For Seniors and Their Caregivers Navigating Arizona's Health-Care System, There's No Place Like Home

For Seniors and Their Caregivers Navigating Arizona's Health-Care System, There's No Place Like Home
Adría Fruitos

Everything is wrong.

My hands don’t work properly. I keep stumbling over my feet. I hear distant chatter, but can’t make out what’s being said. I’m supposed to be doing something — what was it again? Oh, right. Find a sweater, write a letter, set the table — is that the right order? Shit. I can’t see very well in here, even though the lights are on. I swear there’s someone standing in the corner over there.

I’ve been stumbling around an apartment at the Terraces, a senior-living facility, for several minutes now. I have virtual dementia, courtesy of something called Second Wind Dreams, a nonprofit that offers educational programs about aging. This one is called the Virtual Dementia Tour, and it’s meant to mimic the muddled commotion that demented people endure.

When I arrived, a nice fellow named Dannis gave me a pair of rubber gloves to put on, and then a pair of gardening gloves (one of them inside out) to wear over those. Scratchy inserts went into my shoes, and iPod headphones playing random sounds and a fuzzy radio broadcast were clamped over my ears. Dannis handed me a pair of dark glasses with round stickers over the lenses, and led me to the door of a Terraces unit.

“Go inside,” he’d instructed. “Find the tan sweater and put it on. Find the book and turn it to page 73. Set the table for four. Write a letter to your family and put it in an envelope. Locate the phone and call home.”

After a while, I emerge in an ugly tan pullover, having arranged plastic flatware and paper plates, scribbled an angry letter (“Dear Family, thanks for all your help caring for Mom!”) and made a pretend phone call to my own house. It was simple work made unpleasant by the stuff in my shoes, the sight impairment, and the bulky dollar-store gardening gloves.

“I get it,” I say to Dannis as I peel off the gloves and the sweater. “You want to demonstrate how hard it is for demented people to do stuff by altering my sensory abilities. But what’s the bigger point?”

Instead of answering, Dannis hands me a multiple-choice quiz. Questions include “Are you relaxed?” and “Do people with dementia get the care they need?”

At the bottom, an essay question asks, “What will you do differently after the Virtual Dementia experience?”

I scrawl, “Drink rat poison!” and head for my car.

I’m only half kidding. Suicide seems like a better answer to old age than being shoved into a nursing home, a solution this virtual dementia sideshow is obviously promoting. The idea of keeping our elderly at home — the term used in the elder-care industry is “aging in place” — is one I’ve found barely supported by anyone, including the agencies charged with making this option a reality.

It’s difficult to qualify for Arizona’s version of Medicaid, which requires that you be really sick and really broke before they offer strictly controlled and usually inadequate services. Veterans Administration benefits are also hard to come by, and once an old person secures either of these, they’re exempt from receiving services from any other agency.

And anyway, who wants to take care of their aged parents in the first place?

I certainly didn’t. But I’ve been caring for my 92-year-old mother, who has late-stage Alzheimer’s disease and whom I refer to as the Duchess of Pela, for going on 11 years now.

During that time, I’ve learned just how badly the elder-care system is broken. Underfunded, it relies on an unreliable and mostly unskilled workforce of underpaid babysitters to look after people who want to live out their lives at home. And while the state appears to support this idea with various programs and agencies to finance and promote home health care, those programs and agencies are never enough.

That means that the rest of the work falls on schmucks like me. I maintain two full-time jobs and spend 55 caregiving hours each week to patch the holes in the leaky system of keeping my mom in the house where she has lived for the past 50 years.

Doing so has meant performing bureaucratic backflips while applying for the state’s version of Medicaid, then working with a case manager to supervise a program contractor who facilitates my relationship with the home-care service contractor who sends respite workers to care for my mother when I’m not with her. Then there’s training and managing those workers, who often don’t show up or leave the agency without notice.

Last year, a study by the American Association of Retired Persons (AARP) estimated that more than 800,000 people are looking after a loved one rather than dumping that job onto an elder-care facility.

The average family caregiver is a 61-year-old female looking after someone 70 or older.

