Living with Alzheimer's

Most of what we know about people living with Alzheimer’s is grim. Media reports show helpless individuals and their caregivers who can barely cope, all of them miserable and isolated. However, according to an Alzheimer’s Disease International survey, most of those suffering with mild to moderate AD still can enjoy life.

Most of the respondents with Alzheimer’s said they enjoyed warm relationships with their caregivers and felt safe and supported at home. More than 80 percent said they continued to “keep a social life with their family and friends” and felt “well-respected by family members.”

The survey didn’t ignore the difficulties of living with someone with Alzheimer’s. A majority of caregivers said, “caring for someone with Alzheimer’s is burdensome.” Nevertheless, over 70 percent reported that taking care of someone with AD helped them “appreciate what’s really important in life, that it’s a way of repaying some of the love and care they received in the past and more than one-half called the work “rewarding.”

Bioethicist Nancy Dubler is believed to be the first person to propose a Bill of Rights for Alzheimer’s patients and their families. Here are the principles many have adapted and modified.

As someone living with Alzheimer’s, you have the right to:

• The most thorough and accurate diagnosis and treatment available;
• Be informed about your diagnosis and the results of all tests;
• Start treatment before losing additional functions and receive appropriate, ongoing medical care;
• Participate as long as possible in decisions about your present and future, including where you live and who provides your care;
• Be productive in work and play as long as possible;
• To be treated as an adult, not a child;
• Express your feelings and be taken seriously;
• Live in a safe, structured and predictable environment;
• Enjoy meaningful activities each day;
• Exercise appropriately;
• Be out-of-doors regularly;
• Have physical contact;
• Be cared for in proximity to those who know your life story and who respect your cultural and religious traditions; and
• Be cared for by individuals well trained in dementia care.

Alzheimer’s isn’t your entire life.

Caregiving involves enormous responsibilities, daily challenges and a seemingly endless number of small duties and tasks that can wear down even the most patient of providers. If all you do is deal with AD, you’re more likely to become isolated, stressed and depressed. I saw that happening with my father.

Don’t let caregiving consume all your time. According to mental health experts you should:

• Interact and socialize with other people. Go to a meeting or class outside your home. When you’re at home, spend time with your grandchildren or talk on the phone.
• Do something that gives you a sense of accomplishment. Cook or bake one of your favorite recipes. Choose a project and finish it. Set an exercise goal, such as getting in shape to run a race, and work to meet it. Help someone accomplish something.
• Do at least one thing you enjoy. For my father, it was golf. Watch a movie, take a walk, sing and dance along to your favorite CD or take up gardening.

Alzheimer’s sufferers need people. They also need predictability and quiet. The following strategies may help you meet those needs.

• Eat in. Restaurants are loud, distracting and confusing to many people with Alzheimer’s. Order from a favorite restaurant and enjoy the meal at home.
• Visit at the time of day that’s best for your loved one.
• Visit alone or with another person when possible. People with Alzheimer’s do better one-on-one.
• Even if you’re there to lift their spirits, try to be calm and quiet. When you arrive, try to establish eye contact. Call them by their name and remind them who you are. They may or may not recognize you when you get there.
• Keep the conversation simple and in the present. If we haven’t seen someone in a while, it’s normal to ask about what’s happened since, such as “How was your weekend?” or “Did you get to see David when he was in town?” Try to remember that questions like these can be taxing for someone with memory problems. They might feel like it’s a challenge or test.
• Avoid speaking loudly or as if you were talking to a child.
• Conversation is harder on some days than others. Consider bringing along some photos, a video or even a game you can share in case they’re not particularly talkative when you’re there. You may not want or need it but you may be glad and relieved to have it on hand.

To someone with Alzheimer’s, the world grows increasingly less familiar and more fraught with uncertainties. I remember standing with my mother in her kitchen when she said, “I have no idea where I am.”

Do your best to maintain an environment that feels familiar, comfortable and safe for your loved one. Concentrate on routines and plan their schedule so it includes activities they know and enjoy. If he’s a sports fan, be sure to turn on the game. If she’s a lifelong churchgoer, take her to a service.

Routines are essential. If possible, schedule activities at the same time every day to enhance your loved one’s sense of stability. Be cautious in planning activities that might demand skills and abilities that they’ve lost. Be aware of physical limitations, such as spatial orientation or coordination, and whether they can start an activity on their own. Alzheimer’s can be unpredictable and demanding. Planning a schedule frees you from trying to figure out what to do from one moment to the next.

If your loved one responds well to an activity, do it repeatedly. Research studies show that the following activities are therapeutic for those with Alzheimer’s and may reduce problem behavior.

• Playing music your loved one enjoys
• Interacting one-on-one
• Playing videotapes of family members
• Walking and gentle exercise and
• Pet therapy

Physical activity can help prevent muscle weakness and health complications that develop in those who are sedentary. Getting exercise encourages a normal day and night routine, which may help boost your loved one’s mood. While exercise won’t stop the progression of Alzheimer’s, it can provide emotional satisfaction and a feeling of accomplishment.

The best activities have a purpose. They let someone with AD know they’re wanted and needed. They also should focus on Every bit of help you can get as an Alzheimer’s caregiver gives you more energy to spend with your loved one.

Caregiving works best if you have a network of family and friends you can depend on for love and support. Check out Lotsa Helping Hands (www.lotsahelpinghands.com). This free online community helps organize family members, friends, neighbors and colleagues in times of need.

