Confusion

Alzheimer's and dementia can roughly be divided into three stages, mild, moderate, and severe. Its been a few years that my mother has been in the mild stage--forgetting details, names, repeating stories... all short-term stuff, but easily brushed off along the way... until it was eventually diagnosed. But she didn't share that diagnosis. I worried about her getting old and could see the changes, wondered when I was going to be able to talk her into getting tested, but had no idea that she had already known and chosen to disregard it.

That's not really a surprise--its a handy thing, this forgetting, when you get some information that you don't like.

I found out about the diagnosis in June, when she had a severe hiatal hernia with a twist in it, and had an emergency operation to repair it. She was deeply confused in hospital, worried that her purse had been stolen, distrusted the staff, was insistent that I was downstairs waiting in the car before I even got on the flight to get to Santa Fe, sure she was going home to Gourock from a hospital in Greenock (Scotland).

In a meeting with her several employees to plan for her release, a maid blurted out the question of her alzheimers, and the cat was out of the bag. It all tumbled out. My mother buying the same book on how not to lose your memory--no fewer than five times, each successive purchase quietly returned by an assistant who was undoubtedly threatened with firing if she tipped me off. A caregiver assaulted twice by an woman enraged at being corrected--once, when she insisted that a pellet of cat litter was a vitamin (yes, she snatched it from the poor caregiver and swallowed it). The second time when she insisted on scooping up foundation with broken glass on it to put on her own face. A staff intimidated and bullied, unwilling to reach out to me after being fed stories of a monstrous daughter (controlled by her moneygrubbing son-in-law) who couldn't be trusted but nonetheless would never take their side in a dispute.

And there began the intricate dance. Slowly untangling the fabric of lies, earning trust, learning what was going on and figuring out where to go from there.

Though I am power of attorney for medical issues, my mother's longtime paranoia led her to structure the financial/legal POA as a shared between me and the trust company that manages on my Dad's trust. There are lawyers, trust officers, banks, and a russian doll of investment companies to work with. And then there are predatory vendors--from gold to supplements.They all know my mother's stories of WWII, of being bombed, of how she got to Santa Fe, about her marriage.... and they work it.

I began to speak with her doctors as the medical POA, since she was declared incompetent on release. I approached the lawyer and the various financial folk, to get a sense of what the whole thing looked like and what it mmight look like to gently peel her fingers off the steering wheel, so to speak.

Actually, that is a decent metaphor: she stopped driving after rear-ending another car with an expired license and lapsed insurance. It was just after another visit of mine a a few years ago. In the almost the blink of an eye, she had paid the other guy off, got a lawyer to go to court, paid all the penalties, and bought a new car. A week or so after that, she told me about it--all the other guy's fault, but what are you going to do? They see an old person and blame them, its totally unfair and ageist... She hurt her knee and had other people driving her for a couple of months, "just until my knee feels better." The thought of her back on the road put a chill in my spine and we had a number of really difficult conversations. During that time, her assistant also worked on her, and gently guided her to a "Driver's License" that is simply ID.

She didn't drive again, but face was saved. She firmly seated herself in the story that of course she absolutely could drive, but if anything happened, she would be blamed because of totally unjustified discrimination against a person who happens to be older. What can one do? It just is not a risk I can take. A shrewd strategy to "beat the house."

So how to peel her fingers off this wheel while saving face?

Working with her assistant and her gerontologist, I was able to get her to a geriatric psychiatrist for an assessment, which emerged with a declaration of her incapacity and a prescription for a drug to perhaps slow the advancing dementia down (since halted because of its side effects). I began working with her assistant to manage her affairs, from long overdue home repair projects to outstanding work to complete valuation on her estate, to shifting to a payroll service that actually pays taxes and unemployment insurance for what is now a caregiving team of six people around the clock. It has been a careful balance, and everyone has proceeded with utmost respect and compassion.

The legal structure was relatively clear to work with, thank goodness, and her affairs are generally in quite good order. I didn't have to go to court to declare guardianship, I found no gaping holes of debt or grift or exploitation. Simply a ship on a steady course guided by people serving the ailing captain's best interests. She was faking her competence and they were in some sense helping maintain that illusion--as we all still do.

Her decline had been steady, but increasing in pace, into the middle phase of dementia. Her memory and congnition took a sharp turn downward with each successive trip to the hospital in the last three weeks. This, the gerontologist informed me, is entirely typical--the trauma of each visit means that whatever the baseline state was before, they never come back up to that. That is in normal time--ladle the overcrowding of the hospital and the spectre of covid on top of personal pain and fear and there you are. Grim.

This "moderate" phase of dementia is the hardest, I was told. The lapses are very pronounced and can't be brushed off. The person is generally fairly lucid, but the truth that they are losing their grasp on reality is undeniable and insulting. They become more fearful and paranoid, anxious and belligerent, as the holes in the fabric they have woven become apparent to all. I think my mother quite often now feels like the emporor who has the ghastly realization that she is perhaps not wearing clothes, and it is devastating. She works so hard to snatch up whatever cloth is to hand to cover her nakedness, her vulnerability, but she's not able to do it anymore. And she is keen enough to detect a gaffe by the expressions of those around her (well, laypeople anyway. her caregivers are expert at rolling with her).

When I arrived last week, I came to the house, and we woke her from a nap (she'd been asleep all day, actually) to come sit at the table and have dinner. She was on oxygen, and will be for the duration. She was confused and weak enough to be wheeled from bed in a transfer chair kindly secured by one of the caregivers. She was delighted to see me and we sat together. We went through the ingrained protocol, the requisite questions and courtesies--how was your trip? how is Nuala? How is your husband? etc.

Then she drifted into silence, looking around and (literally) taking stock of the home around her, pointing out the irrefutable truths of her physical surroundings: the grace of the light fixtures installed by my grandmother, the ceiling that reminded her of her own grandparents house, a painting of which she is quite fond.

Eventually, her gaze returned to me and she formulated what must have seemed a strategic inquiry in her mind. "What IS your last name, dear?"

I replied gently, "Davenport, Mom."

I don't mind her forgetting. This is the progression. Indeed, there is a part of me that thinks it would be easier for her if she could put down the bitter resentments she holds, the distrust. I know it would be easier for me if she didn't know I was her daughter: the lightning rod, the precious, the posession that must be controlled.

But the impact to her in that moment... that was hard. I watched the waves of emotion cross her face in an instant. Gobsmacked that I had essentailly just appeared before her, horrified that she hadn't recognized me, deeply chagrined that I saw her forgetting. In a flash, all this replaced by delight mixed with a sharp glint of determination.

"Of course! I'm so sleepy, you see, and the light in here is terrible."