Once, when his wife started screaming in a restaurant, the waitress thought he was abusing her. He explained that his wife had AD, then quickly paid the bill and left. He thought it would be nice to take his wife out to eat, but it wasn’t worth it anymore.

The most common form of dementia, AD can mimic other diseases. Brain tumors, depression, other neurological diseases (some treatable), nutritional deficiencies, drug reactions, and thyroid conditions need to be ruled out, writes Faith Heinemann,  Ph.D, in A Different Reality: An Alzheimer’s Love Story. She started an Alzheimer’s support group when her husband got sick because she realized how important support is. Faith describes those years before her husband died as a tragically beautiful time in their marriage. That’s when life taught her about unconditional love.

Faith and Claudia met while walking on the beach. They used to walk alone. Now they enjoy walking together soon after  sunrise.  They  like the sounds of the waves crashing and the crying gulls. The dolphins swim by and some days, a pod lingers to play.  lt’s like a personal show nature puts on for them.

Claudia isn’t big on coincidences or magical thinking. Her family comes from the old country: She’s grounded in her approach to life; things are what they are, and what you see is what you get. But it did strike her as comfortingly odd when she met Faith for the first time. They started talking one day when they were both walking alone on the beach. Only days before, Claudia had crossed that line – the one most people get pushed over – from thinking her mom was forgetful to admitting that her mom was sick. Alzheimer’s disease was corroding Claudia’s mom’s mind.

Faith is the person who welcomed Claudia to the Someone I Love Has Alzheimer’s Club. At first when her mom was diagnosed with AD, Claudia felt singled out, alone in her dilemma. Then it changed, and it seemed like everyone Claudia met had a family member with the disease. Was there an epidemic going on?

Faith gave Claudia a copy of the book she’d written and invited Claudia to attend her AD support group. “No, thank you,” Claudia said at first. Claudia preferred to keep family problems at home, where they belong. How would going to a group help? Besides, Claudia already had enough to do. Sitting around listening to other people complain wouldn’t change a thing. At the end of the day, whether she went to a group or not, Claudia’s mom would still be sick. Attending the group wouldn’t make her mother’s illness or Claudia°s pain go away.

Most people have an average of eight years to live after being diagnosed with AD, although some people live for another twenty. It’s a disease that can’t be cured, although there are medications, techniques, and nutritional supplements that may slow the disease’s progression and ease discomfort. AD is diagnosed by carefully monitoring symptoms and ruling out other possible causes. But the clumps of plaque and tangled fibers that corrode thinking and positively indicate AD can be visibly detected in the brain only by an autopsy.

Red flags signaling Alzheimer’s are forgetfulness, disorientation, personality changes, impaired judgment, and loss of ability to perform routine tasks (like brushing teeth or writing checks). People with the disease might ask the same question repeatedly, forgetting that it was asked and answered minutes ago. They’ll tell you the same story over and over because they don’t remember they already told it. Then symptoms worsen. lt hurts when someone you love can’t remember who you are. lt’s even worse when they act like you’re a stranger and scream at you to go away. Soon they can’t find their way to familiar places. They can no longer drive, cook, take care of themselves. lt’s unsafe to leave them alone. They could start a fire, get lost, injure someone else or themselves. Some people with AD get lost in their neighborhood or in their own home. It’s a marker that the end is near when they no longer recognize themselves in the mirror. The day comes when they can’t remember how to chew or swallow. Eventually AD ends in death. Some forms of dementia can be reversed, but the dementia from Alzheimer’s only gets worse.

“lt’s a disease that affects the people who love the person with AD more than it hurts the person who has it,” Faith says. The person with AD usually doesn’t have the consciousness to recognize what’s going wrong. Memory fades so much they forget what life was like and how they were before the illness began.

“I’m one of the lucky ones,” Claudia says. “My mom doesn’t become angry or violent. lt’s easy to care for her. She’s like a sweet, innocent child.”

Claudia’s mother wasn’t that ill with AD until the family got the news about Claudia’s brother, John.  Claudia and her sister were close, but John was the family favorite. He  had some troubles. He went overboard with drinking and had a marriage that ended in divorce. Then he went to an alcoholism treatment center and became clean and sober. He was always lovable, but he was the greatest after that. He became a model Father to his children and a good ex-husband to his ex-wife. Lately he had been overly attentive to everyone in the family and his friends. Now Claudia understands why.  John was saying good-bye.

