Jul
14
The Hotel California
July 14, 2008 | |
Ageis was the kind of place my father would abhor living in if he had the choice. But at this mid-stage of his Alzheimer’s progression, he did not.
It was our third stop on a parade of retirement homes throughout the Santa Cruz area, and my younger sister Jenny considered it her top finalist for three reasons: One, it was spotless. Two, it had a Dementia wing. And three, it was bike-riding distance from her condo. These were all valid reasons to me, the delegated facility-screener, but the third reason pertaining to convenience rather than quality weighed most heavily in Aegis’s favor. I still had my reservations about the place. My first thought was “cold.” Jenny called it “clean.” My father would have called it “expensive.” And that’s why he would’ve hated it.
As we approached the entrance in all its faux grandiosity, predictable ivory columns and shining brass emblematic of the more upscale facilities we’d seen, I’d sensed something more personally familiar. Like I’d been there before…or maybe, stayed there before, overnight. Ageis seemed like a five-star hotel with an age restriction, with the primary distinction being the guest’s length of stay. The difference was rather than enjoying a fleeting getaway these guests were held inside the confines of the resort by electric fence and alarm-wired exits. These guests were permanent residents of a docile purgatory dressed up as a luxury resort. "You can check out any time you like, but you can never leave."
I did my best keep an open mind. More often than not my perspective was split between my father’s and my own eyes. And when this happened I was caught between his extreme budget-consciousness and my own total lack thereof. But this was Jenny’s turf now and if she was altruistic enough to host him in her home town, I would acquiesce to her decision–Not only with the appropriateness of the home but also, the convenience of it to her daily routine. I was more concerned with managing her burden than carrying on my father’s propensity towards an unnecessarily Spartan lifestyle. Although he never considered himself deserved of life’s luxuries, I did. And because I was in control of his finances now, I made the executive decision to spend graciously for the sake of Jenny’s convenience. After all, she would be the one taking on the lion’s share of responsibility. She would be the most compelled to visit, for placing him within bike riding distance of her condo–Which to me seemed both a blessing and a curse.
I assumed my five-page facility interview would be a piece of cake for Ageis, or shall I say, I expected it should be. If they were bold enough to deem themselves The Ritz Carlton of Elder Care, I assumed they’d have their bases covered. After all, this facility was not only the most expensive in Santa Cruz, but it was also nearly double the price of the all others we’d seen. They most certainly should have their ducks in a row. Nevertheless, I touted along my list of 116 questions anyway, rationalizing that at least in the research department; I’d be staying true to my father’s wishes. I was also curious to know what the obligatory $8,000.00 community-fee was being utilized for. Surely it was for something more useful than the Ageis Cadillac–a chauffeured sedan that transported residents to doctor’s appointments. Maybe they were serving caviar and champagne during cocktail hour? It definitely wasn’t for the grounds. The building was located just off the highway convenient to visitors commuting from more upscale suburbs of Northern California–But not so valuable to Jenny, who lived a mere bike-ride away.
I forcibly reminded myself that money was no object. In reality, it wasn’t far from the truth. But the frugal perspective that had been hammered into my brain since birth was difficult to undo. Dad raised me to believe exactly the opposite and for thirty years, he kept me completely oblivious to his financial status. Only after the diagnosis did he finally break down and share his secret. He was a planner, and because his imminent mental decline was on the table, he felt compelled to put a trusted family member in the driver’s seat: He defaulted to me, the daughter with her head screwed on straight.
The Grand Parlor was busy with activity, unusual for a retirement home. There was a pianist in the foyer happily tinkling a waltz and two sets of old people were dancing feebly in the center of the room. The scene was an equal mix of charming and heartbreaking. As bittersweet as it was, I did appreciate the crowd existing outside of their wheelchairs, and that they were doing something besides staring blankly into the distance. It was a nice contrast to Independence Village, my father’s current home, which was considered a progressive step above communities like Ageis because daily care was outsourced rather than all-inclusive. To me, Independence Village was a dressed up nursing home in the absence nurses, or any skilled care for that matter. With no medical care to speak of and no liability to insure, it became a popular option for the value-minded retiree too new at the elder care game to know better, which included us at the time. It was a laissez-faire operation appealing to those who needed meals cooked and linens washed, like my father did in the beginning. After he moved in he grew far more confused—But the staff at Independence Village never mentioned this. Apparently that was not their job, which perfectly illustrates the critical difference between the “Assisted” and “Independent” living. Independent living could be classified as senior citizens housed under one roof plus maid service. And that was all the help my father thought he needed back then. Assisted living offers help in all areas of one’s declining mental and physical condition. Offering services ranging from escorted nature walks to “toileting.” Had we known the distinction at the time, we could have saved Dad the stress and ensuing mental ramifications of moving twice. A transition, we soon discovered, that took years off his life.
It didn’t take long for us to discover Independence Village was the wrong choice. The social worker warned the new routine would take him time to get used to, but after 6 months not only was his new routine still a mystery, but his everyday habits were becoming entirely new obstacles. Accomplishing daily tasks such as dressing and showering turned painstaking. Eventually, to save time and aggravation Dad stopped changing his clothes. There were too many hindrances now. Buttons too tiny to see, laces too complicated to tie, patterns and colors too imperceptible to match, and discerning what was clean from dirty could only be detected by scent, allowing for spills and soils to multiply as the week progressed. Dad reverted to sporting the same outfit Monday thru Thursday, until Lois picked him on Fridays to spend the weekend at her place. Out of respect for her, he would spend half the day attempting to bathe himself– Feeling his way around the shower, testing multiple combinations of pulling, turning and twisting the faucet to start the flow of water. How to go from a flowing spout to shower spray? Which way to turn…or to pull…or to push? Was it the knob…or the handle? Was it the drain or the temperature gauge? This became a merry-go-round of trial and error that could go on for hours, episodes of scalded skin, overflowing tubs and frigid showers becoming dangerously familiar.