Sixty-three percent use their own money to help provide care, and 68 percent modify their work schedules to accommodate a caregiving plan. According to the study, 87 percent of these people support a proposal that would provide short-term help from a home health aide so they could take a break.

I’d like to ask the 13 percent who didn’t support the proposal if it’s because they know they’ll likely have to jump through fiery hoops to get that “short-term help.”

And then I guess I’d want AARP to explain just how short-term that short-term help might be. Would this home health aide be trained to care for old, demented people? Could I have the same person each time, so I wouldn’t spend a chunk of my “time off” training a stranger about my mother’s needs, and the rest of my respite worrying that this latest stranger isn’t up to the job?

Because that’s how in-home care tends to work. After beating our brains out on a rock to qualify for financial assistance, those of us looking after loved ones typically wind up spending that assistance in a profoundly unreliable system.

After stumbling through my virtual dementia experience, I head back to my mother’s to meet LoCretia, the latest trainee sent by the caregiving agency — the sixth such agency I’ve hired in two years — to sit with the Duchess twice a week. When I introduce them to one another, my mother beams.

“Are you half of that other girl’s spoon wrangler?” the Duchess inquires of LoCretia. “Her name was Donald and she flew coach.”

Her Majesty’s new caregiver turns to me. “Do she always talk that way?”

“Often,” I reply. “Have you worked with dementia patients before?”

“Yes,” LoCretia assures me. “That’s that thing where they forget stuff, right?”

While my mother and her new caregiver become acquainted, I phone the publicist at Second Wind Dreams.

“I think you’re taking advantage of people with your virtual-dementia thing,” I tell him. “You’re trying to scare us into putting our loved ones into care facilities. Do you get a kickback from the Terraces for every room they rent after you frighten people?”

He swears they don’t, but he’s dodging my question about the purpose of a virtual-dementia tour.

“Are you trying to prove that our loved ones with dementia shouldn’t live alone?” I persist. “Or do you just want us to know that it’s hard to set the table when you’re wearing a polyester V-neck and cheaply made sunglasses?”

He promises he’ll ask somebody and get back with me. He never calls back. When I go to transcribe the recording I made of my virtual-dementia tour, I discover I’d left my digital recorder on “pause” the whole time. I have to re-create the entire experience from memory. I’m too tired to enjoy the irony of this.

click to enlarge The Duchess of Pela on her 92nd birthday. - TODD GROSSMAN
The Duchess of Pela on her 92nd birthday.
Todd Grossman

To be fair, no state budget is vast enough to offer round-the-clock home health care to those in need. The average payout from the Arizona Long Term Care System (ALTCS), our state’s version of Medicaid, is between 20 and 30 hours per week. Lower-income states, particularly those in the South, receive more federal funds. But because those dollars are stretched farther in poorer communities, the cost per case tends to be even lower than it is in Arizona.

Before becoming a caregiver, I suppose I thought my parents would live to be 100 and die quietly in their sleep on the same night, never having been especially sick.

Or maybe I thought when they were no longer able to care for themselves, they’d move into a nice, clean facility where they’d receive loving attention from smiling nurses who felt a calling to look after the elderly. This wonderful place, I suppose I surmised, would be paid for by Medicare and Medicaid, by insurance policies and Social Security and maybe part of Dad’s monthly pension check. There would be lap blankets and ceramics classes and soft food prepared by a friendly dietitian. Probably there’d be shuffleboard.

I don’t know what I thought. But here’s what I’ve come to know: The average old person dies within a year of admission to a nursing home, according to a 2015 study by the Journal of the American Geriatrics Society. The lousy facilities — and there are a lot of them — cost about $7,000 a month per person, and the better ones typically don’t accept payment from either Medicaid or extended-care insurance policies, which usually only pay a percentage of rent, anyway. Even the places that do take these forms of reimbursement only keep a small percentage of beds for clients who aren’t paying cash.

If she weren’t demented, the Duchess wouldn’t approve of me giving up my old life to care for her in her home. She wouldn’t like that my husband has taken a second job to help pay her bills. But according to that JAGS study, she would have died a decade ago if we hadn’t.

