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lighting the mist

Alzheimer’s, A Retrospective: One of the Longest Journeys of Loss

This is a compilation of essays written during the last years of my mother’s life.

~We are in a present moment in which a daughter and a stranger are synonymous.

I. Unexpected

It’s not what I expected. Again. I am relearning this lesson for what seems the thousandth time. How to let go. How to be with what is, as is.

My mother is 78 and her memory is deteriorating. In the last year, she has gone from the typical memory challenges of old age, to signs of dementia: forgetting what she did yesterday, who visited recently, that she is repeating a story she told only an hour before. It was startling when this began to happen on the phone, in conversations while visiting. To witness and acknowledge the layers of short-term memory peeling away to leave only remnants of the past in tact.

My mother is a breast cancer survivor of 15 years with residual cardiac weakness related to chemotherapy. She has Type II diabetes. I expected her final years or months might be impacted by a reoccurrence of cancer or an intensification of complications from diabetes gone awry or poorly tended. Of course, these things could happen, too.

I didn’t expect memory problems. I didn’t expect to hear my mother sound confused at times. She is a woman who has survived by her wits. The vulnerability that emerges when she feels defenseless is painful to witness. All my maternal instincts come to the fore, the desire to soothe, to make it easier, to help her remember. I want to say “It will be okay.” and yet the truth is–I don’t know. Or it won’t be. Not in the ways she would like. She would like to still be in charge of her life, but this is slowly slipping away. This fiercely independent woman, who trusts almost no one, has to accept the fact she is no longer able to navigate on her own. Of course, she can’t consistently remember this either.

Her situation is complicated by the fact my step-father was diagnosed with Alzheimer’s two years ago. While she was always the one to manage their finances and social calendar, she had become their chauffeur, medication dispenser, and health care coordinator. With her memory failing, all these roles are beyond her capacities. The doctor understandably wants to assess her driving skills. She is forgetting to take her own medicine, let alone give my step-father his. Doctor’s appointments are easily forgotten or never made. The bills are not being paid on time. Outside assistance is no longer a kind gesture. It’s become a necessity.

For my mother there is another painful layer associated with all of this and she has been raising it in conversations. Her father faded away into dementia the last two years of his life. His final months were spent in the state psychiatric institution, because there were not adequate resources to care for him at home or to place him in another care environment. The last time I saw him, I was about 14-years old and he was in an open ward with several cots, lying partially dressed atop tangled sheets. He had regressed so far into the past, he thought my mother was one of his sisters and had no recollection of me. It was stark, sad. He was marooned in the past, while his present life circumstances were marked by neglect and isolation. My mother fears this end. She has witnessed it. I’m not sure she can imagine another scenario, even though four of her five children are assisting in one way or another with care. Maybe the simple reality of memory deterioration is that you can anticipate the complete vulnerability of not knowing, yourself or others, not being able to choose for yourself. Then you fear not only forgetting, but being forgotten.

I would be afraid, too. I am afraid, too.

It is up to me and my sisters to find a way to provide reassurance through action. To accept what is, whether we expected it or not. Like my mother can, if she chooses, confront her own fading capacities in the moments of complete recognition that still occur. Maybe as this unfolds, we can be a source of warmth in this time of marked unpredictability and vulnerability. We can do our best to ensure her final months involve a quality care for her whole being, not simply the warehousing of her body.

No, it’s not what I expected, but it is the challenge to be met.

II. Stumbling Toward Grace

It was a choice to lean toward grace and humility. To let go of the two final conversations I had wanted to have with my mother before she dies. My mother is free-falling into the living death of Alzheimer’s, fading away into isolated, sepia-edged memories she recounts repeatedly as if someone has pulled an invisible string to start a story. “It was dusk. Mia and I were walking back from the swimming hole. We may have been 12 at the time….” One has the choice of being patient to the end again, or finding a thread, perhaps nearer to the middle or end and saying gently, “Yes. Is that the time when you kept walking each other back and forth between your houses, neither one wanting to be the one to say goodbye?” My mother will smile then, in recollection of an experience over 60 years old that feels more fresh and potent than the voluminous, unfolding day before her, any sense of purpose, focus, and task no longer relevant.

The two conversations were clearly binned unfinished business. One was to clarify a fact about the abuse perpetrated by her former partner of 11 years, to affirm what I already knew, but still wanted to hear her say: “Yes. Yes, it was like that. He was like that.” I know he was, but something about a parent acknowledging it, who should have been protecting you, would make it more real. Ground it. Help me break through the slight tendency to dissociate or fantasize this one facet of the abuse might have been my imagination. In the past, a preferable choice to the reality.

The other conversation was to acknowledge the ragged road we had traveled as mother and daughter. Yes, to celebrate moments or ways of connection and simple gratitude for my birth, but fundamentally to express my grief at the overall quality of our relationship. My mother recreated with her five children a variation of her own experience of maternal abandonment and loss. During my mother’s childhood, my grandmother was placed twice in the state mental hospital for years at a time. When I obtained her hospital records over two decades ago, an administrator acknowledged she had essentially been “incarcerated,” because that was what happened back then. “It never would have happened today,” he said. While my mother’s physical abandonment of me was limited and episodic, she was emotionally vacant for much of my childhood. The legacy had continued.

