In life-or-death legal dispute, modern medical ethics, Jewish law and civil law clash
***This story has been updated (Sept. 11, 12 p.m.)
As David Stern, a 61-year-old Orthodox Jew suffering from a rare neurodegenerative disease, lies conscious and hooked up to a respirator at Providence Tarzana Medical Center, the hospital and lawyers for two of Stern’s children are battling to determine whether the hospital should remove Stern from life support — as administrators say they are obligated to do — or perform a life-saving tracheostomy, as Stern’s family demands.
The dispute highlights a conflict at the intersection of modern medical ethics, Jewish medical ethics and civil law as it pertains to the validity of a living will and the extent to which “quality of life” measures should impact whether a life-saving procedure is appropriate.
In 2011, two years after he was diagnosed with cortical basal ganglionic degeneration (or CBGD, an incurable and ultimately fatal disease), Stern signed an advance medical directive. The directive names Shirit Gold, one of his two daughters, as his agent in medical emergencies where Stern is unable to make his own health decisions, such as this one. But it also stipulated that “life-sustaining procedures” that would only “artificially prolong” his life when he’s suffering from an “incurable and irreversible condition” should not be pursued.
Gold and her brother, Rayi Stern, argue that their father, who became Orthodox in 2003, never would have knowingly signed an end-of-life document that would violate Jewish law. The directive he signed allows for an autopsy, which is forbidden under Jewish law in most cases, and for organ donation, also forbidden in most cases (the directive did not account for the few instances in which an autopsy or organ donation would be permitted under Jewish law).
The family asserts he could not have understood the contents of what he was signing, and both Rayi Stern and Gold said their father was already two years into his neurodegenerative diagnosis, which has resulted in dementia and extreme loss of motor function, when he signed the directive. “I am 100 percent certain” he didn’t know, Rayi said. “He lived his life as a Jew. He wouldn’t want to end it in any other way.”
Swinging with The 5th Dementia
Twice a week, four older men get together to make music. There may be nothing unusual about that, but aging has not been kind to them: To varying degrees, they’ve been affected by dementia or Parkinson’s disease.
Nevertheless, when they get together and play standards from the American songbook — from “You Are My Sunshine” to “Fly Me to the Moon” — they can’t stop smiling.
Gene Sterling, a skilled drummer, leads the quartet. When he plays, there’s hardly any sign of his usual tremor. “Let’s do it bossa nova style,” he calls out before laying out a tempo.
Paul Livadary, on piano, follows the beat, but Irwin Rosenstein, on electric keyboard, seems lost for the moment, and Sam Mayo, on harmonica, sways to a tempo all his own. When the song is over, Sterling jokingly suggests that for their next piece, they all play different songs — at the same time.
“Let’s see how that sounds,” he says.
Livadary offers the reminder that “in this group, there aren’t any wrong notes”; Sterling laughs and nods.
Welcome to The 5th Dementia, a musical group with a name so self-mocking, it clearly doesn’t need to follow normal rules of rhythm and tempo. It was founded this past summer, along with parent organization MusicMendsMinds (motto: “restoring the rhythm of life”), by Carol Port Rosenstein and husband Irwin, the group’s aforementioned electric keyboardist, who is a 78-year-old retired attorney with Parkinson’s and early-stage dementia.
The inspiration for creating The 5th Dementia (a play on the name of the 1960s band The 5th Dimension) occurred when Carol Rosenstein was participating in TimeOut@UCLA, a UCLA program designed to give respite to caregivers. She was taking a needed break, and her husband was at OPICA (Optimistic People in a Caring Atmosphere), the adult day-care center associated with TimeOut@UCLA, where there happened to be a piano. That’s when Irwin began picking out tunes he remembered from his college days.
The first time he played, he didn’t get much of a reaction from the others; he thought his piano-playing had been a failure. But the next time Irwin gave it a go, others at the day-care center circled him and joined in by singing, including UCLA student volunteers who were paired with the seniors. When he came home afterward, Carol remembers, he was animated and happy.
“At OPICA, they gave me a job,” Irwin said. “They asked me to be the music man.”
Carol noticed that when her husband played music, he seemed to change in positive ways. He was more focused, more alive.
“At night, when Irwin’s medication dose was low, playing piano would change his mood,” she said. This led her to ask Dr. Jeff Bronstein, a UCLA neurologist, if it was possible that music had “pushed despair aside” in Irwin’s brain.
“Dr. Bronstein told me that it was not only possible, it was probable.”
Apparently, the parts of Irwin’s brain that contain musical memory and skills have not been drastically affected by his ailments. And he’s not alone: MusicMendsMinds.org draws on scientific studies to explain that rhythmic responses don’t require cognitive processing and that a person’s ability to engage in music can remain intact despite dementia.
Dr. Gary Small, director of UCLA’s Longevity Center, told the Journal that “music has a powerful effect on the brain.” Not only can playing music improve dementia symptoms, he said, just listening to music can have a positive effect on those with cognitive impairment.
Originally from South Africa, Carol is a dynamic 69-year-old redhead who met Irwin 30 years ago by way of the Jewish Journal personals. They were later married at University Synagogue in Brentwood. She told the Journal she’s a retired chiropractor who has been a “pioneer and educator in the field of holistic mind/body medicine.” Speculating that others like her husband might benefit from playing music, she mentioned the experience to her meditation group, InsightLA.
That’s where Sterling, 68, with a tremor in his left arm, heard about it and asked about playing music with Irwin. The meditation teacher connected Carol with Livadary, 78, a piano-playing former attorney with short-term memory loss. And Mayo, 83, a retired Pierce College history professor, added his harmonica to the group, thanks to a contact at UCLA’s dementia-treatment center.
The 5th Dementia faced one immediate challenge when they learned that Mayo’s harmonica was appropriate only for songs played in the key of C or G. The others in the group shrugged that off as a minor issue, though — they decided all their songs would be in those keys.
“Playing music with the others is the happiest time of the week for Irwin,” Carol said. “And I know it’s true for the others, as well. Each one of these men has had a thread of depression, and playing music has improved that.”
The men meet twice a week. On Mondays, they get together in the chapel of Brentwood Presbyterian Church, and on Wednesdays they jam at Windward School in Mar Vista, both of which have provided space for group.
Recent rehearsals have been focused on preparing holiday songs they’ll play at their first public concert, Dec. 19 at Brentwood Presbyterian. At the end of a run-through of “Rudolph, the Red-Nosed Reindeer,” Livadary, on the piano, added a flourish, drawing applause and thumbs-up signs from wives and caregivers, as well as from several young music students at Windward who play with the older men.
“This has been a godsend for these men,” Carol said. “They’ve developed enormous camaraderie. It’s become a new family for them. It’s not just therapeutic, it’s life-saving.”
She said she’s trying to find more musical seniors with Parkinson’s or early-stage dementia.
“There’s no reason why we can’t have many groups like this throughout L.A.,” she said. “Ultimately, we’re hoping to change how mild dementia is handled. In the past, once it sets in, even in the early stages, patients were already waiting to die. But that does not have to be. When these men play music, they feel human. They feel connected to one another.
“I’d like the word to go out to all early-dementia patients who can play music — they don’t have to be skilled musicians. Come here and join us, see if it changes your life just as it’s changed the lives of these men. Since Irwin started playing music again — after not doing it for decades — it’s given me back a part of my husband.”
The emotional landmines of family caregiving
Most families squabble. After a short cooling-off period, relatives tend to resolve spats and go on with their individual lives. But there are situations that make it difficult to restore harmony. For example, when an elderly loved one breaks a hip, suffers from dementia, a stroke or other disabling illness, spouses and adult children can become unglued. The frailty and dependence of a loved one often ignites emotional landmines, stirs up old family issues and uncovers personality traits best left buried.
