Dementia’s Gift: Facing Cancer Without the Fear

•March 18, 2018 • Leave a Comment

I’m driving my mother to her second week of radiation on a glorious spring day. Pale green leaf-lace froths on the trees, a verdant scribble working its way up the foothills of Mt. Greylock. Spring is an irrepressible fact in New England, not a cliché. And the weather is our favorite subject now that Mom has moderate Alzheimer’s.Today, three horses graze in a newly lush pasture.“Look!” she says.“Yes,” I agree, adding: “Sometimes I still want to take riding lessons.”“Me too!” she says, delighted.“Let’s do it.”We bask for a minute in the shared fantasy. Any coherent conversation is a gift, the verbal back-and-forth I once took for granted. How cross I used to get with her before the diagnosis, how frustrated with her anxiety, her chronic lateness, the myriad vexing habits I can’t even remember now. Why did it take first one illness, then another, for me to relax in her company?Sunlight glimmers on the lake beside the hospital. Vast walls of windows offer patients a glimpse of water. One frail man sits in his wheelchair outside the double doors, parked in the sun. He is so thin he is nearly translucent and I make myself look him straight in the eye and say “Beautiful day,” as if he weren’t dying.Radiation is tucked away in the basement. When the young nurse calls Mom for the appointment, she seems confused, looks back at me searchingly, but she goes with the woman while I sit on a couch with her caregiver. She needs 24/7 care in her home now, a rotating team of four, and Lisa’s on the day shift today. A recessed fish tank bubbles in the wall beside us; I wonder if the hospital design team has implemented recent studies that prove aquariums reduce stress and blood pressure. I try to watch the lazy angelfish drifting through coral décor but end up lost in my phone. When my mom returns, she’s not distressed. In fact, she’s smiling.She’s in and out for 20-minute sessions, Monday through Friday for six weeks. What we dreaded seems doable now. The nurses are so kind; they care for Mom gently and graciously, without a touch of impatience. She’s doing well, says the radiologist. Better than expected, says the oncologist. Apparently squamous cell carcinoma is the best kind of cancer to get if you have to get anal cancer. It hasn’t spread and has a high cure rate and might just be a bump in the road, although the road we’re on is headed toward the desert of late-stage dementia.At first I was shocked and furious about my mother’s diagnosis, believing that Alzheimer’s gave a person a free pass on other diseases. But aging is a high risk factor for cancer and Mom is nearly 71; if you do the math, it’s not uncommon to have dementia along with other illnesses that prevail among the elderly.One of my brothers called her cancer “cruel and unusual punishment,” and we all braced for the suffering she’d endure. But anguish hasn’t come yet and maybe it never will; maybe the mercy of dementia is that it places Mom purely in the present moment, immune to fear and dread, to the psychological distress that often accompanies cancer treatment.Don’t get me wrong, I’m not finding a silver lining. I never would have asked for this, would take it back if I could. My optimist father used to say that the Chinese character for “crisis” contained the word “opportunity,” but I’ve since learned that he was wrong. His entrepreneur’s mantra was a misinterpretation of language, a false New Age twist on Far Eastern wisdom, although it did offer me solace in times of despair.And I can’t deny that something has changed for me, some guard let down, a window opened that allows me to love my mother like a cloudless sky.Driving home, I play oldies radio and we sing along to “Here Comes the Sun.” Mom knows all the lyrics, belts them out in her sweet alto because Alzheimer’s doesn’t affect music memory, at least at this stage. Little darling, it’s been a long cold lonely winter. I wonder if it’s John or Paul on lead vocals. Later I look it up and learn it’s actually George who wrote and recorded the song, a fact Mom once would have known without Google, but all she knows now is music and spring wind and her oldest child in the driver’s seat singing it’s all right. Crooning the chorus, she is free of self-consciousness. She has cancer but she’s in a good mood.My siblings and I had agonized about how to treat her carcinoma when she couldn’t understand what was happening to her own body. She’d been diagnosed with Alzheimer’s at age 68 and could no longer make a cup of tea, let alone any medical decisions. I’d consulted with her neurologist, fearing the aggressive chemo-radiotherapy might speed her cognitive decline (it probably wouldn’t, he told me). Because of the high cure rate and the excruciating consequences of letting her tumor grow, we went ahead with the recommended treatment. My brother was her health care proxy and made the decision we all believed she would have made for herself.Before I leave, I embrace Mom in the kitchen. Every chance I get I hold her hand. I remember how I used to half-hug her with one arm, keeping my body stiff and apart, just the way my preteen daughter now deigns to hug me. I was protecting myself from the pressure of her love, a force that seemed to obliterate my selfhood. Now I can’t get enough.“My baby!” she says, pulling me closer.“Your big baby,” I laugh. “Even my own babies are big now.”“Well, that’s O.K.,” she answers. Sometimes she forgets I have children and what their names are, but she knows me, she’s happy to see me. Who else in my life has ever been so happy to see me walk through the door?Last year the memory specialist tried to comfort us when we told him the Alzheimer’s was progressing rapidly. “When cognition falls away,” he said, “what remains is the ability to love and be loved.”Diana Whitney is a yoga teacher in Vermont and the poetry critic for The San Francisco Chronicle. She is finishing a memoir.


