A difficult diagnosis: Alzheimer’s

02 12 Zeckhausen Alzheimers Bill DS

William Zeckhausen said that when people ask him how he’s doing, he responds, “It depends on the day.” He and his wife, Barbara, gave a lecture at the Taylor Community on Monday about living with and caring for someone with Alzheimer’s disease. (Adam Drapcho/Laconia Daily Sun)

Local couple shares their experience with disease

By RICK GREEN, LACONIA DAILY SUN

LACONIA — William Zeckhausen, who spent a career counseling and helping others, had a hard time coming to grips with the fact that he would now need support and assistance himself.
Suffering from a disease that would slowly rob him of his talents and his independence, Zeckhausen considered ending his life.
Instead, the 83-year-old ordained minister and pastoral psychotherapist, chose another path. He would be open about having Alzheimer's disease. He would continue to find self worth in helping others for as long as he could.
Zeckhausen and his wife, Barbara, told their story Monday at the Taylor Community, where they reside.
Many residents of that retirement community will be touched by the disease, which has a high prevalence in the elderly and can be particularly hard on families and finances.
The couple met in high school in Manhasset, New York. They were trying out for a Christmas pageant. He won a role as a wise man, and she portrayed an angel.
They have lived in Laconia for nearly 50 years. They sold their home on Lake Winnisquam a couple years ago.

Startling statistics
More than 5.4 million Americans have Alzheimer’s disease, including one in nine people 65 and older and one third of people 85 and older, according to the Alzheimer's Association.
The number of people with the disease is growing as the population ages. In 2015, 47 million people living in the U.S., 15 percent of the population, were 65 or older. By 2060, that number is expected to climb to about 98 million, or nearly one in four U.S. residents.

Last year, total payments for health care, long-term care, and hospice for people with Alzheimer’s and other dementias were estimated to be $259 billion.

Zeckhausen's story
About five years ago, Zeckhausen, started to forget appointments he had made for trumpet lessons or psychotherapy sessions.
He lived for a year in fear that he had the disease.
“I've always been a hypochondriac, but in this case I was right,” he said. “I think anyone would freak out if they thought they were getting Alzheimer's, and would try to hide it, which is the worst thing you can do.
“If you only remember one thing from what I'm saying, if you feel you have it, or if you learn you have it, do not hide it because that makes it worse. And then you're just stuck in your own negative thoughts.
“I was thinking if I ever got it, my life's over and I don't want to hang around because I'm suffering, and I'm scared, and I'm depressed and I can't do anything.”
Cognitive tests confirmed his worst fears.
He thought his life would have no meaning and that he would have no contribution to make. He considered suicide.
“I was so miserable that I decided that I can escape this, I don't want to go on living this way, because it was a nightmare, every freaking day,” he said.
“To decide to get relief by killing yourself makes it worse because you are scared when you wake up. I didn't want to kill myself, but I didn't know what else to do.”

Disease toll
Depression can be expected after an Alzheimer's diagnosis.
The impacts of the disease are so overwhelming that it is hard for the sufferer to cope.
Grief, confusion, frustration, anger, fear and uncertainty are common.
The disease is also hard on family members, particularly those acting as caregivers, or in Zeckhausen's case, his wife, Barbara.
“The first piece of advice I was given as a caregiver was, 'Take care of yourself,'” Barbara Zeckhausen said. “On our first visit, our doctor warned that over 50 percent of caregivers go before the patients.”
“We all know how physically challenging and emotionally draining caregiving can be, so we need to conserve our physical and emotional energy as we can.
“We need to focus on what gives us joy and protect ourselves.”
Supportive caregivers know to deflect rather than to scold or argue, to be patient and to learn to let the little things slide.
When her husband is telling a story and loses his train of thought, rather than taking over the story, she will tell him a word or two to prompt his memory and he will continue, often joking with her about the assist.

Family support
The couple also have two children who have been supportive.
It was William Zeckhausen's love for his family that helped turn around his destructive thoughts.
He shared with his children that he was contemplating ending his life.
“I definitely knew to tell my son and daughter I was going to do that,” he said. “It would be less horrible. If you didn't talk about it, and it's a shock, that would be terrible.”
“They both saved me in a way. I thought my son would argue with me, and he's smarter than I am, and he didn't. He said 'Dad I will support whatever you decide.'
“That was moving.”
He told his daughter he wouldn't want her to be present when he ended his life, because he wouldn't want her subjected to the trauma of it.
“She said, 'Dad, I want to be there.'”
“What that did for me, it communicated deep love. My daughter was very heroic to say that, and I knew she meant it, and I wasn't going to do that to her.”
His spirits were lifted when he visited with a psychiatrist who explained that given the long progression of the disease, there was still plenty of time to continue a meaningful life.

