ALZHEIMER’S DISEASE THRUSTING MORE MEN INTO CAREGIVER ROLE
Their ranks are likely to grow as boomers age, because two-thirds of Alzheimer’s sufferers over age 65 are women >>
ROBERT GRANTHAM, 81, met his wife, June, on a blind date on Oct. 19, 1953, in Philadelphia. You could say it was love at first sight. They married a year later on April 24, 1954.
The Granthams take their wedding vows seriously, especially the part about “in sickness and in health.” June remained by Robert’s side when he fell into a temporary coma after surgery in 2010, and now, he says, it’s his turn.
His wife, 83, was diagnosed with Alzheimer’s disease about two years ago.
“I’ve been married to this wonderful woman for 58 years, and all of a sudden she’s like a different person,” said Grantham, a retired insurance executive.
“She’s a very beautiful woman, there’s no question about it. The worst part for me is that this wonderful, elegant lady is disappearing before my very eyes.”
June Grantham began showing early symptoms of Alzheimer’s in 2010. She began forgetting where she put things, including the car keys, leaving them in unusual places like inside the refrigerator.
Today she is unable to remember the names of the couple’s four children or past events in her life, and during conversations her thoughts are fragmented.
Alzheimer’s is a progressive form of dementia that diminishes memory and other brain functions, interfering with daily life. The symptoms get worse over time, and there is no cure.
In Hawaii there are an estimated 31,000 people over the age of 65 who have been diagnosed with Alzheimer’s, the sixth-leading cause of death in the United States.
The number is likely much higher considering those who suffer from it but have yet to be diagnosed, according to Jody Mishan, coordinator of the State Task Force on Alzheimer’s Disease and Related Dementias.
While women remain the majority of caregivers for Alzheimer’s patients, a growing number of men are showing up at support groups, according to Gary Powell of the Caregiver Foundation, a Hawaiibased nonprofit that provides support services.
While men made up 19 percent of people caring for loved ones with Alzheimer’s or dementia in 1996, that number increased to 40 percent by 2009, according
“The worst part for me is that this wonderful, elegant lady is disappearing before my very eyes.”
About his wife, June, of more than 50 years, who is suffering from Alzheimer’s disease
to the Alzheimer’s Association. More men are likely to become caregivers as the baby boom generation ages, and considering that two-thirds of people over 65 with Alzheimer’s are women.
Grantham has learned that being a caregiver for someone with Alzheimer’s is a 24-hour job, seven days a week.
He took over the household chores, which were foreign to him since his wife had taken care of the home. He said he rarely entered the kitchen, which was her domain.
“She was the world’s greatest cook,” he said, remembering June’s specialties, such as Swedish meatballs, turkey tetrazzini and homemade soup.
Now he’s proud to say he can scramble eggs and find his way around the kitchen.
In the mornings he helps his wife pick out her outfit. He does the driving, since she no longer can. He also manages their prescription medications and makes sure they both keep all of their doctor’s appointments.
Most important, said Grantham, is making sure his wife doesn’t take another fall, which happened last year, resulting in a broken hip.
He holds her hand as they walk and answers
her repeated questions — such as “What day is it?” — as many as 50 times a day. It takes patience, he said, but also helps to understand that in her mind she’s asking the question for the first time every time.
Activities they still enjoy together include riding in his childhood dream car — a classic, 1950 Studebaker — whether to the supermarket, church or just around the neighborhood.
June Grantham, once an avid crafter of miniature dollhouses and replicas with intricate details, still likes to work with her hands.
After a year of caring for his wife, Grantham was burning out. At the urging of their children, he hired a caregiver who helps out in their home five days a week.
It’s made a huge difference, he said.
Grantham advises any caregiver going it alone to reach out and find others to talk to. His recent participation in an Alzheimer’s Association support group for caregivers was an eye-opening experience.
Sometimes friends and family members tend to retreat when they learn about the Alzheimer’s, he said.
“They don’t understand it and they don’t know what to do about it,” he said.
Talking to others in the group — both men and women — who are going through the same experiences was helpful, he said. They met once a week over 15 weeks, and though the sessions are over, they plan to get together on their own once a month.
MORE SUPPORT services for all caregivers are needed in Hawaii, Mishan said.
“Hawaii has a huge number of caregivers, based on the last U.S. census, providing unpaid care,” she said. “If not for these caregivers, everything would fall apart.”
In 2011 an estimated 62,607 caregivers provided about 71.3 million hours of unpaid care valued at about $864.1 million, according to the Alzheimer’s Association.
