Caregiving can mean ‘joining the journey’

Robert E.P. Elmer III is a master trainer in Alzheimer’s care.
Robert E.P. Elmer III is a master trainer in Alzheimer’s care. Dana Jensen/The Day

Americans are living independently longer than in years past. Advances in medicine and technology have made it possible — everything from more effective treatments for disease to devices that remind people to take their medications and sensors to detect if they fall.

As the waiting lists at assisted living facilities grow, many are also relying on home health aides and relatives, which is why Robert E.P. Elmer III travels around Connecticut and Rhode Island to speak with at-home and professional caregivers as the founder of Care For Caregivers LLC.

His goal is to give these caregivers the insight and understanding that improves their quality of life and the quality of life for the person they are caring for.

While Elmer, a master trainer and Alzheimer’s care specialist, often gives lectures for people who are caring for someone with Alzheimer’s disease or dementia, he said many of his tips are applicable to all caregivers: Be respectful and courteous, supportive and compassionate; never talk about the person as if they were not there; and empower the person by engaging them in meaningful activities.

He is a proponent of Virginia Bell’s and David Troxel’s philosophy, the “Best Friends Approach” — treat them as you would treat your best friend.

For those caring for someone with Alzheimer’s or dementia, Elmer tells them to “join the journey.” Attempting to reason with someone who has lost the ability to reason, or to ground them in reality, does not work, he added.

“The number one thing they look to you for is to feel safe,” he said. “There is a lot of confusion going on, and you don’t ‘reality-orient’ them. In other words, if mom or grandma is walking around with a doll, it may be because their brain is taking them back to a place in their life where they had clarity, meaning and purpose. What is more meaningful than being a mother?”

“What you don’t do is go up to them and say, ‘Martha, what are you thinking? You’re 92 years old. Your children are 70. Stop it,’” he added. “What you do is say, ‘Martha, what a beautiful baby. Aren’t you doing a good job? What a wonderful mother.’ Martha goes off with a smile on her face. That’s joining the journey.”

Someone with Alzheimer’s disease may do things that are inappropriate or embarrassing, Elmer said, but it’s important to remember that they can’t help it, the disease is taking control. And if a caregiver talks about them as if they are not there, that person can often sense the emotion of the conversation by reading an expression, tone of voice or body language, Elmer added.

“They weren’t born with this illness,” he said. “These were football players, war veterans, teachers and lawyers, and doctors of philosophy. Many had remarkable lives, and this disease steals a lot of that.”

Alzheimer’s disease is the sixth-leading cause of death in the United States. More than 5 million Americans are living with it. And last year, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion, according to the Alzheimer’s Association.

Lisa Ryan, chairwoman of the Stonington Commission on Aging, said the lectures Elmer gives are important because there are so many people caring for relatives who do not have health care training and do not always know where to look for help.

“It’s probably a godsend to get these tidbits of information,” Ryan said. “I think it makes them feel like they’re not alone.”

Ryan provides case management services to the elderly and their families. She said she tells professional home health aides to learn each new client’s biography so they can appreciate where they were in their life and be an empathetic, effective caregiver. She tells family members they must remember to take care of themselves, too.

“It’s overwhelming and it’s stressful,” Ryan said. “People try to do it all alone, and they don’t want to ask for help. They’re embarrassed. Time and time again I’ve seen the spouse who is well die before the one who has been diagnosed. It’s a hard thing for people to do, but if you take 15 or 20 minutes a day to do something for you, it’s really important.”

Elmer, who is 66, said his work is extremely gratifying, and he will continue working with caregivers for as long as he can. He said he always tells them about the Alzheimer’s Association’s 24-hour helpline, (800) 272-3900.

“The need is there,” Elmer said. “They say 60 is the new 40, but 80 is not the new 60, and there are so many people who need this information.”

j.mcdermott@theday.com

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