Celebrating Mother’s Day when your mum no longer knows you

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I can’t say exactly when my mum forgot who I was. But one day out of the blue about two years ago, she asked me if my mother was still alive. We were sitting having tea and the question hung in the air for a few moments while I tried to process it and think of how to respond. I can’t explain what it felt like, that moment when I realised that my whole life had fallen into a gaping sinkhole inside my mother’s mind, never again to be retrieved. I wanted to scream at her, ‘Mammy, you’re my mother!’ I wanted to crawl into her lap and hope her body might remember even if her mind couldn’t. Instead I just said, ‘Yes, she is.’ She took my hand in hers and stroking it said, ‘She must be very proud of you.’ Fighting the torrent of tears that would come as I drove home later, I replied, ‘I hope so. I hope I’ve made her proud.’

Alzheimer’s disease is a ruthless and cunning thief. It steals a person’s memory and their sense of self slowly, stealthily, right from under their nose. Nothing is sacred. My mother battled it heroically, desperately trying to cling on, determined not to hand it all over without a fight. After she moved into a nursing home, my brother, sister, and I discovered in the drawers at home countless notebooks in which she’d written, over and over, information she’d obviously been fearful of losing: her own name and address, dad’s name, our names and birthdays, other significant details. Over time, the writing became less legible and the details more sketchy, letters missing or misformed, part of a name omitted, numbers and dates confused, until even her own name became a mere fragment. It was the most awful, most tangible, record of a mind in decline. In those small scribbles, her panic was palpable.

She never spoke about it, stoutly refusing to acknowledge there was anything wrong. For a while, she tried to blame her lapses on dad. ‘I think there’s something wrong with him,’ she’d tell me conspiratorially. ‘He keeps losing things. As soon as I put something down, it disappears.’ I think we were all in denial to some extent. There were early signs, most notably a preoccupation with her childhood. She would go over the same events repeatedly, telling and retelling the story, frantically searching in the rubble of her past for something to hold onto as her grip on the present loosened.

One day when I arrived to the house, I could hear her from the hall chatting away to someone. When I got to the sitting room door, I realised she was alone. She was watching the weather report on RTE and I observed her for a few moments engaged in a full scale conversation with Evelyn Cusack. When she eventually saw me, she didn’t flinch. Instead, she introduced me to Evelyn, telling her I was a teacher, smiling broadly at the imagined response. In a strange way, it made absolute sense to me. The warm, familiar face on the screen had become as real to her as mine, its owner a trusted friend.

I knew instinctively what I had to do. I sat there, making small talk with the weather lady, commenting on her outfit, asking if she’d any holidays planned, until she signed off. Mum was thrilled, but in that moment I knew that having an imaginary conversation with a woman on the television was the least of the challenges I would face in the months and years ahead.

The thing about Alzheimer’s is that it’s not only the sufferer who forgets. Those who love them forget too. Faced with a stranger who knows neither themselves nor you, it’s easy to forget who they once were. The changes in personality and demeanour over time are catastrophic. Growing up, cursing was forbidden in our house. Even ‘Shut up,’ would be met with the full force of mammy’s ire. This made it all the more strange and funny – because the truth is that there are many funny moments too – when mum developed what can only be described as a foul mouth. I never got used to hearing her telling me to ‘fuck off’ or launching an expletive-filled tirade at the caring staff.

On one occasion, I had taken her out for a drive and we were stopped at traffic lights. She looked up at a sign over a sex shop and started to read: ‘Super Con…. Super Con-do…. Super Condom.’ Then she asked me, ‘What’s a condom?’ I sat there, willing the lights to turn green, as I tried to explain to my mother, with whom I’d never had any kind of conversation about sex, what a condom was. I muttered something about a rubber and she said something about putting a rubber on a pencil, at which surreal point the lights changed and I managed to distract her.

Part of me found this more liberated version of my mother intriguing; perhaps it was less a distortion of her personality and more her true nature expressing itself uninhibited. I wondered what kind of relationship I might have had with a mother who felt free enough to tell those who deserved it to ‘fuck off’, and how different I might have been as a result. But philosophical musings aside, I simply missed my mum. When my own daughter was born, I found myself constantly wanting to ring her for advice or to tell her something my baby had done, but by that time she didn’t trust or understand phones and she was fast forgetting she’d ever been a mother herself.