A common situation goes like this: Sis worries that increasing forgetfulness threatens her mother’s safety. Her brother, on the other hand, argues that a few Post-It note reminders placed around mom’s home will remedy any “senior moments” she may have.
Sis replies, “You haven’t seen the burnt pots and pans left unattended on the stove.”
He comes back with “You are overreacting.”
Both want the best for their mother, but their competitiveness gets in the way of their ability to execute a plan. Each one is trying to prove that they are the smartest, most reasonable and the supreme problem-solver. Sibling rivalry never dies.
The siblings’ time would be better spent asking their mother what she prefers. Does mom want to remain in her home in the face of growing difficulties? Most seniors do. An assessment by a professional geriatric care manager (who is not a relative) would lay the groundwork for a plan to keep mom safe in her own home or, if that’s not wise, help the family find a more suitable living arrangement. For an explanation of what a geriatric care manager does and the location of one near you, visit www.caremanager.org.
The Golden-Haired Child
A painful situation for the primary caregiver occurs when another close relative does little or nothing to help, but they are adored and praised by the senior anyway. This frequently triggers resentment in the mentally and physically exhausted primary caregiver.
Keeping uninvolved relatives in the loop about medical conditions, treatments and finances increases the likelihood of their involvement. At the very least, it prevents later complaints that “nobody told me” or “I’d have never agreed to that had I’d known.”
It’s infuriating when others don’t do their share, but ultimately you can’t force people to do anything they don’t want to do. In the long run, you are better off not spending time stewing, a practice that results in more anger, bitterness and family feuds.
Before throwing in the towel, get together a family conference where the topic for discussion is “sharing the caring.” Generally, people are more willing to participate when they can contribute in a way that’s comfortable for them. Not everyone is willing or able to do hands-on care. Some relatives might have the know-how to help with figuring out and managing health benefits or home repairs or be willing to accompany the elder to doctor appointments.
The Scrooge is the family member who skimps on or neglects care. I recall a daughter who petitioned the court and was granted the conservatorship of her severely demented mother. The siblings welcomed the newfound kindness of their previously self-centered sister. Then the daughter moved their mother to an unlicensed, below-standard “cheap” facility far away from other family members. Soon, she began to mishandle her mother’s finances.
Most Scrooges simply want to preserve their inheritance or “get it early.”
If the older woman (when she was still well) had executed a living will or designated an ethical person to be her durable power of attorney for health care and for financial decisions, the Scrooge may never have been able to take over her mother’s care for her own gain.
These documents can be downloaded and are explained online at www.caringinfo.org.
The Long-Distance Denier
Some relatives are well-meaning, but distance is an obstacle. In this group there are also a large number of deniers who insist that nothing is wrong with mom or pop. Almost as bad are the bossy long-distance relatives who issue inappropriate and unsolicited “advice.”
Two solutions come to mind. First, discover what the distant person is willing to do from their own home. For example, research medications, health conditions, locate resources online, or provide emotional support via telephone or even financial support. Second, invite a denier to eldersit so the caregiver can take a break. A few days of duty may open their eyes to the “true picture.”
The Sandwiched Caregiver
Some caregivers are squeezed between caring for an elderly parent and parenting a teenager. Every hour spent on eldercare represents an hour unavailable for children. The bane of the sandwiched caregiver is guilt. No matter how much they have done, they always feel they could have done more. Even worse is the guilt experienced when their frustration and exhaustion result in angry words directed at their spouse, teenager or even the older family member.
One solution is to include the entire family in eldercare. For instance, children usually love assisting with grandpa’s exercise. They can count the repetitions and cheer grandpa on. Teenage girls may get a kick out of doing grandma’s nails. Such activities lighten the caregiving load and help young people develop compassion.
Joining a support group is an ideal way to cope. To find a support group near you, start with the Alzheimer’s Association at (800) 272-3900 or www.alz.org.
The overburdened are easily identified because the people they are caring for look better than they do. Overburdened caregivers are more inclined to have depressive illness, flare-ups of their own medical conditions and a higher mortality rate than those who are not caregivers.
The good news is that caregivers who choose their battles wisely, recognize that eldercare does not have to be perfect, and tend to their own health needs are able to provide better and longer care of their loved ones. While eldercare is often a thankless job, many caregivers report tremendous satisfaction when they reflect on the care they provided during the last years or months of their loved one’s life.
The Super Caregiver
The classic “Super Caregiver” is an adult child or spouse who refuses offers of help, saying, “No one can do it better than I can.”
Films: Dementia ordeal inspires comic tale of ‘The Savages’
Tamara Jenkins knows firsthand what an overwhelming task it is to care for a parent suffering from dementia. While she was in her mid-30s, she had to help care for both her father and grandmother during their final days in a nursing home.
She also knows that no matter how grave a situation might be, there are always sparks of humor surrounding it. So it’s no surprise that her new film, “The Savages,” addresses that very subject and does so with a healthy dose of comic perspective.
“I think it’s a natural sensibility of mine,” the writer-director said. “And I do think that on the underside of tragedy there is this human farce there at the same time. People are pushed to such extremes, and since they’re sort of doggy paddling through the situation, they often don’t know how to behave. I think that sometimes the behavior is unknowingly kinetic because they’re so frayed.”
“The Savages” tells the story of middle-aged siblings, Wendy and Jon Savage, who are suddenly forced to care for their estranged father, Lenny, who is left homeless after his girlfriend of 20 years dies. To compound matters, Lenny is sinking further into dementia and can no longer care for himself, leaving them in charge of finding a suitable rest home where he can be properly looked after. Once they do, Wendy handles the chore of taking her father cross-country from New York to Arizona.
Although the situation mirrors much of her own experiences, Jenkins points out this is not an autobiographical story.
“My experience was not exactly like what Jon and Wendy go through,” Jenkins said. “I had three other siblings — I’m not from Buffalo, and I never went to Sun City [the Arizona rest home]. I did fly my father across country, not unlike the movie, and that became a central theme because I didn’t realize the gravity of the task when I said, ‘OK, we’ll take dad across the country.’ And it wasn’t until I did it that it became clear to me that I really wasn’t equipped to handle the intensity of the task, that I was taking care of this person that needed help on such a level that I didn’t understand. So thematically that became a big part of the movie.”
The catalyst for Jenkins writing her script for “The Savages” was what she saw happening around her several years after her own ordeal.
“What helped bring it to the surface was suddenly my friends started going through this thing that for me happened in isolation, and it then became very relevant,” Jenkins revealed.
Center’s Studies Aid Care for Frail Elderly
Rose Sino sits in her wheelchair as lunch is placed before her. Her son offers her a forkful of cheese blintz, which Sino quickly chews before accepting another bite.
While this scene might appear routine, its significance is not lost on her son, David Swartz, or her caregivers at the Jewish Home for the Aging of Greater Los Angeles (JHA). Sino, 88, is a resident of JHA’s Goldenberg-Ziman Special Care Center, a facility that serves elderly residents with dementia. Five years ago, Sino lost all interest in eating and required a feeding tube to get sufficient nutrition.
For Sino and many other frail, elderly nursing home residents, lack of appetite is a common problem, one which can lead to a rapid decline in health, said Dr. John Schnelle, director of the Anna and Harry Borun Center for Gerontological Research.
Weight-loss prevention is one of the principal areas of investigation at the Borun Center, a joint venture between JHA and UCLA’s David Geffen School of Medicine. Housed on the JHA campus in Reseda, the center was established in 1989 to identify and test nonmedical measures that could improve daily care and quality of life for nursing home residents. Given that the number of people 85 years or older is expected to almost double in 25 years, the center’s research is of growing interest to the government, private industry and the public.
While the Borun Center utilizes JHA to test and pilot numerous interventions, it also conducts research at facilities throughout the country. In addition to preventing weight loss, current projects focus on preventing mobility decline, detecting pain, preventing pressure ulcers and managing incontinence.
