Honolulu Star-Advertiser - - FRONT PAGE - By Nina Wu nwu@starad­ver­

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.”

Robert Gran­tham

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. hawaii, 591-2771 >> Hawaii Ag­ing and Dis­abil­ity Re­source Cen­ter:

www.hawai­ >> The Care­giver Foun­da­tion: www.the­care­giver­foun­da­tion. 625-3782 >> Male Care­giver Com­mu­nity: www.male­care­giver­com­mu­nity. >> VA Care­giver Sup­port Group:­,

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.

Frances Kaku­gawa:

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