Broadband Internet access is an invaluable resource for someone living with Alzheimer’s. It can connect them with family, friends and services that vastly improve their way of life. It offers information and instruction condensed in fact and tip sheets that can help your loved one understand and meet the medical, legal, financial and practical challenges associated with AD.

It’s important, however, to make sure the information is coming from a reliable source. Some websites tout miracle cures without information to back up their claim.

According to Susannah Fox of Pew Internet and American Life Project, “The sheer volume of health information online—and its wildly uneven quality—makes sorting the wheat from chaff difficult. Most e-patients start with search engines, like Google or Yahoo, which turn up thousands of websites, ranked according to the appearance of keywords. This doesn’t necessarily lead to reliable information.”

To distinguish science from pseudoscience and snake oil, follow these suggestions, adapted from the Medical Library Association and MayoClinic.com guidelines, which can help you get to the most accurate, comprehensive and user-friendly health sites.

• Consider the source. Who sponsors the site and produces its material? Is it a government health agency site (.gov), an association or nonprofit (.org) or someone with a blog and strong opinions about Alzheimer’s care and treatment? Click the “About” or “About Us” links on the homepage to find out the site’s sponsor. Websites created by major medical centers, universities and government agencies are the most credible.
• Is the site trying to sell you something? Some dot-com sites support excellent content but they also may come with advertising, which may be posted by a reputable health care provider. If the site features content about that advertiser, watch out. Stay away from sites that don’t clearly distinguish between factual evidence and advertisements. Also be wary of commercial sites or personal testimonials that promote a single, simple solution or incredible cure.
• When was the page last updated? Check the bottom of the page. This is particularly important as new health and science studies and evidence emerges that can contradict what a site published the previous year. Pay attention to whether articles are updated, too.

Communicating with Alzheimer’s

In the middle stages of Alzheimer’s, many individuals withdraw from their family, friends and social activities. A family get-together or class reunion your father may have loved a year or two earlier now is bewildering and distressing. He can’t remember names, the word for the vehicle he arrived in or the outer garment he checked at the restaurant. While he recognizes old friends and remembers the wonderful times they had together, he can’t follow what they’re saying. To make matters worse, he’s confounded by the sequence of courses at dinner.

Normally, gregarious people may withdraw at this stage because they’re losing their ability to grasp what people around them are saying. According to Coach Frank Broyles, “It’s getting harder for him to shut out noises around him. He can’t focus on what’s being said.” He suggests limiting the number of people your loved one interacts with in social situations and at home. “Have guests talk with him away from the crowd and the noise. If he gets upset, move to a quiet area with him until he calms down.”

Joanne Koenig Coste, author of Learning to Speak Alzheimer’s, maintains that “people with Alzheimer’s stop speaking not because they lose their ability to understand and communicate but because they’re afraid of being wrong.”

People with AD are responding to fear and a “feeling that they’re not worth anything anymore,” she says. “We stop including the person when it seems like they can no longer give us any information that is useful to us. That doesn’t matter. They need to be included. Ask the person what he wants for supper even if you know the answer is going to be ‘Whatever you’re making.’ So what! You’ve included him and made him feel like he’s still worth something.”

Your loved one also may withdraw because the world around them—the one they live in—is no longer familiar. “It makes them very frustrated and logically so,” Coste added. “Wouldn’t it be frustrating to us if somebody was insisting that it’s 2012 when we know it’s 2008? Well, that’s how they feel and that’s why they often stop talking. If they’re going to make a mistake every time they talk, they’re not going to talk.”

When your loved one gets distressed because they can’t communicate, be patient and calm. Stop what you’re doing and really listen to what they’re trying to say. Think about the feelings behind their words. Pay attention to what their body is trying to tell you. If they look upset or angry, then ask them if they are. Above all, treat them with dignity and respect.

Middle to late-stage Alzheimer’s is sometimes called “the long goodbye.” The disease causes volatile emotions and that may lead to mood swings, crying, agitation and outbursts doctors refer to as catastrophic reactions, such as shouting, cursing or even hitting others.

Alzheimer’s sufferers have difficulty comprehending what others say and do and this may spur anger and delusions. As the disease progresses, your loved one may engage in obsessive behavior, such as cleaning one object repeatedly or removing and replacing the contents of a drawer. They may pace, wring their hands or ask the same question over and over.

Contrary to what you may think—and what you may wish—people with Alzheimer’s don’t succumb peacefully to the disease. The final, most debilitating stage of AD can last two to three years. During that time, your loved one will lose awareness of their surroundings and their ability to speak. They may not recognize you or others. They’ll probably lose control of their bladder and bowels; grow dependent on others to help them walk and sit up; and eventually lose their ability to swallow.

Bedridden, your loved one will most likely need round-the-clock, hands-on care. They may develop severe joint pain and stiffness. They’ll be prone to pneumonia, urinary tract infections, dehydration, malnutrition and bedsores.

As the end approaches, Coach Broyles offers this advice. “While your loved one may not know who you are, she still has feelings. Her need for love and touch has never been greater than it is now. She still can feel scared, rejected, lonely or sad. Now is a time to hold her, talk to her, stroke her gently and show your love and support.”

For more information about Alzheimer's visit www.facebook.com/demystifyingalzheimers or go to passionateworldradionetwork.com/mary-yarmin-garone.