Helping the Helpers Caregivers for people with Alzheimer’s may discover some measure of solace by understanding the illness

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When a woman’s husband of 60 years tells her the same story she has heard over and over and over again, she gets frustrated. When a man’s wife rejects the teddy bear he gives her for their wedding anniversary, tears well in his eyes. And, for one daughter, whose mother never asks her anything about her life, there is a sense of being ignored.

These stories were told recently during a discussion series held in Dexter for caregivers living with or caring for a person with Alzheimer’s disease, the progressive brain disorder that gradually destroys memory, reason, communication skills and daily habits. More than 4.5 million Americans, an estimated 30,000 in Maine, have Alzheimer’s, according to the Alzheimer’s Association, the largest voluntary health organization dedicated to finding prevention methods, treatments and an eventual cure for the disease.

The focus of these occasional statewide discussion and education groups, which are organized by the Maine Chapter of the national association, is primarily caretakers of those with Alzheimer’s. They may include a speaker or film about various issues such as estate planning and memory loss. In addition to the ongoing discussion series, more than 40 additional support groups meet on a monthly basis throughout the state.

Alzheimer’s, which is the most common form of dementia, is particularly challenging for caregivers, 70 percent of whom keep their loved ones at home. As Alzhiemer’s progresses, changes in personality and behavior can greatly challenge the quality of life and well-being of caretakers.

“At every group, I meet wonderful, wonderful people who have given of themselves heart and soul to care for people they love,” said Liz Weaver, program director at the Portland office of the Maine Chapter. “They tend to go a long time without asking for help. Our goal is to reach them earlier in their journey so it doesn’t become a detriment to their health. All caregiving is difficult. It’s all stressful. But the national research suggests and my research supports that for people living with Alzheimer’s it’s even tougher.”

The difficulty can be greatly reduced, said Weaver, by understanding the disease and its symptoms, by learning techniques for validation and communication, and by reaching out to others whose similar stories and situations offer solace.

Barbara Haines runs the discussion group in Dexter and is a volunteer at a local nursing home, where she has a relative with Alzheimer’s. In recent years, she started attending support groups in Gorham and, with a background in counseling, decided to launch one in Dexter about a year ago.

“I really found the support group to be helpful and life-saving, especially for caregivers at home,” said Haines. “Because we have a nursing home here, I know people who are struggling. Up in this part of the state, people are more private with their personal things. I thought it would be good to talk about this.”

A similar group started more than a year ago in Millinocket; 25 people showed up at the first meeting.

At each late afternoon meeting, which lasts 90 minutes, the moderator – in Dexter, that’s Haines – reminds participants that they are there to support one another, to learn and to share stories in a caring and understanding environment. Every person has the right to remain silent, and all information shared is confidential. Tears are accepted. Laughter is encouraged. Age, class, religion and politics fade away as members connect through their loved ones, some of whom are in nursing homes, others in assisted living centers and many more in home settings.

One man revealed that for four years he took care of his wife alone in their small home. She stole from him, ran away, threw out plates and silverware. “Because of the disease, none of this is willful,” explained Weaver. “It’s the disease process at work.” As with many spouses, the man stood by his wife, feeding her, bathing and dressing her, and carrying her when she couldn’t walk. Then, when she had an incident that landed her in the hospital, staffers there suggested he consider placing her in a nursing home. In his 80s, the man knew his own health was in jeopardy. With much anguish, he took the advice. Now he visits his wife every day in the nursing home. Some days she wants to see him, other days she doesn’t know him. Sometimes she asks if he will take her home.

“I have learned the hard way not to argue with her about going home,” said the man, who, like everyone in the group, asked not to be identified. “It only makes her agitated and angry. I don’t blame her a bit. I blame the disease, but it still hurts.”

It’s likely, said Weaver, that the man’s wife might not be asking to be taken to their home but to her own childhood home. Asking for “home” is a familiar request from people with Alzheimer’s, said Weaver, and it’s important to follow their train of thought. A caregiver might ask: Where is home? What was your favorite home? What did you do at home? Or, if someone with Alzheimer’s expresses anger at not being able to drive, following up with a question such as “What was your favorite car?” or “Didn’t you used to have a Buick? What did you like about it?” can distract the person from his or her distress and lead to better communication along more manageable lines. For many, these techniques help defuse arguments that are potentially wrenching for both parties.

Learning how to walk in the shoes of the person with the disease can at least allow an exchange of information, said Weaver. Finding ways to accentuate the positive takes understanding, acceptance and practice.

“You’ve got to be where they are,” affirmed Haines. “If they’re 20, let them be 20. If they are 5, let them be 5. It takes a long time to adapt to that, but it can be less stressful for everyone.”

Weaver put it another way: “If someone is a diabetic, you don’t feed them concentrated sugar. If someone has a dementing illness, you don’t feed them logic.”