My dad died last November. Mum’s illness had taken a devastating toll on him. I miss him terribly, but I discovered that grief was not a shock to me. When a loved one suffers from Alzheimer’s, they are not dead, but you are grieving. Every day. For years. Mum is very happy in the nursing home where she lives. The aggression that marked the early days of the disease has given way to a quiet acquiescence. She has the care of exceptional people who value her as she is, untainted by memories of how she used to be.

Her smile remains unchanged. In some ways, I think she may be happier now than she ever was. Every now and then, she lights up suddenly, and out of the stream of incoherence comes a gentle ‘That’s lovely,’ or a shocked ‘Jesus, Mary and Joseph!’ And in those fleeting moments, I can see my mum clearly, and I know there’s still some part of her hanging on, a final defiant two fingers to the Alzheimer’s.

I gave her some markers and a notepad on her 87th birthday recently. Its pages are already filled, rows and rows of lines and dots. When I visit, she reads it to me. I can’t make sense of what she’s saying but I’m beginning to think that she can. My brother describes it as a kind of code and I wonder if he’s right. Perhaps it’s we who are in the dark.

These days, I don’t know who she thinks I am, or what my visits mean to her, but I hope more than anything else, she senses that she’s loved. The words mean nothing to her now, so mostly I just hold her hand and have imaginary conversations with her, hoping that in the midst of it all, some elemental part of her remembers I’m her daughter and knows how very proud of her I am.

17 thoughts on “Celebrating Mother’s Day when your mum no longer knows you

  1. Dear Ruth, my name is Natalie Coates.. I’m in Texas & just read your story about your sweet Mom.. as I set here crying after reading our story because it sounds so very familiar.. my sweet Mom also suffers from this vicious disease Alzheimers.. my mom was diagnosed 10 yrs. ago & now in the last stages herself..my moms name is Jewel English..
    I have her in a private home with 3 other ladies that I also work at.. the time we spend together is priceless & no place I would rather be.. God Bless you & your Mom .. I look forward to hearing from you in your blog..

    Liked by 1 person

    • Dear Natalie, thank you so much for such a heartfelt response to my piece. I’m so sorry to hear about your mum – it sounds as if our mums may be at a very similar stage in the disease. What a beautiful name your mum has! I empathise completely with how precious these days are – I feel every day that I’m on borrowed time and value every minute with mum. Thank you for taking the time to respond and I look forward to hearing from you again x

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  2. Thank you for sharing. I’m am going through the same thing with my mother. It is so heartbreaking to watch this person whom you love so much go through this metamorphosis of this horrible disease. I too hope my mom knows that I love her dearly..

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  3. Thank you for writing this. For so long I have wanted to put into words what it’s like to love someone who suffers from Alzheimer’s or Dementia, but I could never find the right words. This painfully describes some of the moments that occur when you are caring for someone who suffers from this illness. I watched my Gran and Grandad go through this same thing for ten years, and I have felt those exact same emotions as the ones you so very well described.
    I have no doubt that your Mother is so very proud of you Ms Petherick, you’re a wonderful woman who inspires many. And trust me, they know they are loved, deep down they always know.
    Sending you and your Mam lots of love today.
    Kim x

    Liked by 1 person

    • Kim, so lovely to hear from you, and thank you so much for taking the time to respond to my piece. I’m so sorry to hear about your Gran and Grandad – that’s so hard on your and your family. I can’t tell you how much I appreciate your comments Kim – I remember you well and the pleasure you were to teach. I hope all is well with you and your family. Happy Mother’s Day to you and your mum. Keep in touch x

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  4. Such a powerful and emotional piece of writing . Even though I have not personally experienced this pain with any of my close family or relative but this piece has made me feel like I know the feeling of such sadness . I’m really sorry for you .And I think yourself and whoever that is fighting with such a huge challenge is very strong . The challenge of dealing with your grief and trying to hold on to all those beautiful memories you had with your dears . Keep strong as always ❤️

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  5. There is nothing more dear than a mom. My heart goes out to all of us caring for our loved ones with Alzheimer’s or Dementia. God gives us strength and patience.

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  6. Hi Ruth
    Powerful, deeply personal and yet touches a chord that chimes across us all. A beautiful piece of writing from a strong resilient empath who knows how to write conversationally and from the heart. Thank you Jes xx

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