What Remains When Dementia Makes Everything Else Fade
I said goodbye to my mother in May this year, although of course I had been saying goodbye to her long before the day her body finally caught up with her mind. My long goodbye with mum began 12 years ago, with the prodromal signs of emerging Alzheimer’s disease. She was 50 when it started. I had been noticing for some time that she had become repetitive, that she had started to have anxiety, which is something I had never seen from my mum before.
In 2011, mum told me that she was worried about her memory, she said that she was finding it increasingly difficult to remember things that had happened only moments before. She asked me if I thought she might have Alzheimer’s. Her mother had it, and all her maternal aunts had it, and the family often joked that memory problems only seemed to run down the female line of our family. I knew nothing about dementia then, but I did a little research and found that though it is common, this is usually post the age of 65. At that time, my mum was only 54, so I told her she was worrying about nothing, that it was probably stress, and that it would be highly unusual if she had dementia at her age because it was so rare.
Fast forward three years and I sat in a neurologist’s office with her, holding her hand while the doctor delivered the news that she did indeed have early-onset Alzheimer’s disease. Mum cried and hugged me, but of course she had already known. Mum always knew best.
Eventually the shock wore off and mum, fiercely independent as she was, began to live around her diagnosis. Much like you do in pregnancy, you make adaptations to meet new physical frailties and demands. For years our lives became about Post-it notes and memory aids. And as more of her cognition began to slip away, we coped. We got her a bus pass after she had forgotten where she’d parked for the hundredth time, I batch-cooked on my days off and took Tupperware containers for her with days of the week on, so she didn’t have to cook. We got labeled pill dispensers so she’d remember to take her medication.
Even though we were living upside down and back to front, even though we had switched roles, as mum became the child and I the parent, we thought we were, to some degree, winning. But that is where dementia catches you off guard, for so long mum managed, finding creative ways to live with her memory issues that, ironically, it was almost as if we forgot she had it. Because as a family we adapted, mum’s dementia was the thing we lived around. And that’s the thing, people with dementia find so many ways to live around their deficits, that for so long, though life is altered from what it once was, it is still essentially the same. Until the day that it isn’t. Mum plateaued for so many years, retaining her autonomy, that when the decline came, it floored me. It was as if we were meandering along and then, without warning, we just fell off a cliff.
Eventually the day came that I had to make the decision to put mum in residential care, she had become increasingly impaired to the point it was no longer safe for her to live at home. She had forgotten how to use the shower, her oven had dust on it – she had forgotten how to use it, and most often would forget to eat. I put in a hot meals service to try and navigate this issue, but mum would either be out when they delivered her food, or she would place the foil containers on the side and forget all about them. She would wander constantly and then get lost, she took to withdrawing thousands of pounds from her bank account with her pin number written on the back of the card. I would finish work and have 15 missed calls from her neighbors telling me that she, again, had been brought home by a member of the public, completely disorientated.
The day I took her to the care home I had to lie to get her there, tell her we were just popping to see a friend, and then when the door closed I had to tell her she wouldn’t be leaving with me. It broke my heart, seeing her face, she looked so out of place, at least 20 years the junior of everyone else there, and from there we embarked on a new journey. One that involved 24-hour care, daily medication rounds, and mum becoming utterly lost in the fog of her own mind. And this is what shocked me about Alzheimer’s, because until that point I had just thought people with dementia were a bit forgetful, it didn’t sink in until that point the full horror show that watching a loved one with this cruel, insidious disease actually entailed.
In time mum forgot who I was, and would ask me when I went to see her if I had seen her daughter. Sometimes she’d call me mum, I came to learn that though she had no concept I was her daughter, she did know me to be familiar, and safe. As mum stood on the precipice of the steep descent of final-stage Alzheimer’s she became increasingly fearful and aggressive, she began to hallucinate, she would crawl on her hands and knees under tables in search of the demons only she could see. And she would wander, marching around day and night, in circuits around and around the care home, trying all the doors, babbling to herself. Most often I would spend my visits in tears that I tried not to let her see.
In the months leading up to her death the wandering stopped as she forgot how to walk, and with increased stasis came pressure sores. She could no longer feed herself, and would instead require feeding by staff. It was not just a case of forgetting what certain food were for, she could no longer work out how to eat, having no concept of what a knife or fork was even for. Her word-finding ability became non-existent, words failed her, she no longer knew how to talk, and communication became more and more difficult. Eventually, as her body finally failed her she became bed-bound, and I witnessed Alzheimer’s parting shot, she lost the ability to swallow. And when you can’t swallow, you can’t eat. I had no idea that Alzheimer’s would cause such physical devastation on my vibrant, youthful mum. Why would I? In some ways I am thankful that I didn’t know the destination until I arrived at that place.
My mum died on May 5, 2019. She had just turned 62. I was with her when she exhaled for the final time, telling her I loved her, and that she wasn’t alone. Telling her how proud I was of her, and how brave she had been. I don’t know if she heard me, but I feel like she did, because she was squeezing my hand right until the end. We went the distance together, her and I, from my beginning to her ending, and there was no other place I would have been at that moment, then making sure that my courageous mum left this Earth knowing that she was loved. Alzheimer’s is a rollercoaster, there are surprises at every turn. Things you have no concept that you would ever know, it is the steepest of learning curves, delivering changes and challenges at every turn.
But there is also something else, something that people embarking on this journey need to know. Some things are outside of our cognition — even when memory fails, selfhood remains. That same independent spirit that my mother had when she was well, also manifested in dementia. In the way she marched around the nursing home, in the way she would get cross when the nurses tried to give her personal care, and in the way she would nurse baby dolls with such care and attention. Always, always, mum was a free spirit. Always, she was a mother, and that didn’t stop with the onset of Alzheimer’s, because some things are instinctive. Some things are so deeply engrained into us that they are beyond the realms of mental capacity, or cognitive ability.
People like to pathologize dementia — they talk about how the person “dies” before they are actually dead. And in some ways that is true, the coherent version of the person you knew morphs into someone different. But this different person, the person they become, is still woven together with the essence of who they were. Their core is still there. Having seen my mother through every stage of the condition which eventually claimed her life, I know for certain that her selfhood remained. Even when words failed her. Even when mobility was lost. Even when the world made less and less sense to her. She was still Jacquelyn. Still mum. Brave, fiery, resilient mum. Before mum lost the ability to talk, I was visiting her one day and told her I loved her, she whispered back, “Me love you too. You’re my little girl.” And that is what is left when all else begins to fade. Love. Love is what remains.