Twelve years ago, I started losing my Mom and didn’t even know it.
She was being hijacked from the inside and we all stood by helplessly, unable to understand the core issue — and it would take years to understand. How does one reconcile seeing your loved one in front of you, but who they are, their being is gone?
That’s the funny thing about ambiguous loss — that’s what I’ve since learned it’s called — it’s loss without a death or an ending. You are just left hanging, solely responsible for resolving the hurt, pain, and loss on your own.
This type of loss goes beyond dementia as well: loss of a relationship, mental illness, kidnapping, disappearance, war, and anything else left open-ended sans closure. It’s grief of something that is no longer what it once was and there is no clear ending or conclusion.
With dementia, with my Mom, she is physically in front of me and “alive,” but her soul and her essence have faded and she’s no longer what she once was. She is still on this earthly plane yet that’s not my mom, I don’t know this person any longer.
It’s a real mind fuck.
But dementia’s like that you see. Good days bring hope and reminders of your lucid loved one, tricking you that they are still there. Treasure those moments.
Dementia sneaks up on you, slowly infiltrating until it enters every aspect of your mind and body. That goes for the person living with it and their friends and family. It’s group and individual grief.
You can run but you can’t hide. And run we tried…
When my Mom, Ellen, was sixteen, she was involved in a devasting car accident, one that nearly took her life. A priest delivered her last rights, everyone thinking her injuries were too severe, requiring numerous surgeries. Somehow she survived, although it would never be easy. Among the many broken bones, disfigurations, and other physical wounds resulting from the accident, she suffered a traumatic brain injury. This is where the story truly began.
The brain trauma paired with undiagnosed PTSD would manifest in all sorts of ways for the next fifty years, ultimately reaching its end destination, dementia. That seems like a direct line from point A to point B but it wasn’t that simple.
Years of anxiety, panic attacks, vertigo, depression, dizziness, medications, misdiagnoses, and an endless list of perceived physical ailments blurred the true diagnosis from emerging until well after the dementia symptoms were already activated, displayed front and center. We were already losing her yet were distracted by red herrings, chasing down each condition as if there would be a cure.
In hindsight, there is a direct causal relationship between my Mom’s traumatic brain injury and her dementia diagnosis but living it in real-time was messy and confusing and heartbreaking…and still is.
Through the telling of major events and milestones, this is the story of ambiguously losing Ellen.
The Beginning
In 2012, at the age of sixty-two, Ellen was pushed into retirement by her new boss, complaining she couldn’t keep up with the latest technology. At the time, we just assumed technology wasn’t her jam, even trying to teach her how to text to no avail. Seemed like she just wasn’t a tech girlie and that’s ok.
The retirement saw a drastic change in my Mom — more irritable, forgetful, obsessive about her pre-kids past, angry over situations that had been resolved for decades.
In retrospect, work prolonged her brain power, providing consistent activity and once that ended, there was a significant drop in cognitive abilities.
By the end of 2012, her driving skills, although never great, were abhorrent, putting herself and others in danger. She totaled a vehicle that year and then totaled her next car in 2013 too, ending her driving privileges for good. Luckily, no one was harmed by either accident but it signaled a massive shift in day-to-day life. She was no longer allowed to drive, reducing her independence ten-fold.
2013 also introduced major language gaps: not knowing how to write certain numbers anymore, spacing in the middle of sentences, and using filler sounds such as “da da da” or “blah blah” in place of words and phrases she’d forgotten. We all believed what we wanted to believe and the signs were deflected by denial. Denial was big in 2013 and 2014.
The next year advanced with struggling to use the TV remote, being unable to dial out on the phone, difficulty with silverware, and misplacing everything — keys, wallet, purse.
By 2015, aggression reared its ugly head, Ellen became hyper-focused on her pills and her medication. In the absence of full cognition and in the depths of confusion, Ellen spent hours each day counting and re-counting her medications, of which there were many: vitamins, pills for anxiety, mood stabilizers, memory boosters, thyroid, the entire gamut. The pills became an obsession, constantly worried, convinced missing them was the cause of her condition.