He went over a speed bump on his motorcycle. How could anyone die going twenty miles an hour? His helmet didn’t protect him; he knocked his brain stem loose. Losing John broke his mother’s heart. When Claudia’s mom attended John’s funeral, she understood clearly what happened. Her only son was dead. Then Claudia’s mother went downhill fast. That’s when Claudia joined the support group. It wasn’t that Claudia couldn’t handle it on her own anymore. Just like she enjoys her walks on the beach with Faith, Claudia wants to go on her journey through her mother’s AD with understanding people at her side.

We is more powerful than I or me. Groups, especially well-functioning, sane ones, aren’t about people complaining, being victims, and groveling in misery.  Groups are a safe place to say how we feel, a place to give and receive support. But something beyond mere support takes place in a group. Together, we are more than you or I am alone.

I saw the power of the group illustrated most clearly when I was climbing Emei Shan, a mountain in China. Mountain climbing in China sometimes means climbing up hundreds of thousands of steps. It can take days to get to the top of the taller mountains. Many times I became so tired I had to stop and take a break. Other times l’d push myself to keep going. One day something happened on Mount Emei that showed me another way to gain strength when I was tired. I was flagging, about to collapse on the steps from sheer exhaustion, an aching back, and hurting feet, when a group of women appeared from the rear. These Chinese women were strangers to me, as I was to them. They didn’t speak English; I didn’t speak Chinese. But we instantly bonded by our mutual desire to climb to the top. We belonged to the same club. They could see I was wearing out. Anyone could see that.

One woman grabbed hold of my left hand; another woman tightly clasped my right hand. Two ladies got in front of us. A few settled in behind. As a group we climbed step after step. My fatigue disappeared. I felt renewed energy to carry on. There is a pronounced and noticeable strength that comes from being part of a group, whether we’re climbing a mountain in China or climbing one in our life. Are you caring for a loved one with Alzheimer’s, dealing with the death of a child, recovering from an addiction, healing from cancer, or dealing with a chronically ill spouse? Reach out and let someone take your hand. Help each other get to the top. Together, you will have more strength than any of you have alone.

That’s the power Claudia discovered when she attended the AD support group. “My mother got so much worse after my brother died,” Claudia said. “She went downhill rapidly. 1 was having a terrible time myself.  I love my brother and missed him so much. I still do. I can’t remember ever crying that hard for that long in my life. I didn’t know people could feel that much pain. Being in that much grief was a place I didn’t know existed until then.

“This sounds strange, but after my brother died, 1 was grateful that my mom had Alzheimer’s disease,” Claudia said. “It was a blessing because she forgot John died. She doesn’t talk about him often, but once in a while, she still mentions his name. ‘I haven’t seen John,’ she’ll say. ‘Have you heard from him?’ I’ll tell her I talked to him and he’s fine. At least Mom doesn’t have to spend the last years of her life grieving the loss of her son.

“I hear people whine and complain who don’t have a serious problem, and I want to shake them,” Claudia said. “They don’t know what real emotional pain is. Then there is that group of people who have never experienced major loss. Those are the ones who don’t get it, who don’t understand at all what I’m going through. I’m happy for them, that they haven’t had any serious loss yet. But I want to warn them, tell them nobody is immune from this big, deep pain in life. Sooner or later, it’s coming for everyone, and one day it’s going to be their turn. I don’t mean that in a spiteful way,” Claudia explained. “But eventually loss is part of everyone’s life.”

Claudia didn°t just lose her brother to death and her mother to Alzheimer’s. Claudia lost her innocence.  There’s a dark tunnel that many of us go through when we lose our innocence and see what life is really like. We can lose faith, become cynical, and feel disappointed in our lives. Something else, something deeper is simultaneously taking place. We’re being introduced to radical faith.

Radical faith is different from the simple faith many of us had, the faith that says, If I do good things, then only good things will happen to me. If I’m a good person, people I love won’t die. God will protect and take care of me and the people I love. Radical faith is bold. lt’s not squeamish, fundamentalist, judgmental, or blaming. It’s courageous. It says, I can he a good loving decent human being and still he vulnerable to tragedy. My world can he shattered in a moment. Life can he viciously cruel but it’s still worth caring about. Disasters happen to other people and they can happen to me, and it’s nobody’s fault. When we surrender our defenses, our innocence becomes restored. Faith then becomes a matter of will, something we declare. I will have faith in life, we say: We laugh again. Our hearts are stronger than we think.

