Jackie's Goodbye

[ed. Public service announcement: Please. I know it's a bummer but if you have an aging parent, read this. It provides an excellent account of nearly everything you need to know about caring for someone with Alzheimer's, or any other form of dementia - financial, emotional, bureuacratic. It parallels almost exactly the learning and decision-making process I had to go through when my mom caught pneumonia and her dementia suddenly red-lined. Pay close attention: Medicare vs. Medicaid (program restrictions associated with each and required documentation); VA benefits if applicable (time involved to get them and financial requirements - short answer, up to a year or more and in the end not worth it); nursing and assisted care facilities - their various qualifications, services and costs; home health care options; and hospital discharge policies. I'd also add: be prepared with health care directives and power of attorney, and expect strong differences of opinion (between siblings or surviving spouses over the necessity and costs of whatever care is involved). It is a nightmare. Mom, we tried our best. I still miss you so much.]

I became an Alzheimer's caregiver the week of my 29th birthday. It was August 2012, and I was standing at my kitchen counter in Washington when I got a call from a family friend telling me, "We have a problem." My father had been hospitalized with congestive heart failure. For seven years, he'd been the primary caregiver for his older sister, who had Alzheimer's disease. Without his oversight, she had followed his hospitalization with one of her own after collapsing in her bedroom from dehydration, or low blood sugar, or both. My 66-year-old aunt was a widow with no children. My father was a divorced bachelor, and I was an only child. They were my responsibility.

I had thought I would drive the eight hours to my hometown in South Carolina to get my aunt, Jackie Belcoe, settled back at home, and perhaps hire a nurse to come help out during the day. But when I got there, I found a much graver situation than I had expected.

Tucked into her hospital bed at Lexington Medical Center, Jackie looked so frail and sick that it was heartbreaking. She had been a hairdresser for many years and once owned her own salon. She was the woman who taught me to wear lipstick, who never left the house without her mascara on and her blond bob perfectly styled. Now, her hair was matted and unkempt. She needed a bath and her teeth brushed.

In the emergency room, a nurse had cut the urine-soaked T-shirt off her body. When the paramedics found her, she told them she was 19 and lived at home with her parents.

Though her parents were no longer alive, it was true that she lived in the house where she had grown up. I soon learned that conditions there were as deplorable as the state she was found in. Her bed and sheets were soiled, and dirty laundry had been left beside the washer. A trail of feces stained the carpet from the bed to the bathroom. It was clear that Jackie, like many late-stage dementia patients, had become incontinent—a fact that perhaps a caregiver who was also a brother was too ashamed to admit. Full trash bags were piled in the kitchen. Shards of broken cups were scattered on the floor. The mess had attracted pests, and mice and flies had invaded the brick ranch house.

I traced the chaos to my father's own declining health. That spring, after years with a weak heart, he took leave from work. He tried to stay upbeat and not worry me. I had stopped by to see them in recent months, but kept my visit short. It was so hard, seeing Jackie the way she was. Now, I wondered, how had I missed that something was terribly wrong? Or had I just not wanted to see?

For years, I had been pressuring my dad to think about the long-term plan. What would we do if Jackie needed more support than we could provide at home? Should we decide on a facility where we could place her if the time came?

We had to consider a nursing home, I assumed. My hand had been forced. Naively, at first I didn't think about the money involved. It had been a relief when Jackie reached age 65, with all its attendant public benefits. Surely, I thought, Medicare would cover the kind of care she needed.

"There is nothing medically wrong with her," the hospital social worker told me.

I was incredulous. "What do you mean nothing is wrong with her?" I implored. "Her brain is decaying. If she was left alone, she would die."

The social worker informed me that there was nothing wrong with Jackie that warranted a longer hospital stay or a transfer to a skilled nursing home. What she meant was that Jackie needed custodial care—help with eating, dressing, and bathing. She needed a watchful eye, the adult equivalent of day care. She did not need the assistance of a registered nurse or another medical professional who could administer IVs or monitor complicated equipment and treatments.

Medicare pays for hospital stays and short-term, skilled nursing care for older Americans. It does not cover the kind of custodial care Jackie required, and it generally does not pay for long-term stays in a nursing home or a dementia care unit, a fact nearly 40 percent of Americans over 40 don't fully realize, according to a poll from the Associated Press-NORC Center for Public Affairs Research. Medicaid, designed to provide health care to the poorest Americans, can pay for nursing home residence and long-term care. However, in some states, such as South Carolina, it cannot be used to cover room and board in assisted living or an assisted-living facility's dementia care unit—that is, the kinds of places that provide custodial care to those who don't qualify for nursing homes. Medicaid supports some at-home services, but only if states apply for waivers. (There is also a program in South Carolina and other states that can supplement payments to assisted-living facilities for Medicaid-eligible residents, but Jackie, like many other seniors, did not meet its stringent income and resource limits.)

Jackie did not qualify for Medicaid outright: Her assets and her monthly Social Security income of $1,223 disqualified her from South Carolina's basic 2012 Medicaid limits of $2,000 in resources and a monthly income of just over $900 (the limit is now $973). Given her needs, she could have possibly qualified for some in-home benefits—such as visits from a nursing aide—through the state's Medicaid programs, some of which have higher income thresholds. But it would have taken months to get through the paperwork, and even with some Medicaid supports, I knew she needed full-time caregiving, a role my father could no longer fulfill.

My dad fought me when I first suggested moving Jackie to an assisted-living facility. He didn't want to institutionalize her. He also didn't know how we were going to pay for it.

I soon learned what my father already knew: Brochure after brochure in his files showed glossy photos of luxury dementia care units in our area with 24-hour supervision, secured access to prevent patients from wandering, and life-enrichment programs for the memory-impaired. I called them. A family member toured many of them. Most cost between $4,000 and $6,000 a month out-of-pocket. My dad made just under $29,000 a year working as a welder in the maintenance department at the University of South Carolina. His house was on the brink of foreclosure. Years of health crises had left him and Jackie with very little savings. The annual cost of an assisted-living facility with dementia care was more than double what my father made annually and nearly four times Jackie's income. What I had assumed was procrastination or denial on my father's part was really paralysis.

Hospitals, though, do not like you to overstay your welcome, and Jackie had not been a model patient. More than once, she had gotten out of bed and wandered down the hall and into other patients' rooms. She got agitated, and the staff had to physically restrain her, wrapping her in a vest so she could no longer move. She grew so fitful that a doctor prescribed her a regimen of anti-anxiety drugs, hoping she would just go to sleep.

On the day Jackie was discharged, it was nearly impossible to wake her. The combination of medication and a new environment had made her sleeping patterns even more erratic than usual. She appeared lethargic to the point of being catatonic.

Soon, however, she became more aggresive. She gripped the sheets tighter each time I tried to remove them. When I finally had her sitting up, she didn't want to put on the pair of pants I had brought her. I lifted her hospital gown to put them on her myself. "Stop! Stop!" she yelled. "What are you doing?" In a flash of anger, she pulled her fist back to hit me. She relented when I grabbed her hand.

"What are you doing?" she kept repeating, as we fought over getting dressed."What are you doing?"

The truth was I didn't know what I was doing. And I didn't know what we were going to do.

by Tiffany Stanley, National Journal |  Read more:

Images: Adrià Fruitós and Stanley Family