The center has used research findings to develop protocols, available on its Web site, for use by nursing homes. The strategies focus on everyday routines, rather than on medical interventions.
“Once a person is frail enough to enter a long-term care facility, they’re usually taking five to six medications,” Schnelle said. “They are less inclined to do surgical or pharmacological interventions. What they want is for their pain to be managed and their incontinence taken care of and for staff to treat them in a reasonable way.”
The Borun Center is currently working with the federal government’s Center for Medicare and Medicaid Services to improve methods of evaluating nursing home care. Current methods don’t always provide the most reliable information, according to Schnelle. Not only are the elderly less likely to complain, he said, but the phrasing of questions can influence their responses.
“Asking, ‘Are you satisfied with how often you are taken to the bathroom?’ will typically generate a yes response, even if that is not the case,” he explained. “Asking, ‘How many times would you like to be helped to go to the bathroom?’ and ‘How many times are you taken to the bathroom?’ is more likely to reveal the discrepancy between what residents want and what they get,” he noted.
Schnelle said that most nursing homes are understaffed and that in the typical facility, residents are taken to the bathroom only once a day. (He also said that, in all measures the center looks at, JHA exceeded all other facilities studied.)
The Borun Center’s nutrition and weight-loss study at JHA identifies strategies to prevent the decrease in eating and fluid intake common to nursing home residents. Schnelle cited depression and appetite change as two principal causes.
“Food doesn’t taste as good, and they simply don’t care as much about it as they once did…. But you can reverse the decline if meal time becomes social.”
Sino’s improved eating came about not because of a change in her food, but in how it was presented and served. Using Borun Center study results, JHA’s Special Care Center systematically incorporated eight measures — including greeting residents by name and providing verbal encouragement — which had been shown to boost caloric intake among certain residents by about 300 calories a day.
“At some facilities, a food tray is placed in front of the resident, and that’s it,” said Susan Leitch, community manager for the Goldenberg-Ziman Building.
In her facility, servers take plates off the serving tray and place them, restaurant style, before the residents. Containers are opened and meat is cut for those who require assistance. Residents are greeted by name and offered substitutions for foods they dislike.
Nursing aides and other staff sit with residents or stop by their tables with encouragement. “Try this. This is good,” one says. “I know you like chocolate,” says another as she presents a bowl of ice cream to a resident.
In addition, snacks are incorporated into activities as a way to boost caloric intake, and family members are encouraged to bring treats that they know their relative enjoys. Sino, for example, ate the pieces of chocolate her son offered her, even when she was still using the feeding tube. He credits the chocolate with renewing her interest in eating.
Not surprisingly, the interventions identified by the Borun Center require greater staff time. That means higher costs.
Molly Forrest, JHA’s CEO, acknowledged that those costs present a challenge. Approximately 80 percent of JHA residents are on Medi-Cal, and the reimbursement received does not cover the expenses incurred.
“Quality is a costly item,” Forrest said. “The needs are so great, and those needs can only be met by the hands of a caregiver.”
Schnelle suspects these interventions also prevent hospitalization and prolong life. But even if they did not improve clinical outcomes, he believes improving quality of life for the frail elderly is justified from a moral point of view.
“I think we have to be very clear about the staffing requirements needed to provide good care and let people make choices,” he said.
For David Swartz, the choice is clear. Sitting with his mother at lunchtime, he beams. By the time she’s done, only one tiny bite of blintz remains on her plate.
For more information, visit www.borun.medsch.ucla.edu.
A Big Impression
I’m too old to have heroes. But for those who live their lives with courage, I can make an exception. Like the Impressionists, for instance, whose lives of self-sacrifice I was trying to share with my class of older adults.
“OK, everyone,” I say, “whoever’s not here, raise your hand.”
Naturally, Saul raises his hand. Maybe I should explain.
My senior students suffer from short-term memory loss, a condition less severe than Alzheimer’s and dementia but nonetheless frightening. They can recall exact moments from decades past, but in the present, from one moment to the next, many don’t remember who or where they are. Sort of like elected officials.
“Are you saying you’re not here, Saul?”
“Are you?” he asks, a sour look on his face.
“Good question,” I say. “Now let’s look at an amazing movement in art called Impressionism. First, we’ll watch a video to appreciate the magnificent works of Renoir, Manet, Monet and Pissarro, because this class is art appreciation, right?”
Nothing. No response. Twenty-five people and not a whisper, not a murmur, not a peep.
“Which art movement are we learning about this morning?” I ask. “Anyone?”
Louise takes a stab at it.
“Yes, but which movement?”
Silence. You can hear a pacemaker ticking. Imagine being able to remember the color of your socks when you were 3, but you can’t remember where you put your shoes five minutes before.
“OK,” I press on, “aren’t these just wonderful, these paintings of nature and the human form? What do you think Saul?”
He shrugs. He sighs. A big, burly man in his late 80s, he sits week after week collapsed in his chair, with his head in his chest, and I can’t get a word out of him.
I continue. “Now in the late 1860s….”
Suddenly, here’s Marla.
“Who does those clown paintings?” she yells.
“Yeah,” she hollers. “I saw a painting with a clown, and there was a tear on his cheek. Who does them? They’re great!”
Clown paintings? We’re talking Renoir here. It’s Monday morning; the class is five minutes in, and I’m wondering if it’s not too late to get my real estate license.
“Red Skelton,” I say with scorn.
“Oh,” says Marla, now softly. “That’s right. Red Skelton. Was he an Impressionist?”
“Yes,” answers Bob. “He did impressions of clowns. He was funny.”
“I used to be funny,” says Jake. “Then I got married.”
“Your wife doesn’t know you’re funny Jake?” I ask.
He makes a face. “My wife doesn’t know I’m living.”
“How about you, Saul?” I ask. “Are you married?”
Slowly, Saul raises his head, waves me off and drops his head back to his chest.
“Saul,” I say, “if you don’t take part in the class, I’m going to have to ask you to bring your parents to school.”
“You’ll have to dig them up,” he replies.
I throw my hands in the air. “Oy!” I exclaim.
“You’re Yiddish?” asks Jake.
“The world’s Yiddish,” I tell him. “Who knows the difference between a shlemiel and a shlimazel?”
“The shlemiel spills the coffee on the shlimazel,” says Jake.
“OK,” I say, “now how many of you know that one of the leading Impressionists — Pissarro — was a Jew?”
No response. Nothing. Nada. Bubkes. Maybe I could become a plumber. I already have a wrench. I know I saw one somewhere in the garage, I think, a month ago.
Two hours later, I’m exhausted. One last time, I explain how much the Impressionists believed in themselves and what they were trying to accomplish.
“OK,” I say, “what have we learned today? Nellie?”
“Nothing,” she says, cheerfully.
“Nothing? I’m up here talking for two hours, and you’ve learned nothing?”
“We remember nothing,” says Molly.
“Yeah,” says Ray. “Don’t take it so personal.”
Oh. OK. Surely, the West Valley could absorb one more real estate agent.
“What about you, Vivian?” I ask. “Tell me one thing you’ve learned about the Impressionists.”
“Stick to your guns,” she says.
“Thank you,” I cry.
On the TV monitor, the video is now showing breathtaking paintings of the French countryside. One last try.
“Has anyone here ever been to France?” I ask.
“France would be a great place without the French,” says Jake.
“Anyone else?” I ask.
Like an ancient tortoise, Saul lifts his head, and staring off into the beyond, mutters under his breath, “I’ve been to France.”
“Hallelujah! Tell us about it, Saul. Did you go to the museums?”
“I was on the beach,” he says to his feet.
“The Riviera, Saul? Girls? Bikinis? Ooh-La-La?”
“We landed in the water,” he says. “All my friends around me were shot. The water was blood. I was on the beach.”
