shock, that I would need to use it to grieve my father.
But, life never seems to go to plan, does it? It seems to watch and wait until you are most settled before slide-tackling you to the floor.
The pain over losing my father is very different from the ongoing grief of losing my mother. I recognise it. It is not a complete stranger to me, more like a distant cousin to the grief that already existed inside me. Its characteristics are similar – it catches you off guard, makes you feel vulnerable and whole at the same time – but the shock factor gives it an edge.
But then perhaps I had the shock factor with my mother, perhaps if I dared to look back at my blog posts and remember all those occasions when she’d be delusional, paranoid, angry, violent, maybe I’d recall a sense of shock at what was happening to her.
I do know that whatever shock I did feel was dampened, softened and eased by my father. I don’t have that luxury this time. I’ve run out of air bags and instead must brace for impact and hope for the best.
With no one nearby, we are considering moving mum to a care home in Yorkshire. It won’t be easy, and we certainly won’t be able to do anything whilst COVID is still a threat, but it feels wrong having her so far away from us all. There is a guilt to knowing she is on her own.
My father would pop in and see her several times a week. Not staying long, as there is no response from her and there are only so many times you can try and get her to open her eyes by stroking her hair, or patting her hand gently.
“I don’t go everyday anymore,” he told me earlier this year. “It makes me too sad.”
And I didn’t blame him at all. I have read blog posts and social media posts about people visiting their loved ones in care homes and the message being that even though they don’t know you’re there – it’s the right thing to do.
There was one I read a few years back which brought tears to my eyes – an old man told his doctor that he couldn’t be late as he needed to get to see his wife in the care home.
“But, she won’t know you’re late or even there at all,” the doctor says.
“No, but I will.” the old man responds.
The selflessness and love that man displayed in a (possibly) fictional story made me believe that going to visit your loved one was the right thing to do. That sacrificing your own sanity and mental health was the true act of love. The highest form of love, in fact.
But, what if that’s wrong?
What if putting yourself first and committing to live fully, to not waste a single day you have been blessed with, to remember but not lose yourself in the memory and the grief – what if that was true love?
My dad plumped for somewhere in the middle. He was struggling to see Mum in the home. It distressed him immensely, seeing the woman he had loved from the age of 17, curled up, dried up, a hollow shell. For his own health, he chose to stay away some days. He chose walks with his dogs and golf with his friends. He chose to try and live his life as best he could.
His good golfing friend called me last week. I was in the car going to collect Miss Mabel from her mini theatre class.
“We’ve had a wee trophy made,” he said. “The three of us are going to play for the trophy each year – the Stephen Turner Trophy – for as long as we are able.” He told me. “As a mark of respect and also to remember him and all the good times we had on the golf course together.”
Needless to say, the tears flowed heavily so that in the end, I had to pull over.
It was a reminder that my dad lived. Or had started to live again.
Mabel got into the car and could see I’d been crying. I explained I was just upset about Papa, that it was normal and I was okay.
My kids are used to me talking about him, we laugh about silly things he’d do and funny memories of him. I want to talk about him. I want him to live on in their memories and in mine. To feel him around me and recall every tiny detail of every moment I spent, safe in his company.
“He’s probably having his dinner right now – without his elbows on the table!” Mabel laughed, remembering all the times in recent months when she’d watched, delighted as her big brother got told off by Papa for his lazy elbows at the table. She then looked up at the small lights in the roof of my car – the ones that turn on when you open your door.
“If you’re there, Papa, turn on the lights!” she stared and waited a few seconds.
“Come on, Papa!” she spoke a bit louder. “If you’re there, turn on the lights!”
Nothing. I smiled and was about to commiserate in some way. But she just shrugged. “He must be busy. He’s probably dancing with Granny.”
I caught a sob in the back of my throat and managed to supress it. I quietly congratulated myself on my improving self-control.
“Yes, probably, darling. It’s nice to think he’s up there dancing.”
“With Granny,” she insisted. “Because she’s not really alive anymore, is she?”
“No, I suppose not.”
“Or they could be playing golf?”
“Yes, they could.”
“I’ll ask him again tonight,” she smiled up at me. Her bright blue eyes twinkling with possibility. “About the lights,” she said.
….And as we set off home, I was imagining my father in heaven, where heaven is a Scottish version of Kellerman’s; golf and dancing available for all the guests, along with plenty of other activities to keep everyone entertained.
And I marvelled at the beauty that lives inside my daughter’s head.
And then I laughed.
And I heard my dad laughing too!
Thank you for your amazing insight into “true love”, it’s helped me so much this week as I move towards making life changing decisions. I’ve always followed your blog and will continue to do so. My Mum died one year ago today and with my husband’s diagnosis of Alzheimer’s coming at the same time, I realise that I must get on with living life. It’s hard letting go but I know I must. Thank you for your wisdom and that of your lovely daughter Mabel. Much love always, Alison
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Oh Alison, I’m so glad my words offer you some comfort in what must be an incredibly difficult time. I hope you find the strength to live fully and bravely again. I hope life is kind to you now.
When I saw that beautiful photo of your parents I heard your Mum’s laugh, clear and slightly naughty, even though I have not seen her for five years or so. You express very difficult thoughts and emotions beautifully Sarah, and my heart goes out to in your grief for your lovely Dad Stephen. From my conversations with your Mum at the golf course, you three and the grandchildren were never far from her thoughts. We have been lucky, in that my Mum and now my Dad still recognise us, even though dementia took Mum and is now taking Dad. Some form of middle way would honour your Mum’s love of all your family’s achievements and your need to care for her.
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Thank you for your kind words, Lynne. Sending lots of love back to you xx