Slow Dancing with a Stranger (15 page)

I was done with trying to support my mother's illusion of independence. She was coming back to my house with emotional baggage that reopened relationship wounds, which I had buried as long-forgotten history.

The next morning, Jason pushed my mother's wheelchair
through the back entrance of the house. “You told me I was going home,” my mother said defiantly, but the home she longed for now was her childhood house in a Jewish immigrant enclave in Philadelphia. She did not remember the apartment on the Jersey shore. She asked where her parents were and when they would arrive to take her home.

I promised her that this was a temporary visit until I could drive her home, but first we had to interview someone to go with her. Suddenly, her gaze fixed on Harvey asleep in his wheelchair in the family room. No longer ambulatory, this is where he now spent most of his days. We tried to move the wheelchair to different parts of the house based on the best place to catch the sunlight to warm his face while he slept. He was not even aware of my mother's presence.

“Who is that man over there?” my mother demanded. “What was his name—the one you married? He didn't deserve you. I hope you got rid of him.”

“Mother, this is Harvey, but he has been sick for many years. Just because you never liked doctors doesn't mean he wasn't a good man,” I replied. “Remember how he helped us with Daddy when he was sick?”

I tried to change the conversation, but not before my mother asked again, “So when are my mother and father going to pick me up?”

Jason wheeled her into the dining room. Photos of the great-grandchildren were strategically placed in front of crystal wine decanters that I hadn't had time to put away. I wondered if she noticed the glass dining table for ten had been pushed off to the side to make room for a queen-size bed. I had draped the open archways so that she could not see the threatening stranger in the adjacent room. The nurses quickly learned to keep them apart.

After two days, I was already at my wit's end. This arrangement was doomed. No matter how patient nor how hard I tried to please her, nothing was right. I resolved to speed up the interview process for a companion caregiver who would live with my mother in her own home.

At first, I let my mother sit in on the interviews, hoping that if my mother liked the caregiver, the new arrangement might work better. I quickly realized this was not going to work. One applicant walked out after my mother accused her out of the blue of stealing her wallet.

I eventually settled on Maria, a woman in her midthirties who drove and appeared committed to making this work. She liked having the privacy of her own duplex above my mother's apartment. We agreed that either one of my nurses or I would relieve her for four days every three weeks. She seemed resilient and good natured enough to withstand my mother's rage. She worked by my side to bathe, dress, and serve as a companion to my mother over the next three weeks. Then the two of them went back to my mother's seaside apartment in New Jersey.

Maria tried to make the new arrangement work, but it was difficult. Before they left, I called the New Jersey police to tell them that there was an elderly female resident living at the Margate address who had Alzheimer's disease, and confirmed that the caregiver in the house was legitimate.

Still, a few days after my mother left, at 2:30
P
.
M
., the police called. My mother had tried to climb out the window and was screaming for help. On the other line was Maria. She apologized profusely, saying she had slipped out to the market while my mother slept and had locked the doors for safety. For an arthritic eighty-five-year-old woman, my mother's dexterity and physical strength confounded me.

I tried to reassure Maria that there was a settling-in period whenever an Alzheimer's patient was moved. I coached her on the stratagems I had used to try to manage similar behavior in Harvey. I suggested that she pull the plug on the phone before she left the house.

My mother refused to bathe or eat until she was so hungry she forgot to complain. Often, Maria was forced to retreat to the other room and wait until my mother's anger had calmed enough for her to venture back. My mother no longer lived in the present. She seemed most upset that her parents, dead for decades now, had still not arrived to pick her up. I felt guilty and upset for deluding myself that sending her back to her apartment might solve the problem.

Fearful that my mother might call the police or get into trouble when she was absent from the house, Maria started taking her whenever she went out. It was exhausting, even for someone young and strong. A ten-minute trip to the pharmacy often ended up taking two hours. On one such occasion, my mother started screaming for help in the middle of the store parking lot, shouting that she was being kidnapped.

A favorite outing to the Jersey boardwalk to watch the ocean turned dark when my mother screamed out to a passing patrol officer on a bike. Each time, the police were required to respond and report the incident even though it was easy to read the circumstances. I feared we were rapidly becoming a nuisance. After each new episode, we put new routines into place to try to address the issue. Instead of Maria going out to buy groceries or pick up prescriptions, she had them delivered. Outings were now limited to the small porch outside the kitchen area to take in the afternoon sun. Maria was getting claustrophobic, shut in the home all day with an elderly woman who often screamed. It felt like the phone rang incessantly. When I spoke with Maria, I could hear the frustration in her voice, and she sometimes dissolved into tears. I realized that Maria was likely in over her head, but I did not have the resources to immediately rectify the situation, so I focused mostly on trying to prop up her spirit.

A few weeks later, there was a knock at the front door. I opened it to find Maria in tears and my mother in the back-seat of the car. Maria helped me get my mother, who was shouting profanities, out of the car and around to the patio in the back of the house. My mother berated the young woman as I defended her. Then I raised my voice in a parenting tone: “Mother, stop it. Don't you dare insult Maria whom I hired to help you. It is you who have closed down all your options.”

Moving out of my mother's line of sight, I quickly debriefed Maria, though our constant and daily phone contact left me with no surprises. Apologetic but unwavering, she was at her breaking point and couldn't continue. She handed over the daily nursing book and all the receipts with the credit card I had arranged for her. Maria thanked me for not yelling at her. She didn't even want to wait for her final check and asked me to mail it. From her car, she rolled down her window to say, “I don't know how you do it. You're a saint.” She backed out of my driveway and drove away to reclaim her life. I brought my mother inside and shut the door behind her. My mother was home for good.

O
nce again, I had two Alzheimer's patients in my house. The dining room was still converted into a bedroom from the last time my mother was there.