Claudia still enjoys walking on the beach with her friend Faith. She enjoys attending the support group too. People who have Alzheimer’s have constantly changing needs. As the disease progresses, more loss appears. lt helps to talk about the situation. People learn from each other. We might think that talking about feelings won’t change a thing, but emotional validation is a healing technique. When how we feel is validated, we move out of resistance and into balance. We acknowledge the emotion. Confusion lifts. We know what to do next. Groups help people stay present and real.

The local Alzheimer’s support group meets in a back room at the Catholic church in the town where Faith and Claudia live. Once a month on a Saturday morning, people begin filing into the room. Some bring chips or homemade cookies. The smell of brewing coffee and the sounds of people talking fill the room. The people attending are a diverse group, middle-aged or older. Many look tired. The meeting begins.

“lt finally happened,” Claudia announces. “The selfish jerk left.” The jerk is her stepfather. He’s been with her mother for thirty years. Unlike Faith, who used the opportunity of her husband’s illness to learn unconditional love, Claudia’s stepfather chose to leave. “We’ve been expecting ir,” Claudia says.  We means Claudia and her sister. They take turns spending the weekends with their mom. “I’m glad he left,” Claudia said. “We had to hire full-time nursing care anyway because he wouldn’t do anything during the week. I get so angry at him,” Claudia said. “He had the nerve to say to Mom, ‘You’re getting to be a bit much, aren’t you?’ I wanted to physically harm him when he said that. Now we don’t have to look at his face every weekend when we’re there. Mom doesn°t know he’s gone. She doesn’t remember being married to him.”

One woman in the group says she feels irritated, drained, and annoyed. Her relatives are squabbling over money and inheritance issues. She talks about how money can bring out the worst in people instead of letting the illness bring out love. Other group members agree. One woman looks tired. All she wants to do is listen today.

Faith started the group when she was taking care of her husband, Al. He began displaying symptoms of AD in 1993.  ln 1995 he was diagnosed. Faith took care of him at home through the days when he looked at her and didn’t recognize her until his death. A respected therapist in Los Angeles, Faith is still committed to the group even though she no longer lives with AD. She says helping other people helps her feel good. Giving away what we want to keep is one of the oldest feel-good tricks in the book. Sharing the growth we’ve experienced makes our growth real. The more hope we give away, the more we have.

Faith tells her favorite story about the day she left her husband at home with a nurse°s aide while she went to do errands. After Faith left, her husband tried to leave the house. He made it as far as the garage. He was hiding there, waiting for his chance to escape, when Faith pulled into the driveway and pressed the remote button to open the garage door. His opportunity arrived! The door opened. Al darted out of the garage. He pressed the remote button on the way out to lower the garage door to block the aide, who was in hot pursuit. Faith instantly pushed the button to open the door. She didn’t want the door slamming down on her husband or the aide. Her husband pushed the button to close the door. The door went up, down, up, down. Finally Faith captured her husband and brought him into the house. By then the three of them – Faith, Al, and the aide were tired. They were worn out from laughing about the slapstick comedy that had just taken place.

“lt’s crucial to maintain a sense of humor,” Faith tells the group. “You’ve got to look at the lighter side. You have to laugh to survive.”

Something biochemical happens when we laugh, whether it’s a chuckle or laughter that comes from the belly. Doctors agree that laughing changes body chemistry. Laughter heals. Daily or PRN (as needed) tee-hee. Think it’s irreverent to laugh or that our dilemma is too solemn for jokes? lt’s not. Whatever situation we find ourselves in, the law of humor applies to us.

A grief specialist attends the group whenever he can. This Saturday he passes out an article written by Darryl Potyk, M.D., announcing that the number of people with AD is expected to quadruple over the next fifty years.

“Why?” group members ask.

“Because we’re living longer,” the grief specialist says. The one thing that puts people at risk for getting Alzheimer’s is getting old, and more of us are doing that because we’ve become so skilled at prolonging life.

Claudia shares happy news. Most of the time her mom doesn’t remember who Claudia is anymore. But last weekend her mom put her hand on Claudia’s cheek. “Oh, l know you,” her mom said. “You’re my beautiful Claudia.” The moments of remembering are precious. They’re becoming rare.