On good days, I’m proud of having prevented that. But most of the time, I’m unhappy there isn’t more support for people who choose to keep their loved ones at home. I worry about what will happen if our new president makes good on his promise to dismantle the Affordable Care Act, which may affect the Duchess’s health coverage. I’m angry that my very large family has refused to pitch in. The rest of the time, I try to keep a sense of humor about the mess I’ve gotten myself into.

“You’re never going to die, are you?” I ask the Duchess one night as I help her dress for bed. “I’m going to be stuck here forever, changing your diapers and baking you quiches.”

“She has six or seven new pinch-chickens,” replies my mother, who’s been speaking mostly in third person for several months now. “Why does she eat with the shades drawn?”

“Maybe she likes to dine in the dark,” I reply, leading her to her bed with the safety rails that keep her in at night.

“Where is her husband?” she asks about my father, dead three years now. “When’s he coming home?”

“He’s gone to Poughkeepsie,” I tell her wearily. “He’ll be back last Tuesday.”

I’ve gotten good at entertaining myself with silly responses to my mother’s demented questions.

If only my own questions were so easily answered. Like, What are you supposed to do if you’re not wealthy and don’t want to put your mom into a nursing home? And Is this as good as it gets?

For people who opt to care for our own family members, the answer to that last one is “Pretty much, yes.”

There are more caregivers in need every day. And many of them, overwhelmed by the lack of services and the financial and emotional strain of keeping loved ones at home, are ready to be talked into giving up altogether.

It’s June, and my aunt has died. I’ve traveled to Cleveland for her funeral.

My phone rings as I’m trudging through Hopkins International Airport. It’s a supervisor calling from the latest home health-care agency I’ve hired to help me care for the Duchess.

“Listen, Mercy Care didn’t tell us you were leaving town and needed respite care,” she tells me. “We can’t send someone over to cover your shift today until we do intake.”

I close my eyes.

“But I’m in Ohio,” I reply. “And the shift I need covered begins in less than an hour.”

“Yeah, I know,” is her cunning response.

I hang up and call my husband, who agrees to leave work and meet someone from the agency at my mother’s house, where he’ll sign a bunch of forms and then stay to train the latest caregiver.

While we’re talking, I get a call from my new case manager at Mercy Care, the program contractor that approves the home-care services my mother receives. She says she’s decided, after her most recent assessment, to withdraw a big hunk of those services. “Because your mom is doing so much better than when ALTCS approved her two years ago!” she announces, as if I’m winning a nice prize.

I fall onto a bench in baggage claim. “People don’t get better with Alzheimer’s,” I begin, trying to keep my voice calm. “And I was there when you did that assessment. Remember? You spent a half-minute in my mother’s company, and the rest of the time with me, discussing how dependent I am on these services. You said hello and shook her hand, and from that you’ve decided she’s the first person in the history of the world to improve with Alzheimer’s disease?”

“Well, either way,” she replies, “she’s getting the maximum number of home-care hours we can provide. And ALTCS wants us to trim everyone’s hours. So we’re taking six of hers.”

She pauses for a moment. “Have you thought about placing your mother in a facility?”

I occasionally awaken from nightmares in which I’m being chased by a box of ALTCS forms.

People assume the worst part of caring for my mother is that she rarely recognizes me. Or that I’ve emptied out my savings account and busted my retirement fund to keep her home. Or that I have to change her diapers several times a day.

They think these things are awful because they’ve never applied for ALTCS. I have. Eight times.

The first five applications were declined because the Duchess wasn’t demented enough.

Then, she wasn’t poor enough.

click to enlarge Larry Shafer, public-benefits consultant with Dyer, Bregman, and Ferris PLLC: “There’s no clear set of instructions for ALTCS applicants, and even smart, organized people sometimes just give up.” - COURTESY OF LARRY SHAFER
Larry Shafer, public-benefits consultant with Dyer, Bregman, and Ferris PLLC: “There’s no clear set of instructions for ALTCS applicants, and even smart, organized people sometimes just give up.”
Courtesy of Larry Shafer
And always there wasn’t enough evidence that she qualified for anything ALTCS offered. I’d deliver a giant box of documents to the Arizona Health Care Cost Containment System (AHCCCS), which oversees ALTCS, and a month later one of their agents would call and say, “We need three more bank statements, a letter from your late father’s last employer, and a receipt for that bottle of aspirin you bought in 1998.”

