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By: Colleen Ellison-Wareing –

I want so much for others reading this to understand that your parent having Alzheimer’s prior to dying, does not in fact, make their death easier. It is my hope that after reading this, no person shall ever say to the child of a parent who was swallowed up by the disease “Didn’t you already grieve them?”

What I learned in the 8 years that my mother endured Alzheimer’s is, that their illness does not affect each person, or their families the same way. Adult children process the sickness differently and siblings and grandchildren have their own interpretations.

Four years into my mom’s journey, I called our local Alzheimer’s chapter and reached out. I was put on a waiting list, and within a few months I was assigned to a Social Worker. I believe that is was the best and most helpful decision I have made. I had a support person to lean on during the last four years of my mother’s captivity. That is how I would describe her experience. She was a hostage. Sometimes when I visited her, I might catch a glimpse, a glimmer, a giggle-like she was trying to escape; break free. Often, I was just another random figure behind her vacant stare.

Almost 2 years exactly, prior to her death, my sister and I got a call from her retirement home, letting us know she had had a seizure and would be moved to Palliative Care. During the waiting period to get her a placement, my sister organized round the clock nursing care for her. With the 24 care, hydration, nutrition and monitoring, she ‘rallied’ back and was admitted to a Long-Term Care Facility, instead of a hospice.

Little were we to know that she had begun a cycle of: seizure, sleep, soldier on. This happened every 4 months or so – each phone call was: scary and sad and left us sure that ‘this was it.’ Each time, mom pulled through and had long days of sleep afterwards.

The call to let us know she had pneumonia was quite unexpected. The blizzard occurring in my hometown made my leaving immediately impossible. I got the last train ticket available, the next day, and through white-outs, my husband got me to the train station.

I arrived in her room at 7 pm, on February 13th – my late father’s birthday. I was quite unprepared to see her laying still, with her lower jaw dropped. I call that, ‘the death drop’, I am not sure of the medical name, but, if you have seen a loved one with that, you know exactly what it looks like.

I was shocked and left, to walk through the snow, to the Bed and Breakfast I had booked.

Exhaustion had me asleep by 9:30 pm, so I was rested and beside her bedside by 7:00 am the next morning. The staff were excellent and gently suggested I keep a cool cloth on her forehead. Her temperature was winning the battle against the Tylenol. Her breathing was raspy, but the coolness of the cloth brought her comfort. In the stillness of her room, as I tenderly reminisced with her, she reached over and squeezed my hand. It was so unexpected and tender and intimate, it took my breath away. I felt her, all of her, my mom, touching me, telling me she was back. When the moment passed, I quickly grabbed my journal and jotted down that moment. I did not want the grief to steal it from me, too.

At noon, we had ‘the Palliative Care meeting’ and my sister and I trudged on-ward, to what we all anticipated to be a few days of peaceful and gradual loss of mom.

At 6:50 am, on February 15th, I arrived in her dimly lit room, to see her body making fretful movements, a wet rattling rasp calling out beyond her frantic breathing and her face contorted in pain. Over the next few hours, staff monitored her every 30 minutes, to try and get the medication to take her into a peaceful state. Several times, she stopped breathing and seemed at peace-only to rally again, back, to a frantic state. And then, as my sister and I reminisced about her exciting life and wonderful grandchildren, my sister looked at me and said, “The day mom got her Alzheimer’s diagnosis was the worst day of her life.” Abruptly, Mom’s head lifted up, and a loud, ear shattering gasp let out. We looked at each other and I said, “Mom, your shortbread cookies were amazing.” And, she lay back and left us.

And there is was…OVER…

DONE…

GONE….

NEVER COMING BACK.

And we sat for a few seconds looking from each other, to her and back.

And she had died.

Eight long years of losing bits of her: her words; her gaze; her grasp; had not prepared me for the physical loss of her. I long to feel the touch of her hand – even as one of the crowd of unknown faces – her touch was my home, my heart.

The physicalness of my grief is unexpected. I simultaneously feel her presence, and as though part of me has been amputated. Not a phantom arm, but a phantom-mom.

Some of those that knew my mom had Alzheimer’s have been quick to dismiss the loss of her, “You grieved her a long time ago, didn’t you?”  I am silenced by these comments. Knowing that a precarious dam is holding back a floodgate of grief and anger and sadness for all my beautiful mom endured at the hands of Alzheimer’s – the most sadistic of captures. That death was her release is of no comfort to me. She lingered, out of my touch and then slipped ever so slowly from my sight – like watching your mom caught in an undertow and then finally drown, just beyond your grasp-for eight years.

In the final lonely hours that I spent with my mom, I reflected on the millions of other adult children who suffered the same shots of grief – dealt out in slow motion, over years. I pictured a tennis ball machine, lobbying hard gut shots, perfectly timed to hit, as soon as you thought you had recovered. I felt so alone and so connected to their experience, simultaneously.

If anything good can from all she went through, it would be this. When you learn that your friend, colleague, peer, neighbour, has lost a loved one that had Alzheimer’s, please say, “I am sorry for your losses.” They will know that you understand. You get that they have been grieving for an extended period of time and now they have lost everything. And maybe, that may give them a tiny bit of comfort.


Sharing your story can be a therapeutic part of the dementia journey. If you’d like to have your story featured in our Tributes and Reflections series, email info@alzheimerlondon.ca.

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