Alzheimer’s disease is an ambiguous loss. We’re losing someone we love, but when do we say good-bye? The losses from AD change and increase over time. lt’s a situation where the people who do best are people willing to surrender control. Some people associate powerlessness with admitting that they can’t control their use of alcohol and drugs, but many life situations are out of our hands. Peace comes when we acknowledge that. By surrendering to each moment, we see what we need to do to care for the other person and ourselves. Surrendering is a powerful technique. It’s different from coolly detaching, compliance, resignation, or shrugging our shoulders and saying, “I don’t care.” When we surrender, we step into active partnership with life.

Faith, an elegant and stunning lady with long, silvery hair, tells a story about looking in the mirror one day and feeling shocked at how old she looked. Suddenly, she felt grateful because at least her husband didn°t have to watch her getting wrinkled and old. She says his illness had spared him and her ego that. Then Faith says it’s likely Al would have seen her through eyes of unconditional love too.

Claudia talks about her lingering sadness over her brother’s death. “My brother recently died too,” another woman in the group says. She looks at Claudia and me, then starts crying. “My only question is when does this stop?” she says. She is pointing to the tears on her cheeks.

“I’m not dealing with Alzheimer’s, but l know about loss,” l said. “lt’s been fifteen years since my son died, and the waves of grief haven’t stopped yet. lt gets easier, though. And maybe the waves aren’t all bad.”

l was watching a movie, and in it a little boy referred to scars on our body as “zippers” because of the way scars resemble zigzag zipper lines on the skin. Maybe the scars from losing someone we love are like zippers on our hearts. We can`t stay open and crying all the time. That would hurt too much, and we wouldn’t get anything else done. So we shut off the pain. But these emotional zippers keep us from closing our hearts too much or too long. The waves of grief keep us open. They let other people in and let our feelings out.

* * *

Five million people in the United States suffer from Alzheimer’s. Without a cure, this number will increase to 16 million by 2050.

At age 60, 1 in every 10,000 people develop AD.

By age 85, 1 in every 5 people are demented (most from AD).

Worldwide, the population of people 60 years and older will double over the next 50 years, and for the first time in history, the elderly will outnumber the young.

More than 50 million Americans are caring for a chronically ill, aged, or disabled loved one.

Sources: Institute for Neurodegenerative Diseases and National Family Caregivers Association.

* * *

Activities

1. Write your memoirs. You don’t have to wait until you`re old. Make this an ongoing project. Start while you’re young. Write about events in your life that are funny or sad – the events that have meaning for you. You’re not writing this for publication; write it for your family and yourself.  You can include pictures too – anything you want. Start taking a walk down memory lane now. lt’s a kind thing to do for yourself and for following generations. My mother undertook this project when she was seventy-five. It’s hard for her to remember many events from her life now, but she has everything that was important written in her book.

2. Does someone you love have Alzheimer’s? Do you know someone who has a spouse or relative with AD? You don°t have to go through it alone. Contact the Alzheimer’s Disease Education and Referral Center at www.alzheimers.org or 800-438-4380; the Alzheimer’s Association at www.alz.org or 800-272-3900; or the Alzheimer’s Foundation of America at www.alzfdn.org or 866-232-8484. For support for caregivers, contact the above numbers or the National Family Caregivers Association at www.thefamilycaregiver.org or 800-896-3650.

3. Could you use some group support for whatever problem you’re experiencing? Look in the yellow pages, call your county hospital, or search on the Internet. Support groups are easy to find, and many are free or low cost. You don’t have to do it – whatever it is — alone.

4. Buy your favorite comedy movies. Watch them over and over. Hang out with friends who have a sense of humor, and develop your own sense  of humor too. After my son died, my daughter’s teachers were discussing her behavior with me at a school conference. “How can she be grieving?” one teacher asked. “We see her laughing in the hallways. It doesn’t look like she’s sad.” I had to explain that being in grief doesn’t mean that people cry all the time. It’s important to find humor wherever and whenever we can. Look for the lighter side of life.

5. Don’t ingest aluminum. While the Alzheimer’s Association and medical science has not documented any clear role for aluminum causing or contributing to Alzheimer’s, many holistic and alternative medicine practitioners believe there may be a connection. Holistic sources suggest that aluminum can easily be avoided by not using deodorants and antiperspirants containing aluminum (health-food stores contain many effective and beautifully scented alternative choices); not cooking in aluminum cookware or cracked nonstick cookware; not using antacids containing aluminum (Tums and Rolaids are pure calcium and contain no aluminum). Aluminum absorbed from any of those four sources has no dietary or nutritional benefit and won’t be missed. Why take a chance?