The room goes extra silent, the only sound the air conditioning. My hero lowers his head back to his chest, but not before my eyes meet his. I am 6-foot-4, 220 pounds, and I think I am going to cry.
Wildman Weiner is a credentialed teacher of older adults.
Problems Abound in Pampering Parents
My mother and father are both in diapers. I wasn't at all prepared for this possibility. Dealing with the visual and olfactory aspect of my son's end products when he was a baby was an expected part of being a mom, but it's a completely different matter when it's my parents wearing the Pampers.
My mother was first. A few years ago, she was on a medication for dementia that instead of keeping her memory, loosened her bowels. Both my sister and I had the traumatic experience of being out in public with mom, hearing her gasp, rushing with her to the nearest restroom and then trying to figure out what to do.
It was demoralizing for my mother and very distressing for my sister and me. We learned to carry extra clothes and diaper wipes with us.
Fortunately, my sister and I both have rather sick senses of humor, and we could later laugh (albeit slightly hysterically) when sharing these nightmares with each other. My mother could even laugh about it, but it was colored by obvious pain about her aging and loss of control.
My mother is no longer on that medication and blissfully unaware (because of her dementia) of the fact that she wears diapers. Well, in fact, she actually does notice it, but forgets a few minutes later.
Mom lives in a board and care where, thankfully, someone other than me gets to handle her potty needs. I'm adjusting to the fact that my mother is old and child-like in many ways.
My 86-year-old father is still functioning fine mentally. He's still counseling clients and writing a book about handling fears. He's funny and together and basically still “my dad.”
But two years ago, a stroke left dad partially paralyzed on his right side. A fiercely independent man, this was a real blow to his pride and his view of himself. (The good news is that it forced him to stop driving, something we'd desperately wanted for years.)
After the stroke, dad was a prize student for the occupational and physical therapists, and he can now dress and feed himself, walk with a cane and even slowly type on his computer. He desperately wants to do everything for himself.
But the stroke left him with occasional loss of bowel control, and prostate problems have caused him incontinence. He wears pull-ups.
Dad hates it, and he is terribly frustrated and angry when he has an accident. I went to visit him in Ohio last August, and there was no doubt when an accident would occur, because dad announced it loudly, like a wounded or trapped animal. It was clearly horrible for him to be so powerless.
Much to my dismay, (yes, I confess, I was not thrilled) he often needed help with the clean up after such an accident. He would make his way into the bathroom, close the door, deal with the situation by himself and then he'd shout my name.
The first time I heard him yell, it sounded like panic, and I thought he'd hurt himself. I flew from the living room and threw open the bathroom door.
There he was, sitting on the thrown, his Depends around his ankles. My first thought was, “Oh good, he's OK.”
Then I felt irritated that I was being called to witness him in that state. Then came a childhood memory: dad, sitting on the can, his pants around his ankles, reading the entire Sunday Cleveland Plain Dealer, while my sister and I impatiently asked him when he was going to be done.
But this was different. We are now adults, and I haven't seen my father's rear end for about 48 years. Worse than that, he was ashamed and embarrassed at having to ask for help.
The circumstances during that visit brought up a lot of intense feelings about aging (both his and mine) and about mortality (both his and mine). And there was a deep sense of loss of the father I used to have — really until just a few years ago — who was vibrant, active and independent. We were both grieving.
One morning during my visit, I woke up with a full bladder and headed to the aforementioned one-and-only bathroom. The door was closed.
“Dad, are you in there?” (duh.)
“Hey, good morning sweetie. Don't worry, I won't be long!”
An hour later, he was still in there. Need I say, I was really uncomfortable. I looked in the garage for a pot of some sort. No luck.
Then I thought about squatting in the backyard, but there aren't fences between homes in this small Ohio town. So, I did what any desperate, agile person with a full bladder would do — I used the kitchen sink.
My father was still in the bathroom, so I called my sister. I described the entire scene, and we both had one of our “this-is-terrible-but-we-have-to-do-it-so-let's-find-it-amusing” giggles, which helped.
I have to admit that those first three days with my dad seemed like a month. I felt guilty that I couldn't wait to leave. For most of my life, I had my father on a pedestal.
He could fix anything — including personal problems. He skied and played tennis into his late 70s. He always had words of wisdom when I was in a crisis. He's still a sharp, vibrant man.
But since his stroke, it seems like he's shrinking in many ways. His ability to think of things beyond his physical challenges has diminished, which means a decrease in our usual stimulating, fun interactions.
However, after a few days, dad regained control of his bodily functions, and we did have a final day to talk before I returned to Los Angeles.
As often happens with people facing their later years, dad went back in time. He reminisced about his grandparents and his parents. He cried as he talked about how much his mother and father gave to others and how he admired them.
He recalled what a mensch his oldest brother was and what a bully his other brother was. He confessed to skinny-dipping with my mother before they were married. (Something I wish I'd known when she made such a big deal about me necking in the car with my high school boyfriend.)
Then dad switched to my childhood, laughing as he recalled me (at 3 years old) telling the towering 6-foot, 4-inch gentleman next door that it wasn't “nice to spit.” He also enjoyed reminiscing about the time he bought my sister boxing gloves so that she could hit me when I picked on her. Our shared laughter felt wonderful.
My father's hearing aids weren't working, which meant that most of our two-hour conversation that day involved him loudly saying, “What?” and me shouting my responses at him. I was exhausted and hoarse by the time he informed me — loud enough for the neighbors to hear — that he had to go to the bathroom.
And it was fine.
Ellie Kahn is a freelance writer, oral historian and owner of Living Legacies Family Histories. She can be reached at email@example.com.
Elder Rage: What I Know Now
For 11 years. I begged my obstinate elderly father to allow a caregiver to help him with my ailing mother, but he adamantly insisted on taking care of her himself. Every caregiver I hired to help him said, “Jacqueline, I just can’t work with your father — his temper is impossible to handle. I don’t think you’ll be able to get him to accept help until he’s on his knees himself.”
My father had always been 90 percent wonderful, but that raging temper was a doozy. He had never turned his temper on me before, but I’d never gone against his wishes either. When my mother nearly died from my father’s inability to care for her, I had to step in and risk his wrath to save her life — having no idea that in the process it would nearly cost me my own.
Jekyll & Hyde
I spent months nursing my mother back to “health,” while my father, who was nice to me one minute, would get mad about some trivial thing and throw me out of the house the next. I was stunned to see him get so upset over the most ridiculous things, even running the washing machine could cause a tizzy, and there was no way to reason with him. It was so heart wrenching to have my once-adoring father turn against me.
I took my father to his doctor and was astonished that he could act completely normal when he needed to. I couldn’t believe it when the doctor looked at me like I was the crazy one. Much later I found out that my father had told her not to listen to anything I said, because all I wanted was his money. (Boy do I wish he had some.)
My father had never laid a hand on me my whole life, but one day he choked me for adding HBO to his cable package, even though he had eagerly consented to it just a few days before. Terrified and devastated, I frantically called the police who took him to a psychiatric hospital for evaluation. I was stunned when they quickly released him, saying they couldn’t find anything wrong with him. Similar incidents occurred four times.
I couldn’t leave him alone with my mother, because she’d surely die from his inability to care for her. I couldn’t get the doctors to believe me, because he was always so normal in front of them. I couldn’t get medication to calm him, and even when I did, he refused to take it and flushed it down the toilet. I couldn’t get him to accept a caregiver, and even when I did, no one would put up with him for very long. I couldn’t place my mother in a nursing home — he’d just take her out. I couldn’t put him in a home — he didn’t qualify. They both refused any mention of assisted living and, legally, I couldn’t force them. I became trapped at my parents’ home for nearly a year trying to solve the endless crisis — crying rivers daily, and infuriated with an unsympathetic medical system that wasn’t helping me appropriately.
