Fading Memories, Lasting Love

When I recall my mother-in-law, Ruth Simons, I try to remember the special person she was before Alzheimer’s disease stole her away. Ruth was charming, smart, articulate, and kind. She raised four children. She loved dinner parties. She adored classical music. With my father-in-law, Gene, she attended dozens of Elderhostels around the world.

But in 1999, something changed. Ruth began using words incorrectly. One day, my sister-in-law, Vicki, noticed that Ruth couldn’t fasten her seatbelt. She seemed to have forgotten how. On trips, Gene said she seemed disoriented. Gene was a kind, patient man, but Ruth’s confusion irked him. He’d complain, “When are you going to get back to being your old self?”

Little cat feet
In retrospect, we should have suspected Alzheimer’s. Its top risk factor is age, and Ruth was 82. And it’s increasingly common. The Alzheimer’s Association says it afflicts 5 million Americans.
But Alzheimer’s develops slowly, says Deborah Halpern, of the National Family Caregiver Alliance, in Kensington, Maryland. Like the fog in Carl Sandberg’s poem, it “comes on little cat feet.” We had trouble distinguishing Ruth’s situation from normal age-related changes. But if you know what to look for, dementia is different from normal aging. Anyone can misplace their keys. People with dementia find them and have no idea what they are (see “Warning Signs of Alzheimer’s” on page TK).
We also should have suspected Alzheimer’s based on Ruth’s long history of high blood pressure, heart disease, and lack of exercise. Myth has it that Alzheimer’s strikes out of the blue, but in fact, it’s a close cousin to cardiovascular disease. In CV, arterial injury leads to cholesterol-rich plaque growth and reduced blood flow to either the heart, which leads to heart attack, or the brain, which leads to stroke. With Alzheimer’s, on the other hand, a different type of plaque forms in the brain (beta-amyloid plaques), and the brain cells get all tangled up. Although the biochemical mechanisms of Alzheimer’s and cardiovascular disease are different, Alzheimer’s prevention strategies can mimic those for warding off heart attack and stroke (see “Risk Factors and Prevention” on page TK).

Oh, my God
As Alzheimer’s develops, someone in the family starts wondering about the person and suggests medical testing. Others may think that’s alarmist, and rancor sometimes ensues. Around the time Ruth fumbled with her seat belt, my wife, Anne, who happens to be a doctor, added up her mother’s increasing forgetfulness, language problems, and lethargy, and quietly suggested the possibility of dementia. Her father dismissed it as ridiculous. He insisted that Ruth was simply fatigued, and would soon be her old self again. “Say Alzheimer’s,” explains Dolores Gallagher-Thompson, PhD, a professor in the department of psychiatry at Stanford who specializes in dementia caregiving, “and people think: memory loss. But inappropriate behavior—bizarre speech, buttons misbuttoned—is often the first sign.”
Anne e-mailed her three siblings. They didn’t know what to think. They decided to wait and see. If Gene was right, then confronting him would be energy wasted. If he was wrong, he’d realize it soon enough.
As Alzheimer’s progresses, it becomes obvious that something is amiss. For Anne and me, the oh-my-God moment occurred in 1999 at our son Jeff’s bar mitzvah. Ruth and Gene flew to San Francisco from Ohio. They loved the City by the Bay, but this time, Ruth was unusually disoriented. She also kept forgetting Jeff’s name. Now anyone can forget names, but how many grandmothers repeatedly forget a grandson’s name at his bar mitzvah? In one of our conversations, Ruth struggled to recall Jeff’s name, couldn’t, and finally said, “your son.”

