What seas what shores what grey rocks and what islands
What water lapping the bow
And scent of pine and the wood thrush singing through the fog
What images return
O my daughter.
Once upon a time I was a software developer. Somewhere along the way I gave it up to pursue a passion for writing and a quieter life. But if you ask me now what I do, and if I were to answer honestly, I’d have to say, “I am the administrator of my mother’s death. And my father’s before her.”
To be clear, I have not been their caregiver during these end times (though I could argue that I was when they and I were younger, when they had difficulty distinguishing between “need” and “desire,” and so did I). Their actual needs in old age outstripped both my physical and emotional capacity, and so I have delegated to others. I don’t pretend that it’s optimal. The assisted living caregivers are harried and overworked and have no time for more than basic care: getting my mother into and out of bed, dressing and undressing her, wheeling her to and from meals, giving her bottled water, draining the catheter bag.
S., the private caregiver who comes three times a week, handles more sophisticated tasks: putting her outfits together when her clothes come back from the laundry, nudging her to engage in activities (she has recently added practicing cursive to word search, though my mother has balked at most other suggestions), cutting and styling her hair, shaving her chin and moisturizing her face, keeping her stocked with toiletries and other small items that assisted living doesn’t provide. They go out to lunch when the weather is nice, and she cooks in her room when it’s too hot or too cold. And perhaps most importantly, she keeps me in the loop when the care of the harried, overworked staff gets a little too careless.
Those who sharpen the tooth of the dog, meaning
(Medication assistance rate increase)
Those who glitter with the glory of the hummingbird, meaning
(Incontinence care rate increase)
Those who sit in the sty of contentment, meaning
(Room rate increase)
Those who suffer the ecstasy of the animals, meaning
(New charges for oxygen use)
I have been told that the sheer quantity of care my mother requires is better suited to a nursing home. At first I told myself that I was resisting the advice because she was, on balance, more alert than the average nursing home resident – able to talk about the authors of Romans and Acts or to produce the occasional bad pun. That is becoming increasingly less the case but now a different issue has arisen. Nursing homes are expensive. And as she approaches ninety years old my mother is running out of money.
Her side of the family is long-lived; I knew this was a possibility. When I first realized that my parents could no longer safely stay in their home I was naive about elder care and overwhelmed at the expense of housing a father with advanced Alzheimer’s and a mother significantly disabled by a stroke. Even the cheapest place I could find was going to drain their assets in a year. Sometimes when I thought about it I couldn’t breathe.
Then my father died unexpectedly of what seemed a simple cold. And amidst the anger that the hospital had punted every single time I asked if he was getting worse, so that I wasn’t with him at the end, and the bewilderment that someone who had been part of my life for fifty years could be suddenly, permanently gone, there bubbled up an uglier feeling: relief. My administrator’s mind was already doing the math: my mother could live on the remainder for years.
It wasn’t that I wanted my father to die. But the cost of his care was astronomical, his quality of life was poor, and every fit of inchoate rage that landed him back in a geropsychiatric hospital ward cost thousands of dollars above and beyond what insurance would cover. I didn’t want him to die. But deep down in a dark place where I’ve found myself more than once these past years part of me wasn’t sorry that he had.
Because I lived with the ravenous beast lurking in that dark place: impoverishment. My parents, their grasp on their finances long since slipped away, didn’t know that it was circling, watching, waiting to strike. But I did.
Are become insubstantial, reduced by a wind,
A breath of pine, and the woodsong fog
By this grace dissolved in place
After my father died I realized I couldn’t let my mother stay on where she was. The five minute response time the facility promised was more like forty-five. Non-mobile residents were deposited every morning in a common area in front of a large TV showing Zumba videos and Fox news all day long and otherwise ignored. Her roommate physically assaulted her for “smelling bad” (it turned out she had an advanced infection that no one had noticed). Deficiencies that had been masked because she previously spent all day in a locked ward with her husband and a better staff to resident ratio were now too glaring to be passed over.
My brother and S. fought me on the move, saying that it was better for her to be among people she knew, however inadequate the care, than uprooted again. We might have stalemated there. But after a hospitalization the facility cited a “serious deterioration in baseline health” and refused to take her back. Her physician said they were lying, that they were engaging in what was known in elder care circles as “dumping,” and offered to challenge them on it.
But I did the math. Their neglect was likely to kill her, as quickly and deliberately as if they pressed a pillow to her face. And while her remaining funds were not large, perhaps cautious investing could stretch them. I told the doctor to let it go – I would take it as a sign and move her somewhere else.