But there are strategies for encouraging loving interaction.

“Every once in a while, a window seems open,” said one person in the group. “They come out with something you can understand. And then the window closes right up again.”

“I think the windows are always there,” said Weaver. “I’ve seen them there right up to the moment of death. If you stay open to the moment, if you know the person’s life story and can evoke those things, you can still connect. There’s still a capacity for joy. ”

Weaver told the story of her friend who re-learned German lullabies that her mother had sung to her as a child. She would sing them during visits. Others in the group said their loved ones always lit up when they heard music from their childhood or saw photos of their parents and family homes or tasted cookies made from an old family recipe.

Each bit of information shared was met with nods of agreement and understanding.

“As a caregiver, you can feel very alone in what you’re seeing and living with,” said Weaver. “It’s lonely. And it gets lonelier and lonelier. It can be validating to hear from people who are also living with the same things. I don’t think anything beats that. That’s the essence of support groups no matter what the issue is.”

Alzheimer’s, which was first identified 100 years ago, has no known single cause and no cure, even though new treatments are helping to slow symptoms in some patients. Depending on the severity and other health considerations, a person with Alzheimer’s disease will live an average of eight years and as many as 20 from the onset of symptoms. Most of what is known about the disease has been discovered in the last 15 years, but unless a cure is found, the number of people with Alzhiemer’s will increase 70 percent, to 7 million, by 2025, according to the Alzheimer’s Association.

The numbers for caretakers are, obviously, even greater. Finding support is the first step to managing one’s own life and giving good care to loved ones, say specialists.

The man who stood by his wife before placing her in a nursing home said the support groups and discussions series saved his life. His struggle is ongoing, but he takes comfort in knowing his wife is safe. “I did what I had to do,” he said. “I did it for her, and I did it out of love.”

Alicia Anstead can be reached at 990-8266 and aanstead@bangordailynews.net.

Alzheimer’s help near you

The Maine Chapter of the Alzheimer’s Association holds conversation series throughout the state for caregivers who live or care for people with memory loss and dementia. Topics include discussions about the art of validation, partnering with doctors, placing loved ones in care facilities and navigating legal and financial issues. Series are currently under way in Dexter and Bridgton. More than 40 support groups meet once a week throughout the state, with meetings in Penobscot, Hancock, Knox, Aroostook, Waldo, Franklin and Piscataquis counties. If you need help finding a discussion group or education program near you, call 1-800-660-2871 or visit www.mainealz.org, which lists information about all meetings as well as a local contact number. If you are interested in leading a group in your area, the chapter provides free training and ongoing mentoring. Use the same phone number for information. The chapter is particularly interested in establishing groups in Washington County.

Help 24-7

The Alzheimer’s Association Helpline provides reliable guidance and information to all those who need it. The phone contact serves family and professional caregivers, clergy, law enforcement personnel, students and the general public. The staff can help with understanding of such issues as memory loss, dementia and Alzheimer’s, medications and treatment options, general information about aging, crisis assistance, and skills to provide quality care and legal, financial and living-arrangement decisions. The Helpline is confidential and multilingual. Call 24 hours a day, seven days a week 1-800-660-2871.

10 ways to maintain your brain

. Head first: Good health starts with your brain. It’s one of the most vital body organs, and it needs care and maintenance.

. Take brain health to heart: What’s good for the heart is good for the brain. Do something every day to prevent heart disease, high blood pressure, diabetes and stroke – all of which can increase your risk of Alzheimer’s.

. Your numbers count: Keep your body weight, blood pressure, cholesterol and blood sugar levels within recommended ranges.

. Feed your brain: Eat less fat and more antioxidant-rich foods.

. Work your body: Physical exercise keeps the blood flowing and may encourage new brain cells. Do what you can – such as walking 30 minutes a day – to keep both body and mind active.

. Jog your mind: Keeping your brain active and engaged increases its vitality and builds reserves of brain cells and connections. Read, write, play games, learn new things, do crossword puzzles.

. Connect with others: Leisure activities that combine physical, mental and social elements may be most likely to prevent dementia. Be social, converse, volunteer, join a club or take a class.

. Heads up! Protect your brain: Take precautions against head injuries. Use your car seat belts; unclutter your house to avoid falls; and wear a helmet when cycling or inline skating.

. Use your head: Avoid unhealthy habits. Don’t smoke, drink excessive alcohol or use street drugs.

. Think ahead – start today! You can do something today to protect your tomorrow.

Source: The Alzheimer’s Association. For more information, visit www.alz.org.

10 activities to do with people who have Alzheimer’s disease

. Cut coupons

. Sing favorite hymns

. Read the daily paper out

loud

. Look at family photographs

. Have a spelling bee

. Cut out pictures from

magazines

. Say “tell me more” when they start talking

. Reminisce about the first day of school

. Look through catalogs

. Watch “The Sound of Music”