From caregiver to martyr
A few months later, while driving, Ruth turned left—and crashed into an oncoming car. No one was hurt, but the incident marked a turning point for Gene. He had Ruth evaluated. She took cognitive function tests over a few months. The doctor said her mental abilities were declining—in a pattern consistent with Alzheimer’s. It took Gene several months to truly believe that Ruth would never again be her old self. But he immediately threw himself into being her primary caregiver. Over time, Ruth lost the ability to dress, shop, cook, clean, bathe, and cut up her food. Gene did all of them for her (and became an accomplished cook). “Most caregivers are women,” Gallagher-Thompson says, “wives, daughters, or daughters-in-law. But about one-third are men, husbands or sons. Caregiving doesn’t come as naturally to men, but in my experience, they rise to the occasion.” Gene certainly did.
Alzheimer’s has three stages: early/mild, middle/moderate, and late/severe. The boundaries are fuzzy, but each stage has hallmarks. In early disease, victims retain enough cognitive function to understand that they have The Big A. Most are horrified, then depressed. Over time, they must relinquish everything that defined them as competent adults: driving, dressing, bathing, money management, and ultimately, independent living. Meanwhile, caregivers must deal with victims’ shock and depression—and wrestle with their own feelings of loss while confiscating the car keys and checkbook. “Emotionally,” Gallagher-Thompson explains, “early Alzheimer’s is the hardest stage for everyone.”
Thanksgiving 2000 marked Ruth’s last visit to California. She could still talk, but extended conversations were beyond her. “Ruth,” I asked, “how does it feel to have Alzheimer’s?” She gazed adoringly at Gene. She struggled to find the words, then replied. “Not bad.” We all laughed. It was funny, but one look at my increasingly beleaguered father-in-law told a different tale.

For a man of 80, Gene was in good shape, but he had no idea how taxing caregiving would be. I did some research and found a study showing that compared with caregivers who had little support, those who joined a support group and took advantage of community social services were able to delay nursing home placement almost a year longer. We sent Gene this and other information. It screamed hire help, take time off, join a support group. But support groups made no sense to him. Hiring help was a waste of money. And he insisted that he didn’t need time off.
“Many caregivers believe it’s selfish to take time off,” Halpern says. “They become martyrs. But respite isn’t selfish. It’s absolutely necessary. Without it, caregivers become exhausted. Their immune systems suffer. They burn out and get sick. Caregivers must take care of themselves or they can’t take good care of the person they’re caring for. I urge caregivers to take two nights off a week, one for a support group, the other to see friends and have fun.”
We also encouraged Gene to give Ruth the medicinal herb, ginkgo, but he never did. He was skeptical of alternative therapies (for more natural ways to slow cognitive decline, see “Alternative Therapies for Alzheimer’s” on page TK).

As Ruth descended into moderate Alzheimer’s, my once-sociable, once-active mother-in-law slipped into silence and lethargy. “Personality changes are common,” says Peter Reed, senior director of programs for the Alzheimer’s Association in Chicago. “People may become less or more social. There’s no way to predict it.” Unlike many Alzheimer’s sufferers who become agitated and belligerent, Ruth was cooperative and did not resist relinquishing her car keys or other vestiges of her previous life. But she weighed more than Gene. He had a hard time pulling her out of bed in the morning, bathing her, dressing her, feeding her, cleaning her up after meals, shepherding her everywhere, undressing her, and putting her to bed at night. “Most people go into caregiving with no idea how hard it is to managing the person’s activities of daily living,” Gallagher-Thompson says.
We kept encouraging Gene to hire help, attend a support group, sign up for Meals on Wheels, and consult a social worker about community resources. He said he would when he had to, but he didn’t need that kind of help—yet. We all disagreed. Gene was exhibiting what Reed calls classic signs of caregiver stress: denial, depression, exhaustion, sleep problems, and loss of concentration. But he would not accept help. What could we do?

Help, finally
In 2001, Ruth lost bladder control and needed adult diapers. Gene hadn’t changed diapers in 50 years. Only this time, he wasn’t dealing with babies, but with an adult who weighed more than he did. Then Gene fell, broke a hip, and needed a replacement. Someone had to stay with Ruth. Finally, he hired home aides. After his surgery, he kept them on for a while, then placed Ruth in adult day care two days a week so he could shop, run errands, do his rehab exercises, and have a little time to himself.

Meanwhile, if Ruth fell and couldn’t get up, Gene couldn’t lift her. My wife said, “They’re one fall away from a major change.” Vicki quietly began investigating nursing homes. “The best time to shop for a nursing home is well before you need one,” Gallagher-Thompson says. “Usually, a crisis triggers placement. But when you’re in crisis, that’s not a good time to shop.”
In summer of 2002, Ruth became incontinent of stool. For Gene, this was the final straw. As selfless and devoted as he was, he couldn’t cope with that. He was 85. He was burned out. He started talking about nursing homes. “Caregiving follows a predictable pattern,” Gallagher-Thompson explains. “Caregivers begin with the best intentions, and usually manage well for a while. But over time, they burn out. Then some crisis happens, and the only alternative is a nursing home.”