You don’t need a doctorate to know something is wrong, but you do need a doctor who can diagnose and treat it properly. Finally, I stumbled upon a compassionate geriatric dementia specialist who performed a battery of blood, neurological and memory tests, along with PET scans. He ruled out the numerous reversible dementias, and then you should have seen my face drop when he diagnosed stage-one Alzheimer’s in both of my parents — something that all of their other doctors missed entirely.
What I’d been coping with was the beginning of dementia, which is intermittent and appears to come and go. My father was still socially adjusted to never show his “Hyde” side to anyone outside the family. Even with the beginning of dementia, it was amazing that he could still be extremely manipulative and crafty.
Alzheimer’s is just one type of dementia, and there’s no stopping the progression nor is there yet a cure. However, if identified early, there are medications that can slow the progression and keep a person in stage one longer and delay full-time care.
In addition to slowing the dementia process, the doctor also prescribed anti-depressants, which made a huge difference in my parents’ moods. My father also received anti-aggression medication, which smoothed out his damaged impulse control. Once their brain chemistries were properly balanced, I was better able to implement behavioral techniques to manage the changing behaviors. Then, I was finally able to get my father to accept a caregiver, and with the use of adult day health care for them, and a support group for me, everything finally started to fall into place.
One out of every 10 persons by the age of 65 gets Alzheimer’s, and nearly one out of every two by age 85. Had I been shown the “10 Warning Signs of Alzheimer’s,” I would have realized a year earlier what was happening. If this rings true for you about someone you love, I urge you to reach out for help sooner than later.
Ten Warning Signs of Alzheimer’s
1. Recent memory loss that affects job skills
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation of time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood or behavior
9. Changes in personality
10. Loss of initiative
Jacqueline Marcell is an author, radio host, national speaker and advocate
for eldercare awareness and reform. She wrote “Elder Rage, or Take My Father…
Please! How to Survive Caring For Aging Parents” (Impressive Press, 2001). Visit
Mom and Dementia
My mother sounded upset when she called the other day. "What’s wrong, Ma?" I asked. "I don’t know what’s going on or where I am she said. "Who are these people with me?"
I reminded Mom of her move to Los Angeles three years ago, and her life at a San Fernando Valley board and care.
She sighed and said, "Ellie, I’m losing my marbles."
The painful truth is she’s right. Mom’s dementia impacts so much in her life. Once an avid reader, she can’t remember the plot of a book after the first page. Eventually, she stopped trying. Reading her short articles in the newspaper holds her attention for a while, but since she doesn’t know what’s going on in the world, most news means little to her. Mom and the other women in her residential care home occassionally watch CNN. It’s hard to tell if any of them really know what’s going on. Like my mother, their intelligence is intact, but for most their short-term memory is gone.
Recently when I was there, we watched images from a terrible suicide bombing in northern Iraq. My mother was horrified. I reminded her about Bush and the war in Iraq and she made some disparaging comments about Bush’s intelligence. Fifteen minutes later, my sister called from North Carolina. I leaned close to the phone at Mom’s ear so I could listen. After the usual chatter about the weather, the dogs and my mother’s digestion, my sister said, "Isn’t what’s happening in Iraq just horrible?"
Mom said, "It certainly is."
Then she covered the phone and whispered to me, "What happened in Iraq?"
She sounded concerned and looked anxious, like she should know. But any memory of what she’d just seen on the news was gone.
Though much of what’s happening to my mother’s mind is painful, there are moments of levity caused by her dementia. In fact, Mom is very often amused by her own forgetfulness. While her short-term memory is gone, her wonderful, slightly sick sense of humor is intact.
Last year, my mother and I went to my Uncle Bob’s funeral. We were escorted to front-row seats at the graveside and after a moment my mother looked at the casket and loudly said, "Who died?"
Heads around us turned. Mom looked at me, her embarrassment quickly shifting to amusement and she started to giggle. Then I started to giggle. I was reminded of Friday night services years ago, when my mother would start to sing, very off-key, and we’d both end up with tears rolling down our face from trying to swallow our laughter.
After Uncle Bob’s funeral, Mom and I were sitting on the sofa at the reception, enjoying a sandwich and a little wine. Mom stopped chewing suddenly. "Where are we?" she asked me.
"Carole and Bob’s house," I responded.
She glanced around the room, then said, "Where’s Bob?"
I almost choked. I looked at her and whispered, "We just buried him."
She looked completely confused, then we both burst out laughing. We got a number of suspicious looks from people around the room who probably thought we’d had too much wine.
Then there was the morning after the Queen Mother died. My mom was living at her former board and care, and during breakfast another resident, Sally, was reading the newspaper. She suddenly said, "The Queen Mother died."
My mother looked up from her oatmeal and asked, "Really, how old was she?"
"Let me look," Sally said. "She was 102."
My mother responded, "Isn’t that wonderful!" Moments passed. Then Sally, still reading the paper, said, "Did you know the Queen Mother just died?"
My mother replied, "No. How old was she?"
Sally read further, then said, "She was 102."
"Imagine. Isn’t that wonderful!" exclaimed my mother. This same conversation apparently repeated for 10 minutes, both women enjoying their exchange over and over again.
Maybe this is the upside of my mother’s dementia. Each moment is totally new. In fact, for her, each moment is all there is. While most of us agonize over the future or analyze and regret the past, my mother — having lost track of the past and lacking the ability to imagine the future — lives wholly in the present.
Ellie Kahn is a family historian, journalist and documentary filmmaker.
She can be reached at firstname.lastname@example.org.
Twice in the past couple of days, I’ve been in conversation and found myself grasping for a word. On both occasions, my 4-year-old supplied the word before I could come up with it. And, of course, there are the times that I walk into a room only to realize that I have no idea what I wanted to do once I got there. Are these natural lapses or early signs of something more sinister?
"We are all one day closer to Alzheimer’s disease," Dr. Gary Small says forebodingly in his book "The Memory Bible: An Innovative Strategy for Keeping Your Brain Young" (Hyperion, 2003). "Alzheimer’s and dementia begin forming in our brains much earlier than anyone previously imagined, even in our 20s."
Fortunately, we can thwart — or at least postpone — this progression.
"It is never too late or too early to protect our brain cells and delay memory decline," writes Small, who is the director of the UCLA Center on Aging. "By using games, puzzles and some new approaches to daily activities, we can improve our short- and long-term memory abilities and possibly prevent future memory loss and Alzheimer’s disease."
The good news about Small’s "anti-brain aging" program is that all of the recommendations are pretty basic. They do not require exotic terminology or elaborate equipment. The bad news is that change isn’t instantaneous. Beyond the memory tricks and techniques, the plan calls for making fundamental changes to diet, amount of physical activity and stress levels — easier said than done.
Launching into the book, I started with the memory self-assessment, which identified my degree of "memory challenge" as "moderate." (It took me four tries to correctly tally my score, so I guess my mathematical abilities would rate as "pathetic.") In another test, I was able to recall six out of 10 unrelated words 20 minutes after reviewing the list.
Small’s principal memory technique is called Look-Snap-Connect. "Look" means to truly pay attention. For example, most of us are so busy thinking of other things when we’re introduced to a new person, that we understandably can’t recall their name just minutes later. This step involves actively focusing on what you want to remember, taking time to absorb details and meaning. "Snap" refers to creating a mental picture of the information, such as visualizing a frankfurter to remember the name Frank. "Connect" involves combining mental pictures in a meaningful way, creating a story of sorts that will help you retain and access what you want to remember.
Another strategy is called chunking — dividing a large group of items into smaller groups or groupings with common characteristics. The "Roman Room" technique involves visualizing a familiar room and mentally placing items to be remembered — for example items on a grocery list or the topics of a lecture — in specific locations within the room. Small also presents the Peg Method as a way of "forever removing uncertainty about remembering numbers." I thought I’d try it to learn my husband’s Social Security number, but the method requires creating and memorizing visual images for each of the 10 digits, then linking the images in a story. That seemed like much more effort than simply memorizing the number the old-fashioned way.
