How to Get Training as an Unpaid Dementia Caregiver...

Whether in person or online, you can find helpful instruction The Best Friends Dementia Bill of Rights states that people with Alzheimer’s or other dementia deserve to have care partners well trained in dementia care. Yet the vast majority of these individuals are cared for in a private residence by untrained and unpaid family members. Although these family members have the best intentions, they may not realize they are up against possibly the most complex caregiving situation imaginable. To say the least, it’s emotionally, physically and financially draining. Yet they attempt to juggle this added responsibility while still maintaining a career, family and social life — all of this without adequate training. Self-Education and Community Help The only way to survive is through ongoing self-education to aid in the “on the job training.” But even when we learn on the job, someone is typically there to guide us. Family members must find educational solutions that work for them, so that means trying different approaches to find the one that works for their unique situation. Contact the big dogs — the Alzheimer’s Foundation and the Alzheimer’s Association — and get registered to receive important information about training opportunities they may offer. Each has unique strengths and weaknesses when it comes to training. Contact local memory-care facilities in your area, too. They often have training classes for professionals and unpaid caregivers. Also, inquire about support groups; when you attend a support group, you get some of the best training possible as you learn from others who are ahead of you in this journey. Lack of Time? Go Online For some people, however, attending these classes in person adds yet another level of complexity to an already overwhelming schedule. The classes are...

At 65, I Still Want to Have It All...

Why work/life balance isn’t just for young people Anne-Marie Slaughter, whose July 2012 Atlantic magazine piece, Why Women Still Can’t Have It All,  ricocheted around social media, just wrote a buzzy New York Times piece (A Toxic Work World) on how innovation around work and caregiving would be good for women, men and business. Taking a page from her new book, Unfinished Business: Women Men Work Family, she wrote: “The problem is with the workplace, or more precisely, with a workplace designed for the Mad Men  era, for Leave It to Beaver families in which one partner does all the work of earning an income and the other partner does all the work of turning that income into care — the care that is indispensable for our children, our sick and disabled, our elderly.” Work/Life Balance for All Ages That divide between working and caring Slaughter highlights is, I believe, plaguing the way employers approach the need for work/life balance for people at all life stages. According to our latest research at Encore.org, people at the tail end of the career path need work/life balance, too. Like younger families, they also need to balance caregiving with work or volunteering outside of the family. But in this case, the caregiving is about elder care and a commitment to grandchildren. When the places they want to work, however, are only keen to hire and keep people who can work full-time, year-round, they turn away an incredibly valuable resource. My Work/Life Needs at 65 What a difference a little more creativity in how we fashion work could make. Case in point: I’m a white 65-year-old man and a living example of the need to balance work and family. A few years ago,...

What Japan Can Teach Us About Long-Term Care...

Here’s a sobering calculation: The odds that Americans turning 65 today will eventually need assistance with bathing, dressing and other personal activities are about 50/50. And those who’ll need long-term care can expect to incur costs of $138,000, on average, estimate Melissa Favreault of the Urban Institute and Judith Dey of the U.S. Department of Health and Human Services. Yet people age 55 to 64 with retirement savings accounts have a median balance of $104,000 in them, according to the National Institute on Retirement Security, a nonprofit based in Washington, D.C. See the problem? America’s Broken Long-Term Care System Sad to say, America’s system for financing long-term care is badly broken. If we take a few ideas from Japan, though, we could help avoid a long-term care catastrophe. Japan has the highest proportion of people 65+ in the world. And 20 years ago, its long-term care approach looked much like the current failed U.S. system. But Japan took a few key initiatives in 2000 that are widely admired among long-term care policy experts. Before I explain what they did, first let me offer a brief look at the U.S. situation. Long-Term Care Financing in the U.S. America’s private long-term care insurance market is contracting and its policies are expensive. Only about a dozen companies now sell coverage, compared with about 100 more than a decade ago, according to Marc Cohen, chief research and development officer at LifePlans, a firm that helps health- and long-term care insurers manage risk. Tom McInerney, chief executive officer at Genworth, the nation’s largest long-term care insurer, estimates that between half and two-thirds of Americans can’t afford to buy in the traditional long-term care insurance market. A 60-year-old married couple would pay $3,930 per year, on...

Why I Became a Care Coordinator for My Mom...

This woman’s experience led her to help others in a similar predicament I didn’t have a care coordination provider in 2009 when my daughter and I started caring for my mom, Margaret. It was difficult. I was working; my daughter was in college. There may have been something called “care coordination,” but at that time, many of the care coordination services were in early stages of development or new. I did have lists of caregiving services and phone numbers for my mom, as well as financial statements and housing options. My challenge was taking a fragmented health care system and organizing it into something cohesive to serve her. Known as care coordination, this process is usually tackled by a team of health care professionals working together and sharing information to provide the best care possible at the appropriate time to, in this case, an older adult. The team then monitors and reports to the family on all aspects of the loved one’s care, including medical and physical condition and outside activities. Advantages of Care Coordination Care coordination frequently reduces cost through better, more efficient use of health care services. It also improves quality of life for families and older adults. Care coordination is a good choice for older adults who want to age in place, because services are brought in to the patient. In addition, receiving these services at home is less expensive than living in a nursing home, costing approximately $1,000, compared with more than $5,000 a month at a nursing home. In my mother’s case, I was her care coordinator. I learned as I went. I made mistakes. I got better. I was like most caregivers in the United States: a full 72 percent of us provide...

Recrafting a Life After a Stroke...