Elder Abuse: Sometimes It’s Self-Inflicted

•March 12, 2018 • Leave a Comment

Paula SpanTHE NEW OLD AGE MARCH 2, 2018The man was living alone with his two dogs, in a remote area outside San Antonio, when someone called the Texas state hotline to report that a supposed friend was financially exploiting him. So the state adult protective services agency sent a caseworker to the man’s home.She found an 86-year-old Vietnam veteran in a dirty, cluttered house full of empty liquor bottles. His legs swollen by chronic cellulitis, he could barely walk, so he used a scooter.He missed doctor’s appointments. He had the medications he needed for cellulitis and diabetes, but didn’t take them. Though he had a functioning toilet, he preferred to urinate into plastic gallon jugs. He didn’t clean up after his dogs. He wasn’t eating well.This behavior pointed to an underrecognized problem called self-neglect. It accounts for more calls to adult protective services agencies nationwide than any other form of elder abuse.Yet efforts to identify and help older people who neglect themselves often collide with Americans’ emphasis on self-determination.“If someone has decision-making capacity, do they have the right to live in squalor?” asked Dr. XinQi Dong, a researcher at the Rush Institute for Healthy Aging in Chicago. “As a society, we want to respect autonomy and independence.”In the Texan’s case, “he wasn’t happy that A.P.S. was there, and he denied that he was being exploited,” said Raymond Kirsch, an agency investigator who became involved. “He also denied that he had a drinking problem.”Grudgingly, he allowed the agency to set up a thorough housecleaning, to start sending a home care aide and to arrange for Meals on Wheels.But on a follow-up visit a month later, the caseworker found her client markedly deteriorated. His swollen legs now oozed. He’d become personally filthy and was ranting incoherently. She returned with an ambulance and a doctor who determined that the client lacked the capacity to make medical decisions.Off he went to a San Antonio hospital, under an emergency court order. The caseworker locked up the house and kenneled the dogs.We hear much more about other kinds of elder abuse and exploitation. Perhaps it’s easier to respond when someone is being victimized by others than when he is harming himself.“Family members get fed up and don’t want to get involved,” said Courtney Reynolds, a research analyst at the Benjamin Rose Institute on Aging in Cleveland. “They attribute it to a character issue, like stubbornness, instead of a decline in the person’s ability to manage.”Self-neglect refers to someone whose behavior threatens her health and safety. In ongoing studies in Chicago, Dr. Dong and his colleagues look for factors like hoarding (of objects or animals), poor personal hygiene and unsanitary conditions.“People can have sores or lice or pests in the house. They may have medical issues but not be taking medications as prescribed,” added Ms. Reynolds, who has seen self-neglect as a social worker. “There could be piles of garbage, or food stored in a refrigerator that’s not working.”That’s why self-neglect may go undetected at medical appointments. “If someone comes into my office wearing a clean shirt and pants, I wouldn’t know they’re hoarding at home,” said Dr. Dong, a geriatrician. “You have to observe their living environment.”In the Chicago studies, involving more than 4,600 South Side residents over age 65, researchers who conducted in-home interviews found self-neglect unnervingly common.It occurred in 9 to 10 percent of men and 7.5 to 8.5 percent of women, depending on age. Because some residents refused access to their homes, “it wouldn’t surprise me if the prevalence were higher,” Dr. Dong said.Neglect was more common among those with poor health and cognitive