New meaning
Zeckhausen rediscovered some of his previous writings about the problem of suicide among medical professionals.
His dentist placed some of his work online and it received a lot of attention in the medical community.
He also wrote a newspaper article on the subject for the Concord Monitor.
Zeckhausen also “came out” publicly about his Alzheimer's diagnosis, spreading the word that those with the disease can still contribute to society and help others. He wrote letters that were published in newspapers.
His years of work in pastoral psychotherapy put him in an excellent position to work as facilitator in support groups for people with Alzheimer's.
“I want to let people know, who are afraid to talk about it, that not everything about Alzheimer's is negative,” he said. “My goal is to get information out to those who are scared witless.”

New treatments
There is no cure for Alzheimer's disease. Some medications and management strategies may temporarily improve symptoms.
Dr. Jonathan Jackson, a cognitive neuroscientist and instructor of neurology at Massachusetts General Hospital, said one area of research is to fight the disease before it takes hold, in the way people take cholesterol-lowering drugs to ward off cardiac problems.
“We are nearing a make or break point for clinical research,” he said. “The next 12 to 18 months will be crucial as we report out the first wave of the newest generation of drugs, which look to prevent the disease among those without a diagnosis.
“If those trails fail, like many others have failed, we are fortunate that research funding is a bipartisan effort. We are sitting on a gold mine of ideas and promising new therapies.”
There are some indications people can lower their risk for Alzheimer's by lowering the risk for heart disease with a diet emphasizing fresh produce, healthy oils and foods low in saturated fat. It's also encouraged to keep active physically, mentally and socially.
Until there are better medications for Alzheimer's, the onus will be successful management of the disease through its long progression.
The diagnosis can be heartbreaking, but it does allow time for people with the disease to participate in advance planning about their care, completion of living wills and preparing power of attorney documents.

Difficult discussion
Dr. Lyn Lindpaintner, an internist and geriatric specialist at Concord Hospital, said it is difficult to learn one has the disease, but learning the diagnosis can help family members understand the changes they are seeing, and compensate for deficits instead of repeatedly calling errors to their looved one's attention. This can reduce anxiety for everyone. 
She encourages people to be open about their diagnosis.
“The more people share the information with family, close friends, perhaps their church congregation, the better,” she said. “This lets people offer support and know what is going on, instead of misinterpreting forgetfulness as disinterest or unfriendliness. This reduces the isolation couples often feel with the illness.
“It's most important to have a support system to assist with functions they can no longer perform, like transportation and organizing medicine. They should continue to do the things they can do and get help with the things they cannot.”
The disease is fatal, and along the way there is deterioration. Personalities change, important things are forgotten. Family members can become discouraged.

Day by day
Meanwhile, life goes on. In the early stage of the disease there can be time for “travel, adventure, laughter and joy,” Barbara Zeckhausen said.
“We live each day. It won't get better than today and we try to find something interesting to do each day.
“We see a show, we'll visit a friend, we'll look at a family photo albums, we'll re-read important letters, call old friends to reminisce, take a walk, sing, play the trumpet, get an ice cream, review life at its high points.
“It's a wonderful trip down memory lane and that's where all the best memories are at this time.”
They are also grieving.
“We are grieving the loss of memories together,” she said. “We are grieving what is to come.”
“Bill's courage, determination and insights are really inspirational to me and to some of you here. The disease provides its frustrations, but I'm trusting the love we've shared for more than 61 years will keep us going and get us through.”

• • •

Symptoms

Everyone has occasional memory lapses. It's normal to lose track of where you put your keys or forget the name of an acquaintance. But the memory loss associated with Alzheimer's disease persists and worsens, affecting your ability to function at work and at home.

People with Alzheimer's may:

Repeat statements and questions over and over, not realizing that they've asked the question before
Forget conversations, appointments or events, and not remember them later
Routinely misplace possessions, often putting them in illogical locations
Get lost in familiar places
Eventually forget the names of family members and everyday objects
Have trouble finding the right words to identify objects, express thoughts or take part in conversations

Behavior, personality changes

Brain changes that occur in Alzheimer's disease can affect the way you act and how you feel. People with Alzheimer's may experience:

Depression
Apathy
Social withdrawal
Mood swings
Distrust in others
Irritability and aggressiveness
Changes in sleeping habits
Wandering
Loss of inhibitions
Delusions, such as believing something has been stolen
Many important skills are not lost until very late in the disease. These include the ability to read, dance and sing, enjoy old music, engage in crafts and hobbies, tell stories, and reminisce.
Source: Mayo Clinic

Resources:

• Alzheimer’s Association: https://www.alz.org, 603-606-6590
• Centers for Disease Control: https://tinyurl.com/y9h2nypa
• Mayo Clinic, Alzheimer’s disease: https://tinyurl.com/yddlhs3g
• Support Groups – Congregational Church, 603-524-0668

Books:

“Being Mortal: Medicine and What Matters in the End,” by Atul Gawande
“Alzheimer's from the Inside Out,” by Richard Taylor