When it comes to brain power, Small believes in the "use it or lose it" philosophy. He recommends "a daily regimen of mental aerobics," which can involve such activities as crossword puzzles, brain teasers and other endeavors that keep us mentally stimulated. He cites research that found that the risk of developing Alzheimer’s disease was three times lower in people who had been intellectually active during their 40s and 50s compared to those who hadn’t.
Beyond the techniques and the brain teasers, Small’s recommendations are the same ones we’ve all heard repeatedly for maintaining wellness and staving off disease: following a low-fat diet, reducing stress, staying physically active, getting sufficient sleep, balancing work and leisure, avoiding tobacco and other drugs, and engaging in meaningful activities and relationships. He does offer some specific dietary recommendations, including taking 400-800 units of vitamin E and 500-1,000 milligrams of vitamin C daily, as well as eating foods — such as avocado, salmon and walnuts — that are rich in omega-3 essential fatty acids.
Will it make a difference? I tried to memorize another list of 10 words — and, this time, I could remember nine of them. But having just finished the book, it’s too early for me to tell how much of a change it will make in the long run. And much of that depends on how thoroughly I follow through on the book’s recommendations. So I made a list of the steps I plan to take as part of my new memory regimen. But just in case the list gets lost, I’m also telling my 4-year-old.
The UCLA Center on Aging holds classes in improving memory. For more information, call 310 794-0676.
Failing Minds Fall Prey to Holocaust
"Why did you come? Go, go before it’s too late," Laja Szydlowski warned her daughter, Hanna. She then whispered, "They’re killing people here. You don’t understand."
This encounter did not take place in 1940, with Szydlowski holed up in a cramped apartment in the Lodz ghetto in Poland. This happened less than a year ago, in a cheerfully furnished room at the Los Angeles Jewish Home for the Aging (JHA). However, in Szydlowski’s mind, she was back in Lodz. This time the ravages of Alzheimer’s disease, rather than the Nazis, imprisoned her.
"What happens," explained Dr. Marla Martin, a clinical psychologist who has worked intensively at JHA for more than 10 years, "is that the sense of time is impacted by dementia, and the person again becomes the young man or woman struggling against all odds to survive."
Szydlowski, 93, has been reliving the Holocaust for the past six or seven years, according to her daughter, Hanna Golan. However, her Alzheimer’s disease has now progressed to where she can no longer verbally communicate. "She is constantly crying," Golan said.
Szydlowski is one of an estimated 11,000-12,000 Holocaust survivors living in Los Angeles County, whose average age is 81. With nearly half of all elderly people 85 or older affected to some degree by Alzheimer’s or other dementias, according to the Alzheimer’s Association, the number of those Holocaust survivors, who are reliving in their minds the roundups, selections, starvation, brutality and the killing of family members, often in their presence, is significant.
Even without dementia, many survivors have nightmares, fear abandonment, act secretively and read anti-Semitism into innocent interactions. They react adversely to such seemingly normal activities as standing in lines or dealing with uniformed personnel. Some even avoid the oil well on the Beverly Hills High School campus, now painted with flowers, because it is a reminder of the smokestack at Auschwitz.
Helen Zisner, 82, who is in early stages of dementia and living at the Vista del Sol Care Center in Culver City, is not catapulted back into the Holocaust but reacts to certain stimuli.
"You can’t approach her from behind," her son, Benjamin, said. "She’ll ask, ‘Who are you here for?’ because she’s reminded of guards entering her concentration camp barracks."
But for survivors with more pronounced dementia, the Holocaust experience exacerbates the paranoia and suspiciousness, and, Martin said, "Those people are much more likely to experience flashbacks."
JHA, with a population of 800 residents, houses only 41 Holocaust survivors in its residential and skilled-nursing facilities, according to Laurie Manners, administrator of the Grancell Village campus. The number is small but, with over two-thirds of them suffering from some degree of dementia, the behaviors stand out.
"We have people who hoard food, who stockpile it in their rooms," Manners said. "And we have one resident who is convinced that noxious fumes are coming in through his air conditioning vent. ‘It’s poison gas. I’m suffocating,’ he tells us."
Holocaust survivors, who felt so deprived, often cannot adjust to living with a roommate, whom they may believe is plotting against them or stealing their possessions. Some are very distrustful.
Haya Berci, JHA’s executive director of nursing, said, "If something goes wrong, some survivors are afraid to say anything, for fear of retaliation."
They also have issues surrounding money, such as one resident who believed a rabbi had stolen her $50,000. Many want to sleep with their cash. These behaviors happen more readily in an institutional setting, where survivors feel less in control, according to Martin.
"They can react to showering or to undergoing a medical procedure," she said. "They think the hospital is performing experiments on them and their family has been murdered."
Also, she said, many lose the ability to speak and understand English and are frightened by people talking in what they perceive as a foreign language.
Most survivors, however, according to Paula Fern, director of Jewish Family Service’s (JFS) Pico-Robertson Storefront and the Holocaust Survivors Program, like most elderly, generally live in their own homes, alone or with paid caregivers or with relatives.
JFS works with about 650 survivors in their 60s and older, about 10 percent of whom suffer from some type of dementia. Caseworkers in four storefront facilities make home visits, assisting the survivors and their families. Additionally, JFS provides adult day care for Alzheimer’s clients in three locations, as well as respite time for families.
Still, JFS has seen its share of survivors with Alzheimer’s or dementia who, according to Fern, "are caught in the moment of the Holocaust and relive all that terror, anguish, anxiety and peril."
Fern tells of a past client, a physically fit man in his 70s, who, donning a suit, tie and hat, and putting his financial papers and money into a leather briefcase, disappeared. He stayed with various friends, a few days at a time, and only occasionally resurfaced.
"It took a long time to figure out he had been a courier in the Paris underground and was re-experiencing those days," Fern explained. Because he had no family, JFS arranged for a private conservator.
"This phenomenon is not a new revelation," Fern said. JFS has had survivor clients since 1945 and began a program specifically for aging clients in 1997.
Currently JFS has an extensive program for survivors and their families funded by the Conference for Jewish Material Claims Against Germany and the Morgan Aging With Dignity Fund, as well as private donations. Additional training on Alzheimer’s and other aging issues is provided by the Alzheimer’s Association and JFS staff.
"Training, training, training," stressed Berci of JHA, which provides training to new employees, along with ongoing education for all staff members, on Jewish culture and issues, including the Holocaust. Recently, JHA received a grant from Wells Fargo Bank to set up a comprehensive program specifically to assist Holocaust survivors, including those with dementia, and their families.
Interestingly, while the Holocaust population in general is decreasing, this subset is actually increasing as survivors, like the general population, are living longer, and thus are more likely to become demented.
"The cruel irony," geriatric psychiatrist Daniel Plotkin said, "is that dementia doesn’t protect these people. Their long-term memory remains intact."
Plotkin stressed the importance of a trusting relationship, whether it’s with the spouse or a hired caregiver.
For Szydlowski, that trusted person is her husband, Michael, 94, who also lives at JHA and comes to his wife’s room every day before she rises.
"He is afraid to have her wake up and have him not there, because that would be terrible for her," Golan explained. "He doesn’t sleep because he’s afraid of oversleeping."
He stays with her in the Alzheimer’s day room, taking time off only to eat and, at his daughter’s urging, to play bingo a couple times a week.
"I’m not sure she recognizes my father or me, but she feels safe with us," she said. "With everyone else, even nurses who have cared for her for years, she struggles."