By the time I’d get these things together, my application had expired and I had to start over.

Amazingly, Arizona has it better than many other states when it comes to Medicaid programs for the elderly. Here, AHCCCS operates under a federal waiver program that exempts us from certain federal statutes and regulations prohibiting in-home care services to people who would otherwise be in a facility.

Prior to 1991, the federal Medicaid program only compensated those living in institutions. Today, that program has been broken into two federally funded parts: ALTCS, which provides financial services to fixed-income seniors and disabled people, and the ALTCS Acute Care Program, for low-income families who need short-term assistance.

Folks shooting for ALTCS work their way through a complex list of more than 50 demographic categories — age, income, sickness, current assets — hoping to qualify under any of these. While some populations are covered by all states, not everyone is covered under the same circumstances, nor for the same services. As a result, an old lady eligible in one state might be ineligible in another.

In a recent report from the Kaiser Family Foundation Commission on Medicaid and the Uninsured (which refers to Medicaid as “lofty in its goals but often miserly in its actual impact on people”), 60 percent of Americans who need assistance aren’t covered by Medicaid.

Arizona ranked among the top 10 states with the toughest eligibility requirements. And on the State Long-Term Services and Supports Scorecard, Arizona placed 21st out of 50 states, based on low scores in affordability, access, and quality of care. (Minnesota tops the list for elder-care assistance.)

Ultimately, ALTCS benefits the state, not the patient or his caregiver: Arizona has figured out how to keep its Medicaid “budget neutral” by relying on unpaid help by family members while providing them with a minimum of assistance.

What I needed was something more than minimum assistance in order to keep my mother in her home. Medicare provides her primary insurance with separate plans for doctor visits, prescription coverage, and hospitalization. Her grossly expensive and completely useless extended-care policy, which routinely reduced its benefits, repeatedly denied my claims, and socked the Duchess with double-digit annual rate hikes, covers nothing if she lives at home.

And so, in order to qualify for ALTCS, I spent every penny my parents had. I hired $40-an-hour respite workers, which allowed me to go home each day at 3 p.m. and which emptied out savings accounts into which my folks had been stashing money for 67 years.

Once they were broke, I applied for ALTCS, an agonizing process that required hundreds of hours of financial-record gathering and a seemingly endless series of forms that needed filling out. After two years and seven rejected applications, during which time my father died without ever having received benefits, ALTCS came through — with what amounted to a little more than two days’ worth of home health-care coverage each week.

That’s generous, I am told, by ALTCS standards. The other five days each week are up to me.

After qualifying for ALTCS, I selected from a list of three program contractors, which are sort of a cross between an insurance company and a grouchy step-uncle who’s stuck babysitting you.

The Duchess was assigned a case manager who decided how many hours per week she needed in order to be cared for in her home — a total figured on a per-task, minute-by-minute basis.

Her Majesty’s case manager sized her up and decided it should take no more than 17 minutes to shower her, so that’s how many minutes I got in the “bathing” category. The Duchess was given 15 minutes of paid assistance each day at breakfast.

“But she likes two four-minute eggs,” I explained to her case manager. “And a good cup of tea should steep for at least 10 minutes.”

“Try serving her coffee,” she replied. “Maybe an omelet.”

Case managers have to be stingy; they’ve only got so many home-care hours to dole out. The paltry amount my mother receives, I’ve been told, is the most I can hope for. When she gets worse, I’ll have to work more hours caring for her than I already do.

“Why?” I demand of Larry Shafer, a public-benefits consultant with Dyer, Bregman, and Ferris PLLC, a local elder-care firm. “Why do they make it so difficult? They’re there to help people! Do you know that when my mother dies, I’m supposed to give her house to ALTCS, in return for the services they provided?”

Shafer knows. He used to work in the AHCCS eligibility department, and his first experience with ALTCS was helping his grandmother qualify for the program back when he was still in college.

