Everything is wrong.
My hands dont work properly. I keep stumbling over my feet. I hear distant chatter, but cant make out whats being said. Im 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 cant see very well in here, even though the lights are on. I swear theres someone standing in the corner over there.
Ive 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 its 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, hed 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 whats 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.
Im 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 Ive found barely supported by anyone, including the agencies charged with making this option a reality.
Its difficult to qualify for Arizonas 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, theyre 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 didnt. But Ive been caring for my 92-year-old mother, who has late-stage Alzheimers disease and whom I refer to as the Duchess of Pela, for going on 11 years now.
During that time, Ive 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 states 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 Im not with her. Then theres training and managing those workers, who often dont 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 Arizonans 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.
Id like to ask the 13 percent who didnt support the proposal if its because they know theyll likely have to jump through fiery hoops to get that short-term help.
And then I guess Id 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 wouldnt spend a chunk of my time off training a stranger about my mothers needs, and the rest of my respite worrying that this latest stranger isnt up to the job?
Because thats 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 mothers to meet LoCretia, the latest trainee sent by the caregiving agency the sixth such agency Ive 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 girls spoon wrangler? the Duchess inquires of LoCretia. Her name was Donald and she flew coach.
Her Majestys 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. Thats 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 youre taking advantage of people with your virtual-dementia thing, I tell him. Youre 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 dont, but hes dodging my question about the purpose of a virtual-dementia tour.
Are you trying to prove that our loved ones with dementia shouldnt live alone? I persist. Or do you just want us to know that its hard to set the table when youre wearing a polyester V-neck and cheaply made sunglasses?
He promises hell 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 Id left my digital recorder on pause the whole time. I have to re-create the entire experience from memory. Im too tired to enjoy the irony of this.
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 states 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, theyd move into a nice, clean facility where theyd 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 Dads monthly pension check. There would be lap blankets and ceramics classes and soft food prepared by a friendly dietitian. Probably thered be shuffleboard.
I dont know what I thought. But heres what Ive 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 dont 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 arent paying cash.
If she werent demented, the Duchess wouldnt approve of me giving up my old life to care for her in her home. She wouldnt 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 hadnt.
On good days, Im proud of having prevented that. But most of the time, Im unhappy there isnt 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 Duchesss health coverage. Im 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 Ive gotten myself into.
Youre never going to die, are you? I ask the Duchess one night as I help her dress for bed. Im going to be stuck here forever, changing your diapers and baking you quiches.
She has six or seven new pinch-chickens, replies my mother, whos 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. Whens he coming home?
Hes gone to Poughkeepsie, I tell her wearily. Hell be back last Tuesday.
Ive gotten good at entertaining myself with silly responses to my mothers demented questions.
If only my own questions were so easily answered. Like, What are you supposed to do if youre not wealthy and dont 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.
Its June, and my aunt has died. Ive traveled to Cleveland for her funeral.
My phone rings as Im trudging through Hopkins International Airport. Its a supervisor calling from the latest home health-care agency Ive hired to help me care for the Duchess.
Listen, Mercy Care didnt tell us you were leaving town and needed respite care, she tells me. We cant send someone over to cover your shift today until we do intake.
I close my eyes.
But Im 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 mothers house, where hell sign a bunch of forms and then stay to train the latest caregiver.
While were 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 shes 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 Im winning a nice prize.
I fall onto a bench in baggage claim. People dont get better with Alzheimers, 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 mothers 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 youve decided shes the first person in the history of the world to improve with Alzheimers disease?
Well, either way, she replies, shes getting the maximum number of home-care hours we can provide. And ALTCS wants us to trim everyones hours. So were 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 Im 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 Ive 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 theyve never applied for ALTCS. I have. Eight times.
The first five applications were declined because the Duchess wasnt demented enough.
Then, she wasnt poor enough.
Larry Shafer, public-benefits consultant with Dyer, Bregman, and Ferris PLLC: Theres no clear set of instructions for ALTCS applicants, and even smart, organized people sometimes just give up.
Courtesy of Larry Shafer
And always there wasnt enough evidence that she qualified for anything ALTCS offered. Id 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 fathers last employer, and a receipt for that bottle of aspirin you bought in 1998.
By the time Id 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 arent 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.
Thats 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 whos 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 Majestys case manager sized her up and decided it should take no more than 17 minutes to shower her, so thats 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; theyve only got so many home-care hours to dole out. The paltry amount my mother receives, Ive been told, is the most I can hope for. When she gets worse, Ill 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? Theyre there to help people! Do you know that when my mother dies, Im 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.
Its frustrating, isnt it? Theres 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.
Im 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 Ive 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 dont. You couldnt possibly know what being a caregiver is like unless youve done it.
Were 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. Its not our fatigue that marks us as members of an invisible group. Its the old person by our side, or in a wheelchair in front of us, that gives us away to one another.
Like clumsy spinsters, were forever being paired up by well-meaning pals.
Oh, you have to meet my friend Dave, someone will say to me. Hes taking care of his mom, too.
Or Ive given your number to Lucy; her husband has dementia. You two should talk.
Suzette Armijo, co-founder of Central Phoenix Advocates for Dementia Awareness, with her grandmother in 2012.
Courtesy of Suzette Armijo
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For Seniors and Their Caregivers Navigating Arizona's Health-Care System, There's No Place Like Home - Phoenix New Times