For some, artistic pursuits help tame the Holocaust demons. Sam Gal, 81, entered JHA in 1998 and took up painting for the first time. He spent every day in the art room, creating a prolific portfolio of paintings, which gradually became lighter, in both content and appearance. About two years ago, as dementia set in, he was forced to stop.
Medication can sometimes help control the agitation and paranoia, though it can’t prevent flashbacks. People can also often be distracted, with a song or a walk. For those with severe dementia, just holding their hand or talking to them in their language of origin can comfort them.
"Our philosophy is to know each person," Manners said. "What were his hobbies? What did he do for a living? Often, we can calm someone by doing something familiar."
Some known triggers can be eliminated, even in institutional settings. In JHA, patients can be given baths rather than showers. The overhead paging system is rarely used. Bank statements have been simplified, to make them more understandable, and residents have a locking drawer in their room, to securely store their possessions.
Facilities can also be made as homelike as possible. JHA’s Goldenberg-Ziman Special Care Center, which opened a year ago on the Eisenberg campus with 96 beds for residents with dementia, offers lots of sunlight, with floor-to-ceiling windows, carpeted rooms and a soft décor. Some residents simply become less agitated as they become familiar with their surroundings and staff and relax into a routine.
"However," Fern said, "most children are extremely reluctant to place their survivor parents in facilities. It’s a tough sell even to get them into adult day care."
Miriam, who declined to give her last name and whose mother, 78, suffers from Alzheimer’s, arranges care for her parents in their own home. That is also their wish.
"They’ve gone through so much in life," she said. "I don’t want anything at the end of their lives to resemble the hardships they went through at the beginning."
Golan’s parents, on the other hand, independently made the decision to move into the JHA in 1995. She visits them several times a week, though she’s not certain her mother realizes she’s there.
"She’s fighting for her life," Golan said, explaining that her mother’s first husband was beaten to death in front of her, just before her 2-year-old daughter was taken away. She subsequently spent time in Auschwitz, Treblinka and Mauthausen.
"Once was enough," Golan said. "Once was too much."
Remembrance Rites to Mark Holocaust
Two Holocaust remembrance events will be held on April 29 and May 4 at the Los Angeles Holocaust Monument in Pan Pacific Park.
The April 29 observance, starting at 11 a.m., will bring together approximately 1,600 students from 25 public, Jewish and Catholic schools for a memorial program conducted by students and for readings by Holocaust survivors. Each participating school will receive four books for its library.
One of the books is "Abiding Hope, Bearing Witness to the Holocaust," by Benjamin A. Samuelson. The author, who uses a pen name, was forced to work as a member of the sonderkommando, which operated the crematoria. He later was wounded fighting in Israel’s War of Independence. The books are being donated by the Greta Savage Memorial Foundation.
The other three books are "Witness to the Truth," by survivor and philanthropist Nathan Shapell; "The Children of Willesden Lane," by Mona Golabek; and "In the Shadow of the Past, Lest We Forget," the stories of 12 survivors.
Both events are being underwritten by Jona Goldrich, chairman of the Los Angeles Holocaust Monument, and co-sponsored by the Los Angeles Museum of the Holocaust, The Jewish Federation of Greater Los Angeles and Second Generation.
The Holocaust Monument is located at the north end of Pan Pacific Park, between Beverly Boulevard and Third Street, adjacent to The Grove and Farmers Market.
The May 4 observance will be held at 1:45 p.m. Free transportation will be available from Westwood and the San Fernando Valley by preregistration. For information, phone (310) 280-5010 or (310) 821-9919. — Tom Tugend, Contributing Editor
The Search for an Alzheimer’s Cure
“How do you spell fare?” my father asked.
For a man who had spent a lifetime in business, I was taken aback, but I spelled it for him. He was writing a check for my plane fare to Los Angeles, something he generously undertakes whenever I visit Florida. Today, he looked at his checkbook, then at his register, at the checkbook again, then back at his register in increasing increments of confusion.
Each time I tried to intervene, he grew defensive and angry. By the time he was ready to put pen to paper, he had forgotten what the check was for.
That was two years ago, the last time my father wrote a check. For most people in the beginning stages of Alzheimer’s disease, the simplest task, like writing a check, becomes a Herculean undertaking. The brain can no longer process familiar information or function normally. Alzheimer’s, a brain-wasting disease, is characterized by the spread of sticky plaques (clusters of dead and dying nerve cells) and tangles (clumps of protein fragments) in the brain. This “brain debris” causes delicate nerve cells to atrophy, which in turn prevents the production of neurotransmitters essential for firing up memory and reasoning.
As the disease progresses, an afflicted person will eventually lose more cognitive functions and display decreased physical ability, as well as personality and behavior changes. Communication becomes strained as the person struggles to remember words and thoughts; it is not uncommon for people with Alzheimer’s to withdraw from society altogether, finding themselves unable to communicate, remember or reason.
That’s what happened to my father. Once an outgoing man who played golf every morning of his retired life and bridge every afternoon, he slowly lost his confidence to communicate as his short-term memory deteriorated.
Eventually he stopped playing bridge (in actuality, the men threw him out of the game), but he had already withdrawn, unable to remember the easiest hand. This was a huge blow to my mother, who found herself, for the first time in her married life, the one to take charge. Today my father is totally dependent on her care.
Alzheimer’s disease is the most common cause of dementia. According to the Alzheimer’s Association, one in 10 persons over the age of 65, and nearly half of those over 85, have the disease. Today, 4 million Americans have Alzheimer’s. Unless a cure or prevention is found, that number will jump to 14 million by the middle of the century. In a national survey, 19 million Americans said they have a family member with Alzheimer’s; 37 million know someone who has it. In most cases, a person lives an average of eight years — but up to 20 — after the initial diagnosis.
This disease isn’t cheap. U.S. society spends over $100 billion a year on Alzheimer’s disease. Neither Medicare nor private health insurance covers the long-term care most patients require. According to the Alzheimer’s Association, seven of 10 people with the disease live at home, with 75 percent of the care provided by family and friends. The remainder is covered by paid care, costing an average of $12,500 per year. Families pay almost all of that out of pocket.
Nursing homes report that half of their residents have the disease, where the average care runs to $42,000 a year. On the Alzheimer’s Association’s Web site, a 1998 study concludes the average lifetime cost per patient is $174,000.
In Los Angeles, the costs can soar. At the Jewish Home for the Aging in Reseda, the daily cost per person in the Alzheimer’s dementia unit, a skilled nursing facility, is between $175 to $189 per day. The facility is a secured unit with a small ratio of nurses to patients, and offers daily activities for all levels of the disease; for example, adult education for those who are still relatively high functioning, exercise classes for those still fit.
By next year, the Jewish Home for the Aging will open an entire building dedicated to Alzheimer’s disease. Because a person can have Alzheimer’s and maintain good health, the home does not say what the average lifetime cost per person can be, only that it varies widely: some patients may enter the home in the late stages, others may get the disease in their early 70’s and live to be 100.
Recently, there has been a spate of new research. The two best-known studies have shown great promise for understanding the disease. The Nun Study by University of Kentucky epidemiologist David Snowdon, who recently published “Aging with Grace” (Bantam), looks at nearly 700 nuns, studying lifestyle and environment, to determine a variety of factors that contribute toward the disease. Another is the just completed clinical trial using Nerve Growth Factor (NGF), conducted by UC San Diego (UCSD), in which doctors surgically implanted genetically modified tissue into the brain of a 60-year-old woman at the beginning stages of Alzheimer’s.
Both studies leave scientists and doctors optimistic, yet reluctant to conclude that they are any closer to finding a cure.
The Nun Study, conducted over a 15-year period by Snowdon, studied nuns from the order of the School Sisters of Notre Dame, researching their personal and medical histories, testing for cognitive function, and even dissecting their brains after death. Forty-five percent of the nuns, who are now between the ages of 85 and 106, have fallen prey to the disease.