After a failed six-month attempt at adjusting to Independence Village, my father grew increasingly stressed. The stress exacerbated the confusion and the confusion kick-started the memory loss. Soon enough, the weekend jaunts to his girlfriend’s place became too much. He would take his frustration out on her, and she on us, and we made bets amongst ourselves how long it would take before she ended it. Within six months their five-year relationship took a genteel turn for the convenient and Lois slowly, but sweetly, began fading away. Her departure inspiring an entirely new onslaught of mini transitions we never anticipated. Dad was fading and fading quickly. We were duped, and yet again, left to frantically trample fires this disease had been igniting for years.
The dementia caught us off-guard for good reason. My father was a fabulous actor. He’d adopted a covert system of coping to shield us from his burden: Sleeping in his clothes rather than changing, sponge bathing rather than showering, sporting the same nylon jacket everyday to camouflage spills from mealtimes. All these shortcuts worked temporarily. He presented himself normal enough. I’m sure the staff at Independence Village was used to it, and his decent appearance was appropriate enough not raise any red flags with visiting friends and relatives. But when I flew out to see him on my third visit, seven months into his stay, I became suspect he wasn’t faring as well as he’d communicated during our bi-weekly phone calls. His paranoia was a bit more difficult to conceal.
“Someone’s stealing my clothes.”
“Dad, why would anyone want your jeans from 1974?”
“Hell I don’t know. It’s either they’re stealing them or they’re hiding them. It happens all the time. That’s why I never know where anything is. People come in here, they buzz around, in, out, all over the place. They never tell me what’s going on…”
I did my best to preserve his dignity by offering suggestions rather than calling out his paranoia. It pained me to see him so helpless.
“Maybe they’re just stuffed up in your closet where it’s hard to see. You have sooooo many clothes Dad. You really don’t need all 200 sweaters.”
“I don’t know who bought me all this stuff but it just doesn’t work. These leather pants are way to heavy.”
He yanked at the top of his pant leg in dismay, a feeble attempt at demonstrating the inappropriateness of leather in June. Never mind he was really wearing Khaki Levis, a former favorite pair.
“Maybe later we can clean out your closet together Dad. We’ll sort everything out where you can see it.”
Solutions…I remember reading this in The 10 Golden Rules for Dementia Care. Don’t argue. Offer solutions.
“OK honey, “ he said, relieved. “That would be real nice.”
That was my method. Listen. Empathize. Strategize. Dad would reach a threshold and I’d find away to cross it. I was full of handy solutions. I decorated his bathroom in red. Despite his increasing blindness, he could still discern the color red and I took it to the extreme. I bought all red bathroom accessories: Shower caddy, toothbrush, sponge, bathmat, comb, even soap. I covered the handle on the faucet with colored electrical tape: Red for hot. His basket of fresh Bic razors placed on a washcloth: Red for sharp. I outlined every switch, knob, and cabinet: Red for on, off, up, down, push and pull. My father’s once serene domicile in beige had been transformed into a caricature lined in scarlet.
The funny thing is, I actually thought my systems would help him. I seriously felt that when I returned next time, Dad would be showering, shaving, and flicking the lights on and off like a pro. I headed back to New York ignorantly satisfied. A false sense of accomplishment packed neatly away in my suitcase: Red for wrong.
When Jenny came to visit the same complaints resurfaced in different variations. After her first day there, just as I did, she came to his rescue with her own set of coping mechanisms. She called me later to give an all-too-familiar report:
“Dad says someone’s hiding his clothes…He can’t find his soft towels, did you move them? He’s cut his face from shaving with dull razors…He can’t find his clothes so I re-arranged his closet…The maids are taking his chewing gum and hiding his favorite jacket…He had no toiletries when I looked in the shower. Nor the basket you mentioned. But I did find six barely-used-bars of strawberry soap on the floor…”
No routine would stick. No strategy could be retained. No matter what we did to Alzheimer’s-proof his daily existence, it wasn’t enough.
By the time we realized he was not suited to live independently at all, it was much later than we wanted it to be. After a year of struggling intensely with daily tasks, Dad was adamantly opposed to the idea of starting all over again at a new place. He was highly resistant to any change or new routine–not that he’d ever established one in the first place. It was of little consequence that he would be moved close to one of his daughters who could visit all the time. It didn’t matter that the place was steps from the beach, or had a view of the mountains, or was properly set up for Dementia care. Never mind the move would be in his best interest. He was not taking kindly to an entirely new transition only to find himself at another place like Independence Village. The place, he cited, “where old people came to die.”
I found it odd when he mentioned being bothered by the presence of these “old people” because as far as I knew, he couldn’t even see them. I began questioning if Dad was indeed bothered by what was truly going on around him, versus what he perceived to be occurring by referencing old precepts and stereotypes. There were many days when his reports of the place were joyful. And for a moment I would exhale and happily dial my sisters to report Dad’s sunny disposition, only to be cut short by someone’s opposite rendition of the same story:
“Dad was crying on the phone. He said he hates it there and there is no way in hell he wants to move to a place like that again.”
His reports would flip flop depending on the day and the daughter. When we all began to compare notes we heard completely different stories. After a while we learned his opinions couldn’t be taken as absolutes, that they were indeed fleeting thoughts that changed at whim, making our choices all the more difficult. We had to make the decision ourselves, and the decision had to be unanimous. This verdict of where we would move him next and what daughter would be in charge was the most challenging we’d faced yet. We loved him so much. We all had our own ideas for our own reasons. We all stood steadfast in our opinions. We all wanted to be the better daughter.
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