Remembering Alzheimer’s

Last year, we published a letter that struck a nerve in our community. A young girl, Courteney Bergen of Guilderland, wrote us about her family’s decision to keep her grandfather at home.

“My grandpa is 87,” she wrote, “and has had Alzheimer’s for eight years. He is in the advanced stage, which means he doesn’t have much time left. That is very painful for me to say....”

Courteney wrote with sincerity and regret about the way the disease had changed her grandfather. “Sometimes I would say, ‘I love you’ to my grandpa, but then wouldn’t hear it back,” she wrote. “If there was no such thing as Alzheimer’s, my grandpa would be able to say, ‘I love you’ back.”

Courteney wrote, though, that the most “shocking part” is 70 percent of people diagnosed with Alzheimer’s live in nursing homes.  “I don’t understand how you could leave your loved one in there,” she wrote. “It is like a jail with no escape out. If your parents took great care of you, return the favor, please.”

We received many calls and letters in response.  Tracy Bennett wrote that she was upset to read “leaving someone in a nursing home isn’t OK.”

“Some people,” wrote Bennett, “do not have the necessary means that needs to take place when the person we are caring for needs a mechanical lift or a Sarita lift to get out of bed.”

She also recalled how, when she was 6, her “grandpa’s health was failing and he was in a nursing home.” Her family made daily visits to the home and she recalled sitting on her grandfather’s lap and riding with him in his wheelchair up and down the halls.

“I am still proud to say,” wrote Bennett, “that the nursing home gave Grandpa everything he wanted and more. There was always staff there with a helping hand and an open heart.”

We also received a moving letter from Susan St. Amour who wrote thoughtfully — with brutal honesty but not a trace of bitterness — about how dementia had robbed her husband bit by bit of his identity.  A music teacher for 34 years, he could no longer read music; he could no longer recognize his wife. He lost the ability to understand language and became isolated.

“I was having to do more for him — bathing him, dressing him,” she wrote. “It was difficult because of his strength in resistance and his sheer physical weight.”

A health crisis sent him to the hospital where the staff “saw immediately that home care would not be possible” and he was transferred to Daughters of Sarah nursing home.

“They placed him in a hallway during the day where he could be greeted and gently patted and caressed by passersby,” wrote St. Amour. “Sometimes they placed him in a room where there was the smell of lavender and a rose light, along with a kind of gentle droning sound — they said it helped him feel more peaceful.

“His care there was thoughtfully provided and greatly exceeded any care we might have given him at home. We were most grateful for it.”

These heartfelt letters have haunted us for the better part of a year. There are no right answers. Families need to do what is right for them. We, as part of a community, need to support the course that is taken.

Alzheimer’s is a disease that was unheard of a century ago but now afflicts 5.3 million Americans and is the country’s seventh leading cause of death. There is no cure.

The Alzheimer’s Association, the largest private, not-for-profit funding organization of Alzheimer’s research, tells the story of the discovery of the disease this way:

Dr. Alois Alzheimer, a German doctor, wrote in 1910 about a woman, Frau Auguste D., who had become his patient in 1901 when she was 51 and had memory lapses, an unfounded belief her husband was unfaithful, and had trouble communicating. She deteriorated rapidly, and died in 1906. An autopsy showed dramatic shrinkage of her brain, particularly of the cortex, the outer layer involved in memory, thinking, judgment, and speech. The microscope showed widespread fatty deposits in small blood vessels, dead brain cells, and abnormal deposits in and around the cells.

Today, scientists write about plaques — build-up between nerve cells with deposits of protein fragments — and about tangles — formed inside dying brain cells.

The problem belongs to all of us. Here in Albany County, the Alzheimer’s Association of Northeastern New York served over 10,000 people last year.

 And, according to the national association, Alzheimer’s and dementia triple health-care costs for Americans who are 65 and older; the direct and indirect costs to Medicare, Medicaid and businesses amount to more than $148 billion each year.

 But, as staggering as those costs are, the toll in human suffering may be greater.

Research has explored and recorded the toll that caring at home for Alzheimer’s patients takes on the caregivers. The Journal of Immunology in 2007 published an article on the physical toll. Researchers found that Alzheimer’s caregivers had shorter telomeres — the genetic material at the end of chromosomes that promote error-free cell division — than noncaregivers. While shortening is a natural part of aging, the caregivers’ telomeres were shortened as much as someone four to eight years older. And, the Alzheimer’s caregivers also had fewer immune system T cells and more inflammation-promoting proteins.

Also in 2007, Geriatric Psychiatry published an article describing a study that showed extra counseling and support for Alzheimer’s caregivers led to better physical health for them.

We’ve published several columns and news items over the last year on the worthwhile work done by the Community Caregivers, based in Guilderland — holding seminars on Alzheimer’s and providing relief for caregivers. We continue to commend this not-for-profit group that harnesses the talents and time of volunteers to help those in need.

We again urge support for the Community Caregivers, which covers the same area we do. Contributing your time and talents or your money strengthens our community, and also increases the likelihood care may be there when you or someone you love needs it.

Many families have made the difficult decision to put an Alzheimer’s patient into a nursing home or assisted living facility. As a society, we need to be vigilant about the care that such facilities provide. The example cited by Susan St. Amour of the loving care provided locally by Daughters of Sarah shows that such a facility can be the right choice.

We’ve highlighted this week a program new to our town called Life Guidance at Atria Guilderland. It’s the second such program in Albany County and the 59th in the nation. We’d like to see such programs available to patients, regardless of wealth.

The Life Guidance program appears to follow the recommendations made by the Alzheimer’s Association for assisted living residences and nursing homes. Peter Reed, Ph.D., senior director of programs for the association, summarized those recommendations posted at the association’s website this way: “Underlying the...recommendations is a person-centered approach to dementia care, which involves tailoring care to the abilities and changing needs of each resident.”

Life Guidance workers are trained to get to know patients intimately and the program is designed to allow individual choice as much as possible.

“It’s the little things that count, and that’s what we strive for,” David Troxel, a consultant for Life Guidance, told our reporter, Anne Hayden. She noticed some of those “little things” like distinctive hats on each bedroom door so residents could have a way, besides a number, to recognize their rooms.

Troxel also said that, when he started his work 25 years ago, many people didn’t know what Alzheimer’s was. But now he has a hard time finding anyone who hasn’t had a family member or friend affected by the disease.

As the number of afflicted grows with the aging of the baby boomers, we need to help our friends and neighbors by supporting them in the choices they have made.

Courteney Bergen, our intrepid young letter-writer, told about the different reactions her family got when they took her grandfather out, in his wheelchair, to eat. “Some people would compliment how kind our family was for taking care of my grandpa,” she wrote, “but some people would give us dirty looks and talk among themselves, obviously about my grandpa.”

Let’s build the kind of community that accepts and embraces the needy in our midst. The little things do count.

— Melissa Hale-Spencer, editor