“It’s frustrating, isn’t it? There’s no clear set of instructions for ALTCS applicants, and even smart, organized people sometimes just give up. But the process is difficult because the state has to make its ALTCS money last. Those state and federal guidelines are in place to make sure the people who are entitled to this program are the ones receiving it. As a taxpayer, I applaud that. As an advocate working with people trying to qualify for ALTCS, I feel your pain.”

Larry tries to tell me about the ALTCS family caregiver program, which pays people a pittance to look after our loved ones, but I interrupt him.

“I’m on it,” I tell him. “I took the certification class. They taught me how to wash my hands and how to tell if my mother is dead or just sleeping. The guy who sat next to me talked on his phone the whole time and the instructor spent more time discussing which pizza place we could order lunch from than she did teaching us CPR.”

At the end of the day, we were given a 100-question open-book test, I tell Larry. The real lesson was why so many of the caregivers I’ve employed are terrible at their jobs: An orangutan could pass this class, which is the only official training these home health-care workers receive. I use the income from the program to pay for a revolving door of respite workers, so I can occasionally go home for a few hours.

Larry chuckles politely. “I know how frustrating being a caregiver can be.”

I hear that a lot, and I understand that people mean well when they say it. I like Larry, so I leave him alone.
But what I want to say is, “No, you don’t. You couldn’t possibly know what being a caregiver is like unless you’ve done it.”

We’re a secret society. We recognize one another in grocery store aisles or in line at the bank. We exchange long, meaningful looks of encouragement, nod weary heads in silent greeting. It’s not our fatigue that marks us as members of an invisible group. It’s the old person by our side, or in a wheelchair in front of us, that gives us away to one another.

Like clumsy spinsters, we’re forever being paired up by well-meaning pals.

“Oh, you have to meet my friend Dave,” someone will say to me. “He’s taking care of his mom, too.”

Or “I’ve given your number to Lucy; her husband has dementia. You two should talk.”

click to enlarge Suzette Armijo, co-founder of Central Phoenix Advocates for Dementia Awareness, with her grandmother in 2012. - COURTESY OF SUZETTE ARMIJO
Suzette Armijo, co-founder of Central Phoenix Advocates for Dementia Awareness, with her grandmother in 2012.
Courtesy of Suzette Armijo
We talk. In support groups, during caregiver shift changes, in text messages and seated before plates of rubber chicken at dementia-care fundraising dinners. We bond over opinions on the best adult diapers and share tips on how to cheat the system to get more caregiving hours.

“Caregiving takes a village,” artist Holly Schineller, whose mother has frontotemporal dementia, tells me.

“But it’s a cobbled together village of circus freaks. At one point, I was using free caregiving services from Mormons, because my mother kept joining all these churches — Korean Christian, Scientology, Mormon — and the Mormons were coming over twice a week to take care of her, hoping she’d convert. I figured, ‘Okay, she’s not Mormon, she’s not going to convert, but these nice people are helping me out.’ In a way, I was taking advantage of them. On the other hand, the state was taking advantage of me and my desire to help my mother. It’s crazy, but it’s what we have to work with.”

Holly and I agree that support groups are great, but she doesn’t have time for them, and I don’t want to talk about caregiving when I’m not doing it. Instead, I phone other caregivers I know while the Duchess takes her afternoon nap.

“My father is 88 and wanders all over the neighborhood without any pants,” my friend Denise tells me while my mother snores in the background.

Denise and I like to out-miserable one another.

“How awful,” I reply. “My mom tried to eat a trial-size deodorant soap today. How’re you sleeping?”

“I haven’t slept since November,” Denise says. “Hey, I have to go, my dad’s trying to wipe himself on the poodle.”

I hang up and call Sandy, a woman I met when we both appeared in a documentary about Alzheimer’s caregivers. Sandy remembers how, during breaks in the movie shoot, I would telephone the caregiving agency and yell at them for forgetting to send respite workers. Like mine, Sandy’s mother is 92. I like Sandy because she isn’t afraid to complain.

“I quit my job last year to stay home with my mother,” she reminds me.

“Mom gets $1,500 a month from the VA, plus 12 hours a week of respite care. I cover everything else. The amount of money we save the government by caring for our parents is huge.”

