Dementia – The Moments

I have a lot of photos of my mother – despite her always hating having her photo taken – but most of them, don’t have a specific date attached to them.

Gone is the old habit of writing names and dates on the back of the photograph that helps  you identify long-dead relatives and long-forgotten occasions from decades before. That custom has died, along with the treasured photograph; no longer a much-beloved piece of paper, cared for and displayed proudly on polished sideboards and occasional tables. Instead everything is stored in an invisible cloud and shared on social media – all of us desperate for the acceptance and admiration that comes with the “likes” we achieve.

There are some photos of my mother when I know the exact dates and almost the exact times of day when they were taken. They are from family christenings, funerals and weddings. Three specific weddings, in fact: My brother’s, my sister’s and my own.

I loved everything about all three of these momentous events, from the build up, the dresses, the excitement and the planning to the days themselves, when I felt like I wanted to press pause and relish the moments forever. When I felt like I’d swallowed a bouncing ball and it spent the day ricocheting around my insides, swirling up the usually dormant butterflies and making them fan the flames of love and pure, unashamed joy.

It was mine and hubby’s anniversary a few weeks ago and for the first time in many years we both remembered it. You see, despite the absolute perfection of our wedding day, the memories do fade, the importance of that date diminishes and life gets in the way. Well, this year has been a pretty shitty year for us for a number of reasons, including of course my crazy mother, so perhaps it was that that made us both, independently, remember our tenth anniversary.

The restaurant was booked, the babysitter was free and we sat for half an hour before we went out and watched the video of our wedding with Archie, who was only ten months’ old at the time. He found it hilarious, watching his little scrumptious self goo-gooing and ga-ga-ing in his pushchair and hearing himself cry for Mummy every time someone wanted a cuddle with him.

I found it emotional, watching my mother, so beautiful and so proud as she arrived at the tiny chapel at the top of Edinburgh Castle with my sister. The two of them greeting guests and preparing my teeny tiny nephews and niece for their important role of walking into the chapel unaided.

I watched her and strained to hear her lilting Scottish accent above our chosen background music, as she chatted with our guests and agreed that yes, it was a beautiful day and yes, wasn’t the setting gorgeous.

 

I watched the gorgeous video, (created for us by a very talented and lovely friend) tears ruining my freshly made-up face (which I had to hastily apply again as the babysitter arrived. Damn you, emotion!) and realised that yes, it had been a truly magical day – all of it. But, I also realised that the build up, the planning with my mother was equally as memorable and equally as important.

She absolutely loved being involved in choosing my dress and I remember going to a very very very posh shop in Leeds with her and my sister, where I had to give them my budget over the phone before they would even book me an appointment! (Yes, it was very wanky, but we thought it would be a laugh!) Obviously I lied about the budget and tried on fabulously extravagant creations I could neither afford, not want to afford, but my mother and Emma were given champagne and they sat in a big comfy sofa and ooohed and ahhhed in all the right places.

When I was asked to “close your eyes, Sarah and imagine walking down the aisle. Chris – is his name, Chris? – is there waiting to see you. Now….. wait for it……have you got the image in your head? Have you…….is he there? Is he looking excited? Wait…..Now, open your eyes! Chris would want you to spend £XXXXX on this dress, wouldn’t he? He would think you were worth it.” All I saw in the reflection of the mirror – other than me in a stupidly enormous gown that I could not afford, was the image of my mother and sister stifling giggles and wiping their eyes and noses as champagne violently exited all the holes it could find in their respective faces. Loudly.

I found my dress eventually when visiting my bestie on a work trip down south. She booked me in somewhere small and lovely and it was the first dress I tried on. I wasn’t happy though, I needed my mum to see it and so I scoured the north of the country and found a stockist around 70 miles away who had one in stock for me to try on. It was a scruffy little shop and nothing like I imagined it would or should be, but I tried on the sample dress and my mother’s face told me everything I needed to know.

It was THE dress.

I have many moments like that, that make me smile:

When she came to help me get ready on my wedding day- helping with my dress and shoes, checking I was happy with everything – her face as she saw me in my dress for the first time, hair done, shoes on, flowers in my hair. Her face. Her pride.

The night before our wedding, when my close friends stayed at my parents house with me and my bestie spent hours and hours in the cold garage, preparing the flowers for the reception. My mother joined us, my “hens” as we fed the flower-fairy wine and pizza; laughing the way only old friends can. My mum there, with us. Loving every single second of being with her girls. That moment. That fun.

Watching my parents on the dance floor – long after the ceremony and speeches – spinning each other around as the Ceilidh band played. So happy. So proud.

The date itself doesn’t mean anything. It is why my husband and I have missed more anniversaries than we have remembered. It is the moments and the memory of those moments that matters. Your moments make you who you are. They are the building blocks of your personality and your character. Your moments can sometimes break you, just as they can also make you. Your moments are the story of your life.

How cruel then, that my mother has been robbed of her moments. That dementia has caused her to lose her past moments; ones that brought sorrow, pain, strength, joy and happiness as well as her moments yet to come; of family events, birthdays, Christmases, grandchildren’s graduations…… all gone.

The only comfort I suppose, is the fact we know her moments. We were there. I can hear how happy she was at my wedding, I can recall, like it was just this morning, the moment she saw my sister in her wedding dress for the first time, and her pride and pure happiness as we sat in that lovely wedding dress shop in Silsden. I can remember how it felt as a young girl, getting chased up the stairs, the threat of her hand across the back of my legs making me run like bloody Mo Farrah! I can remember the arguments and the laughter. I can remember the tears and the love. I can remember it all, the good and the bad, the happy and the incredibly sad.

My mother has no bloody idea what she has done in her life and where she is now. She cannot recognise her family, nor tell you how many children or grandchildren she has. She cannot put a cup to her lips and enjoy a warm cup of tea, nor recognise a biscuit and pick it up to eat it. She cannot look at a photograph and recall the moment, smiling at the memory of fun shared or success achieved. She cannot watch the birds from her new window, feeding from the nuts placed there by the nurses, encouraging them to entertain the residents. She cannot look to the beautiful hills and fields beyond her window and dream of freedom or of a future.

She cannot tell me she loves me. She cannot tell me she is proud. She cannot feel or hear our words of love and reassurance and she cannot recognise the pain we feel and that is the only comfort.

Dementia is far worse for those left behind – for those still in reality, for those struggling to cope with the changes, the catastrophic impact and the devastation that it has caused – than for the patient.

The only things we are left with, that offer comfort at all, are the moments.

The moments when we shared a joke, or an experience, or a life-changing event. The moments when we thought we were at our lowest, or our highest, or when things just went right. The moments when life changed direction and the future was exciting. The moments when it all just fell into place and we were calm.

My mother was there, through it all. Through the important bits, through the bits that created the person I am today. Through the bits that mattered, the bits that built me and formed my character. The bits that nearly broke me and the bits that made me.

I need to learn to cherish my moments and not let the emotion of them overwhelm me. I need to teach myself to enjoy the memory of these moments as they are the only thing I have left.

Cherish your moments. They slip through your fingers like grains of fine sand, yet they are more important in the creation of you than any education could ever be.

I miss you, Mum x