impairment. African-Americans and those with lower income and education had far higher rates of self-neglect. (In a separate Chicago study, so did Chinese-Americans.)Mental illness and social isolation are demonstrated risk factors, but among the many unanswered questions, Dr. Dong said, is cause and effect. Do depressed people neglect their care, or do people who self-neglect then become depressed?Whatever the underlying causes, “it’s incredibly dangerous,” Dr. Dong said.People who neglect themselves have higher rates of illness and death, of emergency room visits and hospitalization. They’re more apt to suffer other forms of elder abuse as well.As the syndrome draws greater attention — the American Society on Aging’s national conference in San Francisco this month will address self-neglect — other questions arise.Though state adult protective services agencies take on such cases, laws about reporting neglect and abuse vary widely.“In most states, there’s a laundry list of people who have to report, typically doctors and social workers,” said Andrew Capehart, former assistant director of the National Adult Protective Services Association. Several states have added financial services employees and clergy to the list.In Texas, everybody is a mandated reporter — any relative, neighbor or even passer-by — while New York has no reporting requirements. A few states don’t include self-neglect as a form of abuse that agencies will investigate.Even when self-neglect gets reported, state agencies are “often overworked, understaffed and underfunded,” Dr. Dong said. Moreover, with limited research and a dearth of strategies and treatments shown to help, “we really don’t know how to deal with these cases.”Still, reporting suspected self-neglect to an agency is the starting point.Families may hesitate to invite government involvement, “but that idea of us kicking in doors and hauling people out to nursing homes is so wrong,” Mr. Kirsch said. “Our goal is to keep people in their homes as long as humanly possible — but safely.”Sometimes, these stories have reasonably happy endings. Dr. Dong worked for months with a depressed patient in her late 60s who suffered from chronic pain from arthritis and diabetic nerve damage but wasn’t taking her medication.A home visit revealed that she was hoarding, and tripping over cords plugged into overloaded electrical outlets.Her children had been selling the OxyContin Dr. Dong had prescribed, he eventually learned, but she was afraid to tell anyone. Over time, he changed her drug regimen, sent physical therapists and visiting nurses to her home, and helped her lose weight.Her home remains cluttered with bags, boxes and newspapers. But as she became more mobile, able to join activities at her church and community center, she grew less isolated and her mood improved. “This needs to be a systemwide response,” Dr. Dong said. “It took a lot to mobilize all this.”In San Antonio, Mr. Kirsch also has success stories — and some with more disturbing outcomes.The 86-year-old vet, for example, rebounded during a month in a hospital nursing home. “Because he was receiving three square meals a day and wasn’t drinking, and was taking his meds, he did unbelievably well,” Mr. Kirsch said.So well that at his next court appearance, a county judge and nursing home physicians agreed the man had regained legal capacity. He could make his own decisions — and his decision was to go home to his dogs.Mr. Kirsch, on hand for the homecoming, saw that the man’s friend had restocked the house with alcohol. And once back in his house, the client announced that he wanted nothing further to do with offers of help from adult protective services.“My heart sank,” Mr. Kirsch said. “You know it’s not going to get better.” But there was nothing more the agency could do.“We had to close his case and bow out.”