Sandy looked everywhere for financial and caregiving support. CIGNA was useless; the Area Agency on Aging put her on a waiting list. She eventually hired a consultant to coach her on what to say to get the most from the VA. She hates that doctors and social workers keep telling her she’ll have to eventually place her mother in a facility.

“Every time I hear that, I want to slap someone.” she admits. “It feels like no one, even medical professionals, wants me to keep my mother at home.”

At a screening of the dementia movie, I run into Lucinda, an old friend who moved to Glendale to care for her demented parents.

“What’s more pathetic than a middle-aged gay man taking care of his demented mother?” she asks, giving me a big hug.

“A 64-year-old divorcee who’s taking care of both her parents!” I reply, hugging her back.

“Tell me about the time your dad mistook you for the toaster,” I whisper to her as the theater lights go down.

“He tried to stick bread up my nose,” she hisses in the dark. After the briefest pause, we both burst out laughing.

While the movie plays, I sit with Suzette Armijo, who co-founded Central Phoenix Advocates for Dementia Awareness, a caregiver support group. While taking care of her late grandmother, Suzette discovered that the best approach to caregiving was to wing it.

“There’s no single solution,” Suzette says. “You have to get good at patching things together. You take a little help from here, a little from there. That doesn’t work for every caregiver, and they can get scared. Which leads to people being placed in facilities before they’re ready.”

After a while, our friend Rosie joins us. I catch her crying during the screening.

“Is it because everyone’s forehead is so shiny?” I ask, pointing to the movie screen. “There was a makeup person on set, but she must have run out of powder or something.”

Rosie smiles through her tears. “My mom died more than a year ago,” she sniffles, “and I still blame myself. The place I put her in was a dump, and she was miserable. She kept getting thrown out of places. In the last place, she fell because no one was watching her, and she died. How am I supposed to stop thinking about that?”

I get it: Some people can’t, or won’t, take care of their loved ones.

It’s cheaper for the state to let people age in place when there’s someone working for free to keep ailing family at home. The state saves additional revenue, according to Arizona Caregiver Coalition executive director Cindy Findley, by reimbursing private care homes at a rate of $2.38 per hour for each hourly employee. If a private-pay care home is charging $3,000 a month, ALTCS typically pays a  little more than half that amount, Findley explains.

click to enlarge U.S. Rep. Kyrsten Sinema: “Arizona has little money invested in caregiver support. I don’t think that’s going to change in the future.” - COURTESY OF KYRSTEN SINEMA
U.S. Rep. Kyrsten Sinema: “Arizona has little money invested in caregiver support. I don’t think that’s going to change in the future.”
Courtesy of Kyrsten Sinema
She admires those facilities that designate a certain number of “ALTCS beds” at a financial loss — something no facility in Arizona is required to do.

“But it’s better to rent a room at half price than to leave it empty,” I remind Findley.

“True,” she agrees. “But think about all the ALTCS hassle — the paperwork, the billing these facilities have to do. They’re losing money and doing all that extra work because they care about our aging community.”

“People think your troubles are over once you find the right place,” says Debbie Thelwell, a home hospice nurse who placed her husband in a facility after his frontotemporal dementia caused him to become violent.

“That’s never true. I had to find $5,000 to pay for the first month up front, because ALTCS hadn’t come through. I had to furnish his room, because it was empty. They never knew what to do with him, and called me every day. One day I said, ‘I thought he was there so you could take care of him, instead of me?’ After that, they started sending him to the ER when he misbehaved. The last time they did, they told me he couldn’t come back.”

Several awful facilities later, Debbie’s husband died. He was 52. Like my friend Rosie, Debbie wonders if she made the right choice by placing her husband.

“I hear that a lot,” Amy Goyer tells me.

Goyer is AARP’s family and caregiving expert. She moved to Arizona eight years ago from Washington, D.C., to care for her folks. Her mother has since died, and her 93-year-old father lives with her. Even with his long-term care insurance, a healthy pension, and financial help from the Veterans Administration, it’s still not enough to cover his expenses, which would be even higher if he lived in a facility.