A survivor and his wife offer advice for coping   At 71, Bob Seiter was an active guy. After retiring from Kaiser Aluminum, where he worked in sales, he played golf three times a week, playing at a 14 handicap and striving to regain his 4. When he wasn’t on the fairway, he spent a lot of time volunteering. Then one morning, he had a hemorrhagic stroke, and everything changed. His wife, Sue, found him in the garage, alarmingly disoriented, called 911 and prayed. Bob was rushed to the hospital, where he spent three weeks in intensive care, clinging to life. The doctors warned Sue that Bob wasn’t expected to make it. But one day he opened his eyes and awareness began, slowly, to return. Coming Back to a New Life Then came 5 1/2 grueling weeks in a rehab facility. Then came reality. Bob recovered from the acute phase of the brain trauma, but he may never get back to normal. He doesn’t have some of the cognitive capabilities he used to have. He can’t, for example, immediately recall numbers, such as age or quantity. Ask him his own age, and he can’t answer until he first counts 40, 50, 60, 70, 71, 72, 73. His short-term memory is poor. He might forget where the TV remote is, whether he turned off the stove or where the newspaper he’s reading is. (He can’t manage reading a book yet.) He still has trouble to recalling specific words or places, such as the cities where his children and grandchildren live. “I’ve had to recraft myself,” he said. “And that means learning how to do basic things again — and accepting that I’ll never be able to do some things I...

How to Create Meaning in Dementia Care...

One of the most important things to a caregiver of someone with Alzheimer’s is to know their loved one is happy. However, they are often so overwhelmed by the responsibility of caregiving, that the fun of being together is lost. All engagement tends to be for survival and not for enrichment. This often results in a negative atmosphere affecting the mood of everyone, including the person with Alzheimer’s. Left unchecked, the resulting tensions will often lead to behavioral issues from both individuals. Slipping Away Unsure how to even act around each other, the care partners (the person with Alzheimer’s and his or her caregiver) may fall into a world of isolation. They may worry about what others think or feel their situation is unlike others’. They can become so uncomfortable that they may withdraw from family, friends and society. Changing these tendencies is important to the health and well-being of both individuals because meaningful human interaction, whether in a one-on-one situation or in a group setting, is important to everyone’s happiness. Finding Happiness With Alzheimer’s disease, it’s important that engagement is adapted to meet the changing needs of the individual while focusing on the things that enrich the person’s life and bring happiness. For this to work, the caregiver must accept how things are now and discover ways to incorporate meaningful activities on daily basis. While a caregiver will routinely look back at how things were, it’s vital to appreciate that the person with Alzheimer’s is the same person as in the past. It’s the disease that’s making the individual act different, and typically, the same things will still bring happiness to his or her heart. These men and women still want to be included in activities and to...

How to Help Mom and Dad Move to a New Home...

Here are five tips to make the transition less traumatic for your parents For most people, moving from one home to another is exhausting. Even when we get help with packing and transporting our possessions, moving means changing countless aspects of our everyday lives — from making a new place for the silverware to potentially finding new friends. And it can mean saying goodbye to memories we’ve made over the course of years. Older adults often have a much harder time with the transition. For your parents, moving can go from merely taxing to highly traumatic. That’s when it becomes transfer trauma, also known more broadly as relocation stress syndrome. “You’re literally transitioning to a completely different phase of life, to a completely different environment,” says Tach Branch-Dogans, president and CEO of Moving Memories and Mementos of Dallas, Texas, who spoke at the Aging in America 2015 [www.asaging.org/aia] conference of the American Society on Aging [www.asaging.org] I just attended. That’s true whether a person is voluntarily downsizing or being moved into a nursing home, she says. Symptoms of Transfer Trauma Moving can result in a host of physical and psychological changes, including loss of sleep, agitation, depression, withdrawal, short-term memory loss, irritable bowel syndrome, loss of appetite and nausea, Branch-Dogans says. Tracy Greene Mintz, a Licensed Clinical Social Worker in Redondo Beach, Calif., who has worked and lectured extensively in the area of relocation stress syndrome, says loss of control is at the core of transfer trauma. “This week you’re going to be at home living independently; next week you’re going to be in assisted living. The abruptness with which we move older people … is very damaging psychosocially and emotionally because it strips the older adult of control,”...

Why and When Denial Is Good For Caregivers...

Temporarily ignoring a problem might make it easier to manage The ever-witty author Delia Ephron recently wowed a mostly female boomer audience at the Motion Picture & Television Fund’s Women’s Conference making the crowd laugh with spot-on stories about skipping cab rides to afford a blowout for her unruly hair and wondering why kale is the new wonder food. But the mood turned more somber as she spoke of her late sister, the noted author, screenwriter and film director, Nora Ephron. The two were extremely close, not just as sisters but also as writing partners for films such as When Harry Met Sally and Hanging Up. “When Nora became ill, she told very few people,” Ephron said to the hushed crowd. Her sister didn’t want a flood of sympathy for her losing battle with leukemia or to spend her last months entertaining the mourners — those who come to dwell on your soon-to-be exit. Delia became part of a small circle who cared for Nora, emotionally if not physically, in the last months of her life. Part of that caregiving role was to keep her sister’s diagnosis under wraps. Even though Delia knew the truth, she found herself embracing the canard. Some days, she was able to forget Nora was ill. When Denial Is Healthy When caring for an older parent, ailing spouse or sibling struggling with a devastating diagnosis, denial is often a place caregivers dwell. They may be driven there because they feel overwhelmed or angry, or because they don’t understand “medical speak” and want to tune out. And while an initial state of denial is neither uncommon nor unhealthy, according to Dr. Ira Byock, a leading palliative care physician and author of Dying Well, it’s not...