Into the home
Vicki found a nursing home close to Gene’s condominium that had an Alzheimer’s unit. But nursing homes have a nasty reputation. “I was very apprehensive,” Vicki recalls. A recent report by the Government Accountability Office says the nation’s 16,400 nursing homes are poorly regulated. But Vicki was pleasantly surprised: “The home was wonderful—clean, good activities, decent food, no bad smells, and a caring staff.” Her experience is not uncommon. “There are good nursing homes,” Gallagher-Thompson says. “Past abuses triggered a real effort by the industry to clean up. Compared with 10 years ago, you hear less about horrible conditions.”
Ruth’s move into the home was surprisingly smooth. She didn’t seem to miss home. She was down to a few words. All she could do for herself was shuffle from her room to the day room with assistance. Gene was the only person she still recognized.
Gene visited her every day, usually at dinner. He fed her, sat with her, read to her, and often put her to bed. “If a caregiver can visit,” Reed explains, “it’s helpful. The caregiver continues to feel involved and can help the home’s staff.” Freed from the demands of full-time caregiving, Gene’s physical and mental health improved. He said what many former caregivers say: “I should have placed her six months sooner.”
After two and a half years in the nursing home, Ruth stopped eating. Gene tried to coax her, but to no avail. She died peacefully 10 days later in February 2005 at age 88. One of the minor blessings of her nursing home years was that Gene and the family had a long time to get used to living without her. Her death was sad, but not tragic. It was a relief.

Two years later, Gene suffered a stroke at 89 and died. As exhausting as caregiving was for him, he never regretted one moment of it. “It was more than an obligation,” Vicki says, “It was truly a labor of love. He was particularly thankful that Mom never seemed to suffer.”
I always liked my father-in-law. But my feelings deepened considerably during his years as a caregiver. His devotion, stamina, and love were truly inspiring. I wish he’d been more open to help and alternative therapies. But his heart was always in the right place. I hope I’m never called upon to do what he did. But if I am, I hope I can muster something approaching his selflessness and grace. Michael Castleman is a coauthor (with Matthew Naythons, MD, and Dolores Gallagher-Thompson, PhD) of There’s Still A Person In There: The Complete Guide to Treating and Coping with Alzheimer’s Disease.

Warning Signs of Alzheimer’s
1. Memory loss. It’s normal to forget names occasionally. People with Alzheimer’s forget more and more over time.
2. Difficulty performing familiar tasks. It’s normal to occasionally forget why you walked into a room. People with Alzheimer’s forget how to button shirts.
3. Problems with language. Everyone occasionally has trouble finding the right word. People with Alzheimer’s lose an increasing number of words and become hard to understand.
4. Disorientation. Anyone can feel disoriented in unfamiliar surroundings. People with Alzheimer’s become lost on familiar turf.
5. Socially inappropriate behavior. Anyone can make an occasional faux pas. People with Alzheimer’s stop bathing, or leave the house in their underwear.
6. Problems reasoning. Anyone can have trouble balancing a checkbook. People with Alzheimer’s forget what checks are for.
7. Seriously misplacing things. Anyone can misplace keys. People with Alzheimer’s do things like put them in the freezer.
8. Mood changes. Anyone can feel moody. People with Alzheimer’s may experience significant mood changes—from calm to rage—for no apparent reason.
9. Personality changes. Normal people change over time, but are still recognizably themselves. People with Alzheimer’s become different people.
10. Passivity. Anyone can zone out in front of the TV. People with Alzheimer’s often become very passive, not wanting to do things they always enjoyed.