I remember my grandmother in small bits. She was short, obese, and dressed in fading gingham dresses. She had long, graying hair worn in a bun and wisps would fall down and curl around her neck, curve around plump cheeks. She smelled like the home that enveloped her: a mixture of flour, wooden floorboards, and antiques from four generations aging into each other. The last provided a foundation of beauty and rarity within an otherwise simple life. She taught me to bake my first apple pie at the small hillside farm where she lived her whole adult life except for the hospitalizations. I don’t think she ever had a vacation, unless one would categorize electro-shock therapy and institutionalization as a holiday. I am unclear as to the reasons for her personal pain. However, she lived with a taciturn husband and was socially isolated. There is a family tale that my maternal great-grandmother left my grandmother’s family when the latter was only four, never to be seen again. (There is speculation she went away to die from terminal cancer.) There is another story that my grandmother may have been forced to terminate pregnancies and these experiences were linked to her mental breakdowns. These stories are too old and uncertain to track down the efficacy of.

My mother has only shared a little information about her relationship with her own mother, enough for me to know it was ambivalent, broken, and painful. As a very small child, her mother had supposedly favored her older brother, splitting between the two of them as good and bad. Although her mother’s first hospitalization was traumatic, it may have provided relief from the emotional and physical abuse of a parent melting down.

I don’t think my mother ever recovered from her experience of maternal rejection. That she went on to have five children of her own had more to do with the poor reliability of birth control in her generation than her desire to parent. Never one to spare words or feelings, my mother told me several years ago that the last two children in our family, myself one of them, were “unwanted mistakes.” Her first pregnancy had resulted in a shotgun wedding. The two in between the first and the “unwanted” were a slippery slope of pregnancies that kept arriving. My mother had become a parent by default. The wreckage that followed was no more or less intentional.

As of today, it is hard to know what my mother remembers beyond the stories she repeats as if telling them anew. Would she remember the one fact I had longed to ask about? As for the other conversation: Would it matter now to tell her that I had grieved for her my whole life? To let her know I understood something of her own pain, because she had shared it with me through unconscious repetition and now I mostly felt empathy, as I recognized my own experience in hers?

As my mother grows more vacant and child-like, returning to the years in which her losses began and crystallized, I cannot ask her to sit with something beyond her depth and capacities. The window of opportunity has closed. I saw it happening and I chose this. In the past few years, I had reached enough resolution on my own. I had been unwilling to dig up the past, ripping up old pain that had quieted, felt mostly appeased. This choice will have to hold.

I have grieved my mother for so long, I have been shocked to learn there could be more. A final unveiling as she melts away into a past I can only imagine. A time, in which she was still a child amongst children, swimming in a pond after a long day’s work in the full heat of summer. A time when I was nowhere in sight and never a desire. But she squeezes my hand at the end of the story each time, a small gesture of connection in this suspended moment of grace, in which she still remembers who I am. This will have to be enough.

III. One of the Longest Journeys

Alzheimer’s is one of the longest journeys toward death. It is not cancer’s cousin with its opportunities for process and intentional goodbyes. Alzheimer’s is a chain of small deaths and resurrections, the zig-zag in and out of remembering and being remembered, forgetting and being forgotten, obscuring the acknowledgement of ultimate loss.

Or maybe there is a personal, selective slice in this, as my mother’s diagnosis so frightened her, we could never hold it together in the light. She brushed against it a few times, acknowledging she was having “memory problems,” a deer-in-the-headlights anxiety framing her eyes. I met her as much as she would allow, offering affirmation, comfort in small, knowing gestures regarding her concrete fears. I assisted her with accessing legal expertise for end-of-life planning. But we never looked at each other with an unwavering gaze and met the truth. She knew from having watched her own father’s demise from the same disease that this would be a slow, painful letting go into Neverland. She chose not to face it, in keeping with the broader template of her life. Denial was always her Plan A, avoidance Plan B. As her child, you were required to participate in the fiction, the skewed view. In the end, her approach to disease and death were no different than her approach to life. I just didn’t realize how painstaking it would be to play my role right up to the end. An end we still await. Or that in doing so, I would forfeit my chance to say goodbye.

Now my mother is both visible and lost in the mist of another world. I have heard that Native Americans hold the affects of Alzheimer’s as simply a different reality. Intellectually, I appreciate the wisdom in this view, the bare truth of it. However, it does nothing for my daughter’s heart, the ache of loss, the inevitability of being caught once again by my mother’s avoidance of intimacy and truth, consistent and unwavering to the end.

IV. A Life Once Inhabited

When I walk into my mother’s living room, the furniture arranged as it has been for decades, she hears my footsteps before she sees me. Peering around the top wing of her recliner, her eyes widen in surprise, inquiry, an edge of fear. She is unsure, quizzical. I pace myself, slowing down, softening my body, giving instinctual cues I mean her no harm and say: “Hi, Mom. It’s Lyndon. I’m your youngest daughter.” She looks at my older sister, Betty, a daily care provider for affirmation it’s ok. I’m not an imposter. Betty responds: “It’s Lyndon, Mom. You remember Lyndon. She’s here to visit.”

My mother relaxes, leans back in her recliner, her eyes still curious, but suddenly re-assured, game. We talk about the weather, how she feels today, the toast or milk before her, any simple conversation in which memory, context, or concept are not required. Unlike a year ago, she no longer repeats a few simple stories of remembrance over and over. Even these keepsakes, fragile scaffolding to a life she once inhabited have disappeared. We are in a present moment in which a daughter and a stranger are synonymous.

When my mother dies it will be the last period in her obituary, a gesture of finality. As of today, indefinable months before her last breath, she has already transitioned. As her mind has disappeared into the holes and caverns of Alzheimer’s and lingers on the edge of the final abyss, her personhood and relationships have faded away in tandem. And because she no longer knows me, I am grieving today. Not months from now when my community will learn my mother has passed away, but today, when her functional death occurred; when our relationship, such as it was, has vanished.

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