She was angry with my decision. So were my brother and S. But my parents’ paperwork and the law said the final responsibility was mine, and this wasn’t a popularity contest. I had done the math. I had to do what I thought was right.
The new facility offered a small but fully private room. It let disabled residents remain there during the day if they liked (my mother does), and checked on them from time to time. It promised a five minute response time that is more like ten to twenty. It cost half again as much as her previous residence when she first moved in. In the four years that she has been there that cost has jumped to more than double. Every rate increase – medication assistance, incontinence care, room rates – affected her. Every year’s end I would adjust the numbers in our spreadsheet, watching the thin blue line of her finances (my husband was thoughtful enough not to color it red) sinking to the zero point.
In spite of their best efforts at keeping her healthy – and they really have been quite good – occasionally the residence needed to summon an ambulance. And I circled the beast in that dark place as I spoke to doctors and authorized treatments and sat at my mother’s hospital bedside. Wanting her to recover. Wanting her to avoid the future that lay in wait. Meaning Death.
What is this face, less clear and clearer
The pulse in the arm, less strong and stronger—
Given or lent? more distant than stars and nearer than the eye
Whispers and small laughter between leaves and hurrying feet
Under sleep, where all the waters meet.
Finally there is too little money to leave in investments – even a small loss will be catastrophic. And when her savings drop from six digits to five I send a terse email to the assisted living administrator D., asking for a meeting to discuss finances.
D. is petite, well-dressed and well-coiffed, just on the edge of wearing too much perfume without ever quite crossing the line. I am her polar opposite: taller than average, stocky like my father, fond of denim and flannel, my hair always pulled back in a scrunchie, averse to scent and makeup.
She is soft-spoken but hides volcanic depths beneath, triggered by anything that is inconvenient or in her way. We are not so different in that regard, though I hope that I am more measured in my anger. I know that I am not in the position of power here so I try – against my nature – to be deferential. (But I have my limits. When S.’s roommate befriended my mother, D. assumed – without inquiring – that I had some under the table payment arrangement with her and demanded that she restrict her hours, citing the residence agreement. I responded with a sharply worded email demanding to know where in that document it stated that residents were not allowed to have friends. Perhaps scenting the whiff of ombudsman on the wind – as I intended – she said, “I’m sure we all want what’s best for your mother” and backed away. Though the damage was done. S.’s roommate felt unwelcome and seldom visits now.)
I meet with D. in the residence common room. The carpet is a little worn but it is otherwise nicely appointed with furniture stylistically frozen in the late 1950s. This is ostensibly to make residents feel more comfortable, though in fact I seldom see it used for anything but meetings between the administrator and residents’ families. I come bearing printouts of spreadsheets. D. has the head nurse in tow.
She asks if I want coffee or tea. I refuse, having learned the hard way that accepting means pulling one of the already overworked caregivers away from their duties to tend to my little whim, and she gets down to business. “We talked about this possibility when your mother first came to us. We should be able to come to some arrangement – perhaps $1000 or $1500 off the monthly rent, along with some other adjustments.” She taps my knee, her touch as hesitant as her words. “I think I can say this to you and you will understand? It would be better if your mother didn’t outlive her money.”
I understand. I nod. I don’t understand. I push the thought away. That’s why I’m here, after all, to delay coming to grips with that fact. I know what my husband and I can afford to subsidize, and it’s not this. But I’ve heard horror stories about all of the other options.
I begin by running through the current state of my mother’s expenses. D. interrupts me occasionally. “Is incontinence care really that much? Are her medication costs really that high?” Each time the head nurse nods.
“I was wondering,” I say tentatively, “if we could review her medication?” I page through a list. “I see a number of over the counter supplements that seem as if they are already being addressed by diet?”
The administrator shakes her head. “Dr. M. loves her supplements. We’ll look into that.”
She and the nurse spend some minutes discussing how to shuffle the not inconsiderable costs of incontinence supplies. None of the suggestions are optimal. Some of them sound ethically dubious. Finally D. turns to me and says, “Really, the best way to lower costs would be for your mother to go on hospice.”
My eyes widen. “She already said no to that.”
“Well I think if we explained the situation to her – ”
“Oh no.” I forget my deference and cut her off. “She can not be made aware of her financial circumstances.”
“But – ”
“No.” I cut her off again. I can see my mother, hunched in her wheelchair, fingers of her unparalyzed hand tapping out a panicked rhythm, her impending poverty an event horizon that no happier thoughts could breach for even a moment.
D.’s irritated face begins to assemble itself behind her makeup, but the nurse comes to my rescue. “It would probably increase her anxiety, and she is already on Ativan.”