Scientists know that genes play an important role in Alzheimer’s, but Snowdon chose to focus on environmental and lifestyle factors. He found that an active intellectual life; a college education; a flare for words and a good diet all contributed to prolonging a sharp mind. In one study, he found that the nuns who used complex ideas and positive emotions (in written autobiographies that they submitted upon entering the convent) were the ones with the clearest mental faculties, over the longest period of time. He also researched a finding by a British team that found a low level of folate (a nutrient) in the blood of Alzheimer’s patients. After analyzing dissected brains, Snowdon concluded that folate, or folic acid, helped to counteract the effects of Alzheimer’s-type damage to the brain.
But Snowdon is adamant that not one factor alone causes or saves one from the disease. “Blood circulation, medications, nutrition, genetics — there are many links that factor into dementia,” Snowdon noted on NPR’s “Science Friday” on July 6.
The UCSD clinical trial using NGF, led by UCSD neurologist Mark H. Tuszynski and neurosurgeon Hoi Sang U, is more elusive because it is the first-time gene therapy has been used on a human to treat a disease of the nervous system. According to Tuszynski, director of UCSD’s Center for Neural Repair, it will be months before any results are determined, but to date, “there have been no major adverse events.”
In previous studies, NGF has been shown to be effective in reversing the signs of aging in primate brains. In a study in 1999, the atrophied brain cells of aging monkeys were returned to nearly normal size and quantity following the surgical implant of cells genetically altered by NGF.
In the UCSD procedure, NGF was inserted into a sample of the patient’s skin cells. Over the next few months, the modified cells produced a high quantity of NGF, which was then implanted into the patient’s brain. The procedure targeted an area of the brain important for memory and cognitive function.
“NGF gene therapy is not expected to cure Alzheimer’s disease, but we hope that it might protect and even restore certain brain cells and alleviate some symptoms, such as short-term memory loss, for a period that could last a few years,” Tuszynski said.
The current patient clinical trial is taking place through UCSD Alzheimer’s Disease Research Center (ADRC), one of five centers supported by the National Institute of Aging of the National Institutes of Health. Currently there are 30 ADRCs in the country.
Dr. Leon Thal, head of UCSD’s department of neurosciences, which oversees the clinical trials, believes, like others in the field, that it is important to make an early diagnosis concerning Alzheimer’s. “There are medications to treat Alzheimer’s symptoms — four [cholinesterase inhibitors] are now FDA-approved.” Also every patient “has the right to know what disease he has,” Thal said.
Some patients, however, may not want to know. With clinical trials still in the experimental stage, and any effective medications to prevent Alzheimer’s years away, finding out might be considered a death sentence. But with research spanning the globe, and technological breakthroughs on the horizon, doctors and scientists are sounding more hopeful.
Neurologist Rudolph Tanzi, author of “Decoding Darkness: The Search for the Genetic Causes of Alzheimer’s Disease,” speaking on “Science Friday,” said that in the next five to 10 years, new medications will halt Alzheimer’s-type damage to the brain before symptoms hit.
“Prevention is the name of the game,” he said. These medications, he pointed out, are similar to the protease inhibitors used by AIDS patients, and will target those genetically predisposed to Alzheimer’s disease.
Snowdon, who recently received funding to publicly endow the Nun Study, has stated that there is strong evidence that the tangles and plaques found in Alzheimer’s patients starts decades earlier — another reason to focus on preventive measures to stop the damage to the brain. For now, Snowdon feels confident enough to suggest a few easy lifestyle measures, to stave off memory decline: intellectual activities to stimulate the brain, avoiding head injury and strokes (low-cholesterol diet), eating fruits and vegetables, and using a multivitamin and folic acid supplement.
“This is a family disease,” Snowdon concluded. “It touches everyone.”
The following organizations can be contacted for more information about Alzheimer’s disease.
Alzheimer’s Association is a nonprofit group that supports patients, families and researchers: www.alz.org.
Alzheimer’s Disease Education and Referral Center is a National Institute on Aging service that provides information on the disease and links to a clinical trials database:
Eldercare Locator is a government-sponsored service that provides information on resources for older persons: (800) 677-1116.
American Academy of Neurology is a professional association providing information on new clinical practice guidelines for Alzheimer’s:
My Brother’s Keeper
My brother, who at 70 is younger than me by two years, has a world-class collection of the mysteries of Agatha Christie and a complete set of the novels of Anthony Trollope. They are being joined, gradually, by the Greek historians and Galsworthy’s Forsythe Saga.
These volumes, together with the Wall Street Journal, the New Yorker, the Economist and other publications to which he subscribes, sit on a bookshelf and rolling table by his bedside in a nursing home about one mile from our home in Providence, RI.. My brother never married or fathered children so on the wall over his bed are pictures of our parents and my wife and daughter. If I could locate them I would also find place for his doctoral degree in economics from Harvard and his law degree from New York University.
But they have been lost over the years of his illnesses, which began in his 20s with schizophrenia and now include Parkinsons, some dementia and occasional seizures. These have so debilitated him that he rises from his bed now only to shuffle slowly behind his walker to the bathroom.
I visit him three or four times a week, bring him another book, straighten out his bookshelf, give him news of those of his friends who still call me to ask of his condition, and sit for a half hour or so by his bed just to let him know that I am there. There is little verbal communication between us since he finds it difficult to understand what anyone is saying and often simply doesn’t respond.
For half a century we had no contact with each other. I lived as an adult first in Jerusalem, then Los Angeles and now Providence. For some of those years he was institutionalized. When schizophrenia became controllable by drugs he began to write textbooks on economics one of which, on anti-trust legislation, is still in the libraries of many universities.
Later my brother moved to New Zealand where he was an advisor to the government on economic matters.
I did not hear from him until several years ago when, babbling incoherently, he wandered into a doctor’s office in Manhattan and was placed in a hospital. He remained there for a year, during which I visited him weekly and finally succeeded in having him brought to Rhode Island, having found a nursing home both clean and compassionate.
When he came here last year, my wife outfitted him with an electric typewriter, paper, a small desk, a dictionary and a thesaurus. He spent several hours each day writing charming little stories about animals and even began a memoir about his years in New Zealand. I hoped that we might be able to publish some of his writings but gradually he lost interest and also the dexterity required to type. Today the typewriter gathers dust as do the TV and the VCR, neither of which he can operate or in which he has any interest.
Often when I visit he is sleeping, the effect I imagine of some of the drugs he takes. I try to rouse him just to let him know that I am there but he rarely awakens. I place the newest book on his table, spend a few minutes straightening out his things and leave, guiltily relieved if truth be told, that I have the half hour free to attend to other matters. If he were in a coma or otherwise near death I would stay, hold his hand to let him know he was not alone, and read by his bedside although neither Christie, Trollope nor the Economist are my preferences.
He has support in addition to my visits. The Rhode Island Jewish Federation sends a rabbi to visit him and supplies him with religious objects necessary to observe the Jewish holidays. And the nursing home staff bought him some Christmas cookies and chocolates so that he would not feel left out of the celebrations. I would like to be able to ask him about his life in New Zealand, his opinions about the Microsoft anti-trust case, and other matters about which he has some expertise. As the only Republican in a family of liberal Democrats, his thoughts on impeachment would be interesting to hear and to discuss.
But he is past all that now. His days and nights are spent in bed, moving restlessly from a lying down to a sitting up position and back again. The doctors tell me that this is a symptom of his illness and that all of his problems are progressive; that he can remain this way, his mind functioning but his body helpless for some years to come.
In the meantime I note a slight improvement. He has remembered another author he would like to read, Angela Thirkell, a British novelist. I have checked with Books in Print; Ms. Thirkell’s novels have recently appeared in paperback. There are a good number of them; my brother’s reading schedule is set for several months to come.
Yehuda Lev writes from Providence, Rhode Island.