Risk Factors and Prevention
Many people feel fatalistic about Alzheimer’s because the best-known risk factors—age, family history, and certain genetic markers—can’t be changed. Meanwhile, the best publicized way to reduce risk is to engage in mind-stimulating activities. “Mental stimulation is important,” says Maria Carrillo, PhD, director of medical and scientific relations for the Alzheimer’s Association. “But the research shows an important connection between brain health and heart health.”
It’s poorly publicized but true: Everything that raises risk for cardiovascular disease (heart disease and stroke) also raises risk of Alzheimer’s. And everything that reduces cardiovascular risk helps prevent Alzheimer’s, according to recent research.
Smoking. Dutch researchers followed 6,870 people over 55 for two years. Compared with nonsmokers, smokers had twice the risk of developing Alzheimer’s.
High cholesterol. Scandinavian researchers followed 1,449 people for 21 years. High cholesterol in midlife raised the risk for later Alzheimer’s diagnosis.
High blood pressure. In the Scandinavian study, high blood pressure during midlife more than doubled risk of Alzheimer’s as participants became elderly.
Obesity. In the Scandinavian study, obesity during midlife more than doubled risk of Alzheimer’s later.
Diabetes. Swedish researchers tested the cognitive function of 1,301 elderly people over a six-year period. Diabetes significantly increased risk of Alzheimer’s.
Animal fat. In the Scandinavian study, a diet high in saturated fat more than doubled risk of Alzheimer’s.
Exercise. In the Scandinavian study, physical activity twice a week or more significantly reduced Alzheimer’s risk.
Mediterranean diet. Based predominantly on fruits and vegetables, this diet contains much less saturated fat than most Americans eat. Columbia University researchers compared the diets of almost 2,000 people, some of whom had Alzheimer’s. Those who ate a Mediterranean diet were significantly less likely to develop the disease.
Dietary antioxidants. Dutch researchers followed 5,296 people over 55 for six years and found that high intake of vitamins C and E was associated with reduced risk of Alzheimer’s.
Antioxidant supplements. Antioxidants need not come only from food. Johns Hopkins researchers followed 4,740 elderly Utah residents for up to five years. Use of vitamin C and E supplements reduced Alzheimer’s risk.
Alcohol. Columbia University researchers followed 980 people over 65 for four years. Consumption of up to three glasses of wine a day reduced risk of Alzheimer’s.
Alternative Therapies for Alzheimer’sNo known treatment reverses Alzheimer’s disease. However, many studies show that alternative therapies work as well as pharmaceuticals to slow cognitive decline and treat the agitation and aggression many sufferers experience.
Ginkgo. Ten years ago, a highly publicized study showed that ginkgo (120 mg/day) significantly slows the mental decline of people with Alzheimer’s. That finding has been confirmed by many other studies. “In one,” says Mark Blumenthal, executive director of the American Botanical Council in Austin, Texas, the nation’s premier herb-education organization, “ginkgo slowed cognitive decline as well as a standard pharmaceutical treatment.”
Huperzine-A. This extract from a Chinese moss has a ginkgo-like affect on the brain. Chinese studies suggest that it slows cognitive decline in people with Alzheimer’s.
Coenzyme Q10. Vitamin-like coenzyme Q10 is a potent antioxidant. Pilot studies suggest it may help treat Alzheimer’s.
Aromatherapy. British researchers infused an Alzheimer’s hospital unit with lavender oil or a placebo. When exposed to lavender, agitated Alzheimer’s sufferers became significantly calmer. Another British group obtained similar results using lemon balm oil.
Massage. Studies show that massage soothes agitated Alzheimer’s sufferers.
Acupuncture. Chinese researchers treated Alzheimer’s sufferers with acupuncture (100 sessions), and their cognitive abilities improved significantly.
Omega-3 fatty acids. Tufts researchers followed 899 cognitively normal people, average age 76, for nine years. Those who consumed the most omega-3s from fatty fish and supplements had 39 percent less risk of Alzheimer’s. In people with early Alzheimer’s, one study suggests that omega-3 supplements (3 grams/day) produce some cognitive benefits.

Every Caregiver Should…
…Wear a MedicAlert bracelet declaring that you’re a caregiver. “If an accident incapacitates you,” says Deborah Halpern, of the National Family Caregiver Alliance, in Kensington, Maryland, “your loved one could be left alone for days. A MedicAlert bracelet could mean the difference between assistance and abandonment.”

Resources:

Alzheimer’s Association
225 N. Michigan Ave., Chicago, IL 60601-7633, www.alz.org. The premier organization that deals with the disease. Chapters nationwide sponsor support groups and make referrals to local resources.Familycaregiving101.org
This joint project of the National Family Caregivers Association and the National Alliance for Caregiving answers many common questions about caregiving.

National Family Caregivers Association
10400 Connecticut Ave., Ste. 500, Kensington, MD 208795-3944, www.thefamilycaregiver.org. Information, support, and referrals for caregivers

National Alliance for Caregiving
4720 Montgomery Ln., 5th floor, Bethesda, MD 20814, www.caregiving.org. Information, support, and referrals for caregivers

Family Caregiver Alliance
180 Montgomery St., Ste. 1100, San Francisco, CA 94104, www.caregiver.org. Information, support, and referrals for caregivers