Dementia Awareness Week - "I'm your granddaughter..."

Ahead of Dementia Awareness Week 2018, which commences on May 21st, a personal tale of dementia from the experience of a much loved granddaughter.

Trigger Warning: The piece describes physical and mental deterioration through dementia and familial loss. Please consider your personal well being and safety before continuing further.

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The thing I remember most about my grandparents’ relationship was their story - the story of the night they met. It was a ‘love at first sight’ story from my Grandad’s position and it was ever more embedded in me that real love was like that because it had similarities with the way my father perceived his first view of mum.

Real love was about seeing someone across a crowded room and knowing you wanted to spend the rest of your life with them. It was turning to the friend beside you and saying “I’m going to marry that woman”.

I loved the story because it was romantic, even though I wasn’t, and because this one moment so long ago could mean so much to her, even after everything else she had been through in life. The way she told the story almost exactly the same, time after time, and the way you could never be bored with it, added something to is magic. It was the way she ended it with the same hand gestures and the phrase “and I felt about this big”. It left you in no illusion as to how big “this big” was and generated an irrepressible smile and the urge to mouth the words with her.

You see my Grandad did see my Grandma across a crowded room. He was on the ground floor of a dancehall with a friend. She was on a balcony, with a friend of her own. They did not know each other, but he knew he wanted to marry her and he told his friend as such.

They met, they danced and he walked her home. She told him “not to get any ideas about courting” and he retorted “Who asked you?”, or was it “No one asked you.”, and she “felt this big”.

I can’t tell you when my Grandmother started suffering from dementia. It was suffering. She knew it was happening before my Grandfather did and he knew before we did. She worried and covered up, and then worried some more. She wanted out. She would tell him as such, and break his heart every time. She did not want to be the person she became. She did not like the loss of control. In that I empathise. I am my grandmothers’ granddaughter after all.

It is these memories of my grandmother that I subconsciously banished in her last years. It is these memories of my grandmother that were too hard to dwell on. If you remembered who the person was, at a time when you were forced to deal with who they were at that moment, you’d lose them over and over again. Grief becomes omnipresent, and omnipresent grief is soul destroying.

When I look back I remember that feeling that she was always asking me the same questions. I took it as pestering. The same conversation every week. She liked my ex boyfriend, why wasn’t I still with him? I wasn’t getting any younger. The same things most grandmothers dwell on. Yet I look back now and wonder whether the repetition of conversation was really a symptom of her damaged mind. Was she simply returning to a conversation strong in her head, something she had been thinking of, that was pressing on her mind. A conversation she’d forgotten we’d had already.

I remember the stages when she couldn’t be trusted to get the sugar right in the tea. Forgetful. Then it went to the time she couldn’t be trusted to make the tea. The time she couldn’t be trusted alone in the kitchen and eventually the time she couldn’t be trusted alone in the bathroom.

I grew up as my grandmother grew more incapable. The week I spent in hospital, sleeping on a chair by the side of her bed, missing my friends wedding. The weekends I slept in her spare bedroom because Grandad was in hospital, so tired from taking care of her. The afternoon I had to leave the girls to a fun 'all-dayer" whilst I tried to retrieve a soiled incontinence pad from an overflowing toilet of faeces. The Saturdays I spent in conversation with a room full of dementia patients. The evening she tried to break my wrist by slamming a hospital door on it. The afternoon she came at me wielding my Grandfathers walking stick. The Chinese burns, the biting. The way she worked out she could hurt me if she squeezed my hand against my ring and the way I learned never to wear jewellery in her presence again.

I also grew that little bit more cold. I knew that there was this thing right at the heart of me that truly loved her, but that bit was no use on a day to day basis. Knowing I loved her deeply was enough. It was there, and I could go back to it when I needed it, but during those things, during all those things, it was duty that helped me carry on. It was this sense of duty that said, I owe it to the love I feel for you, to the love you’ve given me, and all those things you’ve done for me in the name of that love. I didn’t do it for love. I did it for the duty that is born of that love. I did it for the respect I owed her for everything she was before. I didn’t need to love her for who she was then, because I still loved her enough for everything she was before.

Her room was not one I’d choose to die in, but then I suppose you very rarely get to choose where you spend your final moments and it was quieter than a bustling hospital ward.