A larger percentage of dementia care is now being done at home, said Mishan, who is leading state efforts to draw up a plan for dealing with the growing number of Alzheimer’s and dementia sufferers. Recommendations will be presented to the state Legislature in 2014.
Mishan says Hawaii is one of at least 20 states in the U.S. drawing up similar plans.
In the early stages of the disease, caregiving may involve reminders about appointments, help remembering words or names, and doing familiar tasks.
Caregiving becomes tougher in the middle stages of Alzheimer’s, which are typically the longest and can last for many years. Patients may need help bathing or getting dressed, and can act in unexpected ways or experience depression, irritability and repetitive behaviors.
Intensive, around-theclock care is required in the late stages, when Alzheimer’s patients have difficulty eating and may no longer be able to walk or communicate with words.
Gary Powell, executive director of the Caregiver Foundation, said a common trio of caregiving emotions are anger, resentment and guilt.
The stress affects relationships in and outside the family. Powell said accepting what’s happened is important in order to cope with the day-to-day tasks of caregiving. It’s also important to do away with misplaced guilt and to get regularly scheduled time off. Because of traditional gender expectations, men may have a harder time admitting they need help.
“Guys tend not to talk about their emotions,” said Thomas Harding, a Honolulu neuropsychologist. “They tend to be macho and say, ‘I can handle this.’ They’re less likely to go to a support group, and that puts them at higher risk of burnout.”
Yet caregiver stress is the fastest-rising type of depression in the U.S., according to Harding.
HAWAII-BORN author Frances Kakugawa found writing poetry a way to cope with caring for her mother with Alzheimer’s in 1997. She also began a support group for the Alzheimer’s Association in Honolulu in the late 1990s.
She had mostly women in her group, but a few men participated as well, including three who were caring for their mothers.
Rod Masumoto, 62, of Kaneohe was one of them.
When he first walked into her workshop three years ago, he told her flat out that he wasn’t into poetry. And yet he penned his first poem that day, titled “What Do I Feel?” and went on to write 30 more.
Today, Masumoto, a retired safety system specialist, will tell you writing those poems saved his life.
He cared for his mother, Fusae, for 14 years until her death from Alzheimer’s in September.
Before going to the workshop, he felt isolated in his daily challenges, which included helping his mother bathe, get dressed and eat. It was painful to him that she didn’t recognize her son or recall the things she had taught him.
Masumoto’s anger at the situation was growing, and he was overwhelmed.
“It’s a daily battle trying to survive, and (writing) helped me vent the anger and frustration,” he said. ALZHEIMER’S RESOURCES >> Alzheimer’s Association, Aloha Chapter: Free counseling, support groups, classes for caregivers, community presentations and resource library. Support groups meet monthly across Oahu. www.alz.org/ hawaii, 591-2771 >> Hawaii Aging and Disability Resource Center:
www.hawaiiadrc.org >> The Caregiver Foundation: www.thecaregiverfoundation. 625-3782 >> Male Caregiver Community: www.malecaregivercommunity. >> VA Caregiver Support Group: www.caregiver.va.gov,
855-260-3274 (Caregiver Support Line) >> Help for Alzheimer’s Families: www.helpfor
As he wrote poem after poem, Masumoto found not only an outlet for his emotions, but began to find acceptance for his mother’s situation, as well as a willingness to open up to changes.
“When you take care of somebody and remain in the box (isolated), you cannot survive,” he said. “You have to allow yourself to expand and to be flexible.”
Support groups can help you see that you are not alone, he said, or offer solutions you may not have considered. His advice is to be open to whatever services are available, whether it be home care, hospice or help around the house, so you’ll have more quality time with your loved one.
KAKUGAWA, who now lives in Sacramento, Calif., is the author of “Mosaic Moon” (2002), a compilation of poetry from those meetings, and “Breaking the Silence: A Caregiver’s Voice” (2010).
She continues to hold the writing group for caregivers in Sacramento and offers workshops throughout the U.S.
“We think caregiving is more for women because it demands so much nurturing, cleaning and tasks like giving baths,” she said. “But at the end these men become the most compassionate, most capable caregivers.”
Caregiving is physically exhausting, according to Kakugawa, but other aspects of it, such as handling finances and legal matters, can be stressful as well.
Men may better be able to compartmentalize their feelings in order to focus on caregiving tasks at hand, she said, but it does not necessarily mean they experience fewer emotions.
“At the end it really doesn’t matter which gender it is,” she said. “The experience demands the same thing from a caregiver, whether you’re a woman, a spouse or a brother. It really comes down to one thing, and that’s the humanity of what it takes to be a caregiver and to dignify the process.”
Rod Masumoto with his mother, Fusae. Masumoto cared for her for 14 years before her death in September.