When Alzheimer’s Makes Room For Love

•March 6, 2018 • Leave a Comment

I am scratching my mother’s head. Her hair is quite thin now and I no longer bother to make an appointment in the nursing home’s “salon” for a cut. It is just another trauma to her, as is taking a shower. When the aides give her a shower I can hear her screaming all the way down the hall, shrieking like a feral cat.I am scratching the head of the woman who more than once told me she would cut off my arm and beat me with the bloody stump when, as a child, I angered her about something. Now she leans back into my hand like the cat she has become, almost purring, after the horror of the shower and the indignity of being dressed and put into her wheelchair for the day. Most days she just gets a sponge bath which elicits protests, often biting, and always my mother finding the most tender spot on a caregiver’s upper arm and pinching it hard.At lunch I pull apart small pieces of a peanut butter sandwich and my mother lets me feed it to her. With her terrible teeth, which used to be gorgeous and white, she rolls the tiny morsel of food around in her mouth until it seems to be gone. Sometimes when I offer another bite she shakes her head. Sometimes she opens her mouth. Then we have cake. She likes cake.Later I stroke the inside of her arm, the smooth, soft part that seems to be connected directly to the brain. She closes her eyes and I sit in a chair next to her wheelchair whose wheels I have locked down so she cannot roll away, and I stroke her arm. Once upon a time when things were good, which they sometimes were, I would sit down next to my mother and hold out my arm, inside part up, and she would almost unconsciously stroke it. She did this when I had my first panic attack at 15. Now, when I am anxious on an airplane or cannot sleep, my husband tickles me gently there and my breathing slows, my heart quiets.I am stroking the arm of the woman who yelled at me in the streets of Boston that no one should have a daughter as awful as me. Rubbing and scratching the head of the woman who looked at one of my short stories and said, matter-of-factly, “You might have to admit that this is as good as you will ever get.” I was 22.Every four months I fly a thousand miles to visit my mother in the nursing home. I sit with her for hours each day for nearly a week and then I fly back home. These visits are tortuous but necessary. Because in the past dozen years my love for her has escalated with each visit, as the woman she once was has de-escalated.At each de-escalation, my family and I have prepared for the end. But her body, tiny and frail as it is, is stronger than any of us.I should have known that ultimately her strength would be both a blessing and a curse. This final de-escalation, this profound helplessness, this agony of watching the endless end, is what helps me finally really, unconditionally, love her.I sit for hours with my mother, mostly in silence, in a cocoon amid the noise of the television, nurses, aides, elevator; the hustling and bustling. It takes a half-hour to get all the residents to the dining room, a good hour for them to eat. That takes up part of the time I visit. I am glad of it. I tell her I love her several times a day. She doesn’t really look at me. She has no idea who I am and hasn’t since the illness and trauma that made the move from the lockdown Alzheimer’s unit at her assisted care facility to this nursing home necessary. This is not just a nursing home, it is the homestretch. It’s an endless loop of instant replay.I sit with the woman who told me that if I thought she wasn’t a good mother she would kill herself. The woman who threatened her own death so many many times, but when diagnosed with a long, tortuous death gave into the disease with a weary shrug, as though she had no choice.A dozen years ago had I been told I would be scratching the head of, tickling the arm of, sitting with, holding and loving my mother like this, I would have laughed. I avoided contact with her then as much as I could. I refused to see her deterioration, assumed it was the alcohol, the bipolar disorder, the sheer self-absorption she threw across her shoulders like a shawl that was responsible for incoherent late night calls, a refrigerator without food, her refusal to leave the house for fear she would get lost. I didn’t want to know. I didn’t want to imagine. Even when I knew, I didn’t want to know.After her shower when I sat reading in her room, she slept for the entire rest of the day, refusing to open her eyes even when put in her wheelchair, even when wheeled to lunch. She drank her Ensure like a blind woman. And then she slept. The pain and horror of the shower had worn her out. But she felt my hands on her. In her hair, on the tender part of her arm.I sat with a woman who nearly destroyed me. Who told her therapist for 30 years that her children were essentially evil and patently ungrateful.On the last day of my most recent visit, I tell my mother, “I have to leave now, but I will see you soon.” I talk to her as I do my cat, as though she understands. She opens her eyes and there is a sudden look of panic in them and she says: “Please don’t.”I am so stunned by her words, by words at all, that I tell her I will stay awhile longer and I do, sitting silently beside her. I hold her hand. She grips mine hard. I sit for another half-hour and then I lean in and kiss her forehead and I tell her, as I have countless dozen times before, “I love you, Mom.” And this time, this time, the woman who hasn’t spoken a sentence that makes any sense in almost two years, looks me straight in the eye and says: “I love you, too.”Lisa Solod is a writer and editor of the essay collection “Desire: Women Write About Wanting.”

The Death of the Doctor’s Dog

•February 11, 2018 • Leave a Comment

Silver and Lavender | Lambda Legal

•February 10, 2018 • Leave a Comment

Silver and Lavender | Lambda Legal

Nursing homes sedate residents with dementia by misusing antipsychotic drugs, report finds

•February 6, 2018 • Leave a Comment

U.S. Pays Billions for ‘Assisted Living,’ but What Does It Get?

•February 3, 2018 • Leave a Comment

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