Granddad kept his promise, as he would say. She did not want to go back in to hospital. Though she did not really want to go in to a home either, he can hold to himself that he kept his promise.

The wallpaper had a base pattern of roses and was painted a sweet pink. You could imagine that they’d painted and over-painted on many occasions. The furniture was old and used. Its age was shown in the wear. Everything said “Care Home”. From the cheap carpet they picked because there will always be stains, to the duvet cover that had faded to the lightest pale because it had been washed so many times. It wasn’t overtly offensive. It was warm and lived in and they were good people. It was your standard bed and breakfast, but I couldn’t help but wish for crisp bed linen and the pleasure of a five star hotel.

There is nothing pleasurable in this type of loss. It is lowering your expectations and accepting the way things are. She was as comfortable as they could make her without breaking the law and she couldn’t see for it to offend her eyes. It did its job. It performed its function. It gives you somewhere private to go to have your thoughts. You sit watching, waiting, and yet not really knowing what for. Your mind whispers, “What use am I here? She doesn’t even know I’m here.”

Yet on the off chance that she might, you continue to sit. I had stopped talking my nonsense because she’d fallen asleep. I felt like I should just tell her I loved her, that if she remembered only one thing it should be that we love her, and call that the end. Call it that point. We’d gone passed the ‘I love you’ moment I’d had with my Great Aunt. We’d missed that beat, because she couldn’t say the “I love you too”, in that way that you know that its done, its said, its agreed and you both know that’s all that matters. No, we’d passed that point. Now we were at the point of watching for stalled breaths.

We were, but as the time ticked to the end of my visit, I whispered I loved her in her ear and I told her I had to go. There had seemed no recognition of my presence the whole time I was there, but the moment I said I was leaving, she moaned, cried, complained. No words, just emotive vocalisations. I wasn’t sure if it was just bad timing, and that I was being over emotional and reading something into the situation that wasn’t there, but just in case I sat back down and told her I thought she’d wanted the peace and quiet. I could stay another fifteen minutes if she wanted.

The crying stopped, the heavy, forced, breathing returned and I felt my heart crack just that little bit further. So I did, I waited another fifteen minutes until she was sleeping, and then I left. I never saw her alive again.

The multiple missed calls, and eventually the actual call, told me she was gone. Two hours before I was due to be there with her. I was irrationally angry. Why could she not wait? Why could she not wait just those few hours?

I made the journey to say my goodbye. I said all the things I needed to say, whispered in an ear that could no longer hear, to a body that was no longer warm. I stroked her hand, occasionally, and I neatened the bed sheets below me. I watched my mother, my father, and my grandfather all deal with the same thing so very differently and I wondered so many things.

This stage was over, this period of time and this suffering, and, because it seemed the kindest thing for her in the circumstances, it was hard to truly grieve in the moment. I would never have wanted to lose her, but sometimes you have to let go because it’s only fair and only right. So it sits there waiting.

No grief is ever the same, but, for me, grieving a loss after dementia was a quiet greyness, a slow coming to terms of something that had been happening over many years. It was a heart breaking and uncomfortable journey and it left its mark. I felt altered in a way I wasn’t sure I fully understood.

My grandfather never talked about his part in her journey. Their journey. He would sit for hours, in silence, just holding her hand. He struggled with the thought that she was alone, without a loved one to just be there - even if it wasn’t ‘company’. He would be dressed and ready for me to drive him to see her, hours before I was due. Sat in the chair by the window, always looking 'presentable', simply waiting.

He was rarely a man of many words, but his thing was always writing just a few lines in my birthday card. Silly brief rhymes, to convey his love, without having to actually say anything - to say everything in the briefest way possible.

Still, nothing could have prepared me for reading the card he’d asked the florist to write on her funeral flowers.

“Edith, An aching void, Alf.”

Growing up, my grandfather seemed to embody all that was calm and quiet. He was the rock my Grandma rested against and her solid footing from which she rallied. His tale is for another day, but suffice to say we were built differently. In my case it's more, "Why use 5 words, when you can use 5,000?" And so these were my words - by ad hoc memory and by tear stained cheek.

The pair of you, An aching void, Me.

-/-/-/-

If you have been affected by any of the issues raised in this piece, please consider whether you would benefit from accessing relevant support.

https://helplines.org/helplines

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