“People always say, ‘I’ll go into a facility, I don’t want to bother my kids,’” Goyer says. “I don’t think people wake up in a lousy care home and think, ‘This is better than bothering my kids.’ Also, every study we’ve done tells us we’re an aging population, and there won’t be enough facilities in the future to accommodate the number of elderly in need. That means more people will be cared for at home, and what are we doing to make sure that can happen?”

I was sort of hoping Goyer, who wrote a book titled Juggling Life, Work, and Caregiving, could tell me that.

I try Congresswoman Kyrsten Sinema, who’s worked closely with AARP on home health-care issues of the elderly. It’s a subject close to Sinema’s heart: Her aunt is the primary caregiver for her grandmother, who has Alzheimer’s.

“Arizona has little money invested in caregiver support,” she explains. “I don’t think that’s going to change in the future.”

Sinema has sponsored a series of bills aimed at providing relief, including one that would assign Alzheimer’s patients additional Medicaid assistance. It’s not much, she admits.

“But if you introduce legislation that asks for money, it won’t go anywhere. The federal government is broken, and the national deficit is $19 trillion. Nothing’s going to get funded any time soon.”

Meanwhile, Sinema is hosting family focus groups, and has launched a series of “resource fairs” designed to help caregivers get the biggest bang for their buck. She’d like to launch a program that would educate the public about what to do before Alzheimer’s turns up in their lives.

“Right now, there’s no money to solve these problems. But the real problem is the government doesn’t recognize how big this need is, or what it will be like in 20 years.”

Sinema’s friend Dana Kennedy calls our long-term care system “a multitude of Band-Aids.”

Kennedy, the state director of AARP, felt rushed when she recently proposed a Congressional bill that would allow caregivers to apply for an annual tax credit of up to $1,000.

“Our testimony was stuck at the end of the meeting, and I was given three minutes. The proposal passed through committee, but now I have to get a hearing for the bill, and I’m told the Senate isn’t interested. We’ve got a long road ahead of us.”

click to enlarge Arizona AARP director Dana Kennedy: Our long-term care system is “a multitude of Band-Aids.” - COURTESY OF DANA KENNEDY
Arizona AARP director Dana Kennedy: Our long-term care system is “a multitude of Band-Aids.”
Courtesy of Dana Kennedy
Indeed. Although Arizona has a better economy than many states, we also have a larger retirement community — and more old people means more clients lining up for services. While ALTCS does an okay job with the resources available to them, they do it at the expense of family members like me, who provide the bulk of the home health-care our elderly receive. The result is that fewer families are caring for their own these days.

Often, it seems like the system is working against those of us who want to keep our loved ones at home. A few days after I return from Cleveland, I receive an e-mail from the new case manager I demanded after the last one decided my mother needed less help.

“Ultimately,” he writes, “ALTCS wants members and families to know when home-based services become too difficult to manage, the other option is placement.”

I wonder if the state knows that ALTCS is suggesting I give up, that I allow my mother to become a greater financial burden on the state by “placing” her, all because I pointed out that the respite workers often don’t show up, the hours aren’t enough, and the programs are mostly lacking.

I don’t bother to say so, when I write back. Instead, I invite the new case manager over to meet the Duchess. He shows up the following week with his supervisor, Marie, in tow.

“Your hat is a friend of hers,” my mother says when I introduce the Mercy Care people. “Do you want lamb chops, or a shovel?”

“Alzheimer’s!” I stage-whisper, then usher them into the other room. “I plan to appeal your taking away some of my mother’s benefits,” I tell them once they’re seated. “I understand I’m allowed to do that.”

“You can,” Marie agrees. “But your appeal will just be denied.”

I count to 10 before replying.

“You realize she’s going to get worse, not better,” I finally say. “How is it helpful for you to offer me less help when I obviously need more?”

The nice woman seated in my mother’s spotless living room offers the tiniest shrug. “Well,” she says, “you chose to take care of your mother at home. And this is just how it goes.”
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Robrt L. Pela has been a weekly contributor to Phoenix New Times since 1991, primarily as a cultural critic. His radio essays air on National Public Radio affiliate KJZZ's Morning Edition.
Contact: Robrt L. Pela