At that point, there was no more hiding or denying that something was seriously wrong and all previous diagnoses were inaccurate and/or distractions. Time to open your eyes, everyone — myself included.
The Diagnosis
Finally, in 2016, the official dementia diagnosis was determined but we could only whisper about it in secret. Mom refused to accept this outcome and would become enraged if the topic was broached with her.
As a true Irish Catholic family, this refusal would suffice and we would sweep it all under the rug. That’s not for us. But remember, when it comes to dementia, you can run but you can’t hide, it will always come for you.
While we all coped in our individual ways, Ellen rapidly declined, needing outside assistance during the day.
2017 and 2018 saw aids coming to the house every weekday while Dad was at work, keeping Mom company and ensuring she was safe and cared for. This help was unwanted though by Ellen, who became agitated and even violent with a few of them, but she could no longer be left alone.
The oven would be left on; doors left wide open; cigarettes burning and unattended; she would be aimlessly wandering the neighborhood; unable to properly bath — the need for support was no longer optional, it was required.
The additional coverage of support was not received warmly, unfortunately, increasing the physical aggression with the aids and anyone else attempting to help, no one left unscathed.
Next Level
Urinary tract infections (UTIs) are no joke and are very serious issues as you age and that was the case for my Mom. 2019 showcased a rapid increase in erratic behavior resulting in multiple hospital stays with most returning with a UTI diagnosis. UTIs in aging folks can mess with the mind, causing confusion and fog, and are a dangerous component of elder dementia care.
In addition to the UTI roller coaster, memory deficits escalated, even with her direct family members. I vividly remember getting my Mom out of the house and taking her for breakfast, and at some point in the trip, the switch would flip. Suddenly, fear would enter her eyes, unsure if she could trust me. I was now a stranger and not her son. I would be treated as if I were kidnapping her or attempting to harm her. That’s where I learned to compartmentalize.
Then enters the sundowning phase in 2019 and 2020 — sneaking out of the house in the middle of the night; non-stop pacing; manically rummaging through closets and cupboards; trashing the house while everyone else slept.
Lost
When the pandemic hit, Mom started fading fast. With limited human interactions and access to the outside world, language and mobility severely subsided.
By 2021, a wheelchair was needed to help move her around. Unable to communicate and in a constant state of confusion, she would weep for long periods, unable to be consoled.
As the tears dried, her mobility, language, and health were at an all-time low. By 2022, Mom was sleeping almost 19 hours a day and later that year, she qualified for hospice care, signaling the initiation of the final chapter of this dementia story. She has not left her home since and remains in hospice to the present day.
There’s no playbook for losing your loved one when your eyes are capturing them right in front of you. You see them yet they are not here, not the person you loved anyway.
That person is gone which is the hardest part to accept and is why it’s ambiguous. It’s vague, unending, without a sense of closure so it’s your burden. It’s my burden.
Through therapy, I’ve been able to work toward personal closure, acknowledging the woman I’ve known as “Mom” is no longer with us. Her vessel is still here but my Mom is gone.
I grieve the life she did not get to live, constantly being anchored to the original trauma, not allowed to fully relinquish the past.
I grieve the person she wanted to be: the matriarch — just like her mother — surrounded by family.
I grieve our adult relationship that never had time to flourish. I’ve had to reckon guilt and words left unsaid, always thinking I had more time with her. I envisioned our relationship as adults mirroring how close we were when I was a young child, a mama’s boy. I miss that, I miss her.
I grieve the loss of my Mom. The ambiguous loss.
Dementia is a devastating disease, not only impacting the person living with dementia but also for their family and friends experiencing the loss of a living loved one. I hope to help raise awareness and show a glimpse of the dementia journey for the person and the family, although each journey is different.
September is World Alzheimer’s Month, aiming to raise awareness and destigmatize dementia. Learn more about Alzheimer’s and dementia at Alzheimer’s Disease International.
This was the most difficult to read. Ellen‘s severe injuries from her car accident as a teenager that plagued the rest of her life, and ultimately manifested in dementia, is a very different story than most, I think. The tragedy that she and your family has lived through all these years is heartbreaking. I imagine your writing along with being in therapy helps. My thoughts are with you.