The irritation recedes. “Let me explain how it works. Hospice would cover all of the incontinence care and most of the pharmaceuticals. They would send a nurse once a week to check her vitals and overall health, and a home health aide two or three times a week to help with little things and keep her company.”
I hesitate. Financial considerations are only part of my calculus; I still need to be an advocate for my mother’s well being too. “But you said before that she’d have to give up physical therapy. You’ve seen what happens to her paralyzed arm – ” I mimic it curling in on itself.
“They should be able to do some range of motion exercises to help with that,” the nurse puts in.
“All right. But what about the hospital? My mother says she doesn’t want to go, but what if in the moment she changes her mind?”
“Simple!” D. says brightly. “We call hospice, they remove her from their rolls, she goes to the hospital. As soon as she’s back here, they put her back on.”
I feel as if one of my eyebrows is raising toward the ceiling. I was uneasy with the conversation about incontinence supplies, but this sounds downright fraudulent. The nurse hastily puts in, “Dr. M. would enroll her in hospice for her initial health event – the stroke. So she wouldn’t go to the hospital if she suffers another cardiovascular episode, but given her current condition she almost certainly wouldn’t survive another of those anyway. Her other issues – UTIs, COPD – we can decide on a case by case basis.”
“So,” I say slowly, “this gives her the flexibility to avoid the hospital, or to go – her choice.”
“Yes!” D.’s enthusiasm resembles a parent encouraging a five year old just learning to tie her shoes. I am skeptical, but I am also desperate. The skepticism surges to the forefront when she adds, “Of course, we need to talk about other adjustments. Like S. I know your mother loves her but…if I’m going to make sacrifices, equivalent sacrifices need to be made elsewhere. Perhaps cut one of her days – eight hours or so?”
S. is just about the only thing that makes my mother’s life worth living. I don’t delude myself – as her daughter I don’t come close to filling that role. I want to snap that it’s out of the question, but I know better. I am not in the position of power here and D. is a prickly woman. I smile politely. “When I get home my husband and I will do some math.”
D. is not satisfied with that response and tries to press me harder. The nurse reminds her that they have another meeting, and on that brittle note the discussion ends.
Bowsprit cracked with ice and paint cracked with heat.
I made this, I have forgotten
The rigging weak and the canvas rotten
Between one June and another September.
Made this unknowing, half conscious, unknown, my own.
My husband joins me for the second meeting, to discuss final numbers with D. and to meet with hospice. This time we come armed with a laptop. We have already run scenarios, specifically on how to manage D.’s assault on S.’s hours. S. has gifted an hour a week from one of her five – not eight – hour days, and we have taken on all petty cash expenditures. Together that reduces expenses associated with S. by the percentage D. requires. We have no intention of discussing specifically how.
“I talked to the owners, and they agreed to a $500 a month reduction in rent.” She passes me a Post-It note with the daily rent minus a distressingly small discount scribbled on it. My husband and I glance at each other and he begins typing. This is far removed from the $1000 to $1500 she had offered initially. “I was thinking we could trim further from – ”
“S.’s expenses have already been trimmed by a more than equivalent percentage,” I say. She looks at my husband, who looks back impassively.
“Well, perhaps we could cut M.?” she suggests
M. is a caregiver who works for the facility, who I pay privately to get my mother up in the morning. “My understanding,” I reply, “was that you didn’t have time to fit my mother’s morning routine into your basic caregiver schedule. Who would take on those duties?” I am suddenly grateful for my years of being odd girl out prone to teasing at school: I keep my expression blank and bland as we lock gazes, and after a few moments she looks away and announces that no doubt hospice is here. Before she goes, my husband and I extract a promise from her that room rates won’t increase.
My mood soured, I greet the hospice worker with some small suspicion. She is middle-aged, with a thick Russian accent. She carries a stack of spiral bound notebooks in her bag and uses a flip phone. At least in the echelon of elder care that I’ve dealt with, this is not uncommon: it’s a minor miracle if someone has an email address. She asks detailed questions about my mother’s health, taking copious notes with a ballpoint pen. She responds in the affirmative to all of my questions. Yes, they can provide someone who does range of motion therapy. Yes, they can schedule home health aide visits on days when S. isn’t there to increase my mother’s personal interactions. Yes, they assume all expenses for incontinence supplies, pharmaceuticals, and many durable medical goods. The nurse will call me once a week with an update.
I am, if not ecstatic, at least more at peace than I’ve been for a while. In spite of the sharp drop in D.’s room rate relief, I’ve gained almost a full year of additional funding with few cuts to services and some benefits I hadn’t anticipated. My mother will have more companionship, which she craves. Some light version of physical therapy will continue. Out of what seemed an impenetrable darkness shines a ray of light.