The immediate issue was my mother's behavior. I could predict what would happen to my mother in a facility. Unlike Harvey, she fit the demographic, but she was midway into the disease and still fighting for control. Her meanness meant the nursing staff would limit their interaction. Personal hygiene would lapse; bruising or bedsores might be missed if I didn't take the time to undress her. Every time I resolved to test a facility, I got cold feet. Each time I bathed her, a wave of nausea swept over me for considering such a move.

I had long ago sold off the few remaining assets we had, including Harvey's wine collection. My mother's pension was not sufficient to cover the cost of a private institution. The only way I could stretch her limited resources as well as ours was to combine the twelve-hour nursing shift to handle both of them.

Olga, the only female nurse who might have been able to handle my mother's prickly personality, had been badly injured in an altercation at the nursing facility and forced to retire on disability. Dindo had already trained a hard-working young aide named Rocco to handle a shift. He was very conscientious and kind to my mother; she called him one of her best students.

So I made Harvey's all-male nursing team an offer. They would get a nice pay upgrade if they helped me manage the two of them under the same roof. I would still handle the twelve-hour night shift alone. They agreed to try out the new arrangement, and we settled into our new routine.

At the time, it seemed like the best, even only, option. After my experience with Harvey, I didn't trust the actuarial tables or the doctors' prognosis. I had been subsidizing my mother for years, never contradicting her sense of being self-sufficient. The metallic powder-blue Plymouth with a V-8 engine, which now sat in the driveway just to keep her happy, had been my gift. When she boasted to friends that she owned her home free and clear, it was I who had paid the mortgage when the balloon payment came due. I indulged her pride because she deserved it. But it also made her diatribes in dementia more painful. I was not counting on any inheritance as the only remaining child. I wanted to honor her by keeping her retirement free from scrimping to make ends meet.

Two Alzheimer's patients under one roof was claustrophobic. I felt like I was locked in a room with no escape. A good daughter, I had always taken on chores and responsibilities beyond my years, starting at age ten when my mother went back to school to get a master's degree. I was her financial and emotional anchor through every family crisis. Now all I wanted to do was escape her. There was nothing left to give her, and every time I tried, she rebuffed me. We prepared meals every night using her own recipes, but she left them untouched. She made unpleasant comments when she felt something wasn't done to her exacting standards. She still remembered to say thank you to everyone but me.

The focus of my frustration and anger was directed toward the
disease and not my mother. I couldn't help but wonder how other caregivers were managing. Were they forced to choose between the dreams for their kids and the needs of their parents? The advice that it was time to put a loved one away when exhaustion exceeded the guilt ignored the circumstances of their lives. What was the episode that triggered their breaking point when they just said, “NO MORE”?

Long before my mother moved in, I had become increasingly
frustrated with the way Alzheimer's disease was portrayed to the general public. I knew better than anyone that the thirty-second television ads showing a benign image of a little old lady with slowly fading, sepia-toned memories and a comforting daughter close by did not match the reality of living with Alzheimer's disease. Numerous nonprofits saw their mission as supporting Alzheimer's patients and families in the moment, but none could bring themselves to be honest about what lay ahead. In fairness, no one really knows.

My own experience made me adamant that there was nothing to lose in showing the general public graphic images of the disease, just as HIV and cancer advocates had once done. I wrestled with just how to do it. Unlike sufferers of HIV or breast cancer, Alzheimer's patients lived behind closed doors. At this point, I already knew Alzheimer's would win at home. Nothing I might do could change Harvey's fate. But I did start to believe that if people saw the real face of Alzheimer's, they might be alarmed and offended enough to band together politically.

Harvey had dramatically progressed into late-stage disease and an even more intense level of care. One night, I called the local poison control center with an emergency when Harvey ingested the mouthwash I used to clean his teeth. The simple act of brushing his teeth daily was now an arduous chore. He would bite the toothbrush or spit at me. Then one day, he forgot how to spit. There was no way to take him to a dentist unless fully sedated. Earlier, a visiting dentist at the nursing home advised me to extract all of Harvey's teeth. This was a not uncommon practice used with dementia patients to try to reduce tooth infections and avoid expensive procedures. I was repelled at the thought that Harvey wouldn't be able to chew his food and would need to eat baby food for nourishment, so I rebuffed the suggestion. Now I worried that he might be poisoned or get sick from the Listerine. Not only did the on-call nurse address my concerns, but she called back two hours later to check up on us. The callback was a comfort, but it also led me to realize how little support I felt from the Alzheimer's community. No Alzheimer's help center I turned to had ever called me to follow up, even after they switched to 24/7 call lines. I realized that when it came to Alzheimer's and taking care of patients, I needed to speak for myself.

Watching our financial portfolio dwindle made my anxiety
level soar. I realized that I needed to get back to work. I seized the occasional invitation to moderate industry panels for a speaking fee. I shared the stage with many of the same high-profile guests I had once interviewed as a television journalist. When people asked what I was doing now, I simply replied that my husband had taken ill and I had left my career to care for him. No one pressed further except to say they hoped things got better for us both. I always smiled and thanked them for the concern. I didn't offer details about Alzheimer's because I was still not sure what I wanted to say.

Then I finally had my chance. The Alzheimer's Association, an umbrella advocacy group whose board I had joined, asked me to testify as a patient advocate before the congressional Alzheimer's Caucus, headed up by Democratic representative Ed Markey from Massachusetts and Republican Chris Smith from New Jersey. At first, I hesitated. I knew they would be polite, but I wasn't sure my testimony would make a difference. Members of Congress and the journalists who covered these hearings were used to every group imaginable arguing that their condition was the most challenging, the most overlooked. I wanted to somehow break through.