After all of these years, all of these experiences, I should know better.
The garboard strake leaks, the seams need caulking.
This form, this face, this life
Living to live in a world of time beyond me; let me
Resign my life for this life, my speech for that unspoken,
The awakened, lips parted, the hope, the new ships.
Perhaps the most painful lesson I’ve learned (and perhaps should have known all along), is that assisted living is a business, with all of the marketing apparatus that implies. Activities! Restaurant style dining! Personalized care plans! Five minute response times!
While my mother’s current residence largely delivers on the activities – though she refuses to participate – I have seen the dross underlying the glitter of the rest. The rapid response time refers to emergencies – if, like my largely immobile mother, you just want things like a bottle of water or a wheelchair reclined, that can take quite a bit longer. “Restaurant style dining” means enforced assigned seating in a communal room with companions you may or may not like and rules you may or may not want to adhere to (like the banning of cell phones when too many residents with too advanced dementia started shouting their way through dinner). And “personalized care plan” appears to mean being told, after the contract is signed and you’ve paid the community buy in fees, that your parent’s care exceeds what they provide by default and you will have to pay extra.
I could raise a fuss and occasionally I do. When the morning light in the dining room hurt my mother’s eyes I spent weeks haranguing them to move her to a different, darker table. After months of being promised a reflective coating on exterior glass because her room became intolerably hot in the summer, it only magically appeared when I announced I was driving down to put one on myself. And though she was making herself sick with panic attacks it was nearly a year before the facility’s doctor would agree to even the tiniest dose of anti-anxiety medication.
But for the most part my position is fragile. D.’s residence was the least expensive I could find that had tolerable care. Any threat to move my mother would be toothless. Or worse, D. might call my bluff. I would be forced to relocate her, and choose between substandard care or more rapidly draining funds.
And hospice was no different. The nurse who was supposed to check in every week never seemed to be near her phone. I let that go, since S. keeps me updated on my mother’s welfare anyway.
But I was dismayed when I discovered the home health aide was coming at six a.m. on precisely the days that S. was there. When I inquired I was told that those were the hours they had available. I was doubly dismayed when they said they had no one qualified in range of motion exercises. Again I relied on S., who had learned basic stretching techniques from the former physical therapist. Anyway, one of the hospice aides told S., by the time they were done bathing her their hour was up.
At that a dark suspicion began growing in my mind. Shifting bathing to hospice, I reasoned, benefited D. far more than my mother – after all, then her own caregivers wouldn’t need to take the time. I shook my head and dismissed the thought as paranoia.
But then strange charges started showing up on my mother’s bills. The next month the daily cost of her medication went from $14 to $19. Two months later a $7.50 daily charge for oxygen suddenly appeared. Between the two they wiped out nearly half of the savings D. had offered.
I confronted her on both. After petulantly telling me that hospice used a different pharmacy with more complicated packaging she said she’d reduce the rent by the $5 differential. She offered to “split” the oxygen costs by deducting a further $3. The math, of course, says that half of $7.50 is $3.75, but my position is fragile and I could tell D. was reaching the end of her patience.
I’ll probably never know whether all of these irregularities were careless or deliberate. And I suppose it doesn’t really matter. I have no room to act.
What seas what shores what granite islands towards my timbers
And wood thrush calling through the fog
One promise, so far, has been kept – everyone refers to “the company,” and my mother remains blissfully ignorant that hospice is guiding her care. I know her too well after all these years – she’d think we were trying to hasten her death, and explaining that the move was made for financial reasons wouldn’t be any better. She’d tell me that I’d failed her. Perhaps she’d say I was trying to kill her, as she’s told me more than once in anger that I’d killed her husband.
I want to right every wrong. I want my mother to have less anxiety, more comforts, physical therapy every day. But even if I tried to tell her that, she wouldn’t believe me. Perhaps she shouldn’t. I don’t try to justify myself to her because I’m not sure there is a justification. I say to myself that I pick the battles that matter, I say that I did the math. I say that I’ve tried to do what I could with what I had. Will it be enough? And if it isn’t, do I deserve the blame? I don’t know the answer to that question, and the not knowing haunts my nights.
Since I signed the hospice paperwork, Mother’s Day and Father’s Day have come and gone. I approached them both like a person with a toothache, hoping that if I didn’t press on them too hard or move too much there wouldn’t be too much pain. Assisted living administrative staff, hospice – they all tell me I’m doing the best I can with what I have to work with – more conscientious and more caring than a lot of children they know. But they lie about everything else. Why wouldn’t they lie about that too?