WHAT IT’S LIKE TO BE AN ALZHEIMER’S CARE­GIVER

Chattanooga Times Free Press - Parade - - Stay Healthy - By Mary­grace Tay­lor

For ev­ery one of the 5.5 mil­lion U.S. adults who have Alzheimer’s dis­ease or an­other form of cog­ni­tive de­cline, there’s a per­son work­ing tire­lessly to care for them. We asked three care­givers to share their sto­ries. DAN GASBY: LEARN TO LIVE WITH UN­PRE­DICTABIL­ITY

“I could look across the room and read her eyes and her body lan­guage with­out see­ing her mouth move.”

That’s the way 64-year-old Gasby de­scribes his re­la­tion­ship with his wife, the restau­ra­teur and for­mer model B. Smith, be­fore she was di­ag­nosed with early-on­set Alâheimer’s wve years ago at age 63.

Now Gasby gets up early in their East Hamp­ton, N.Y., home to have some quiet time and plan out the lo­gis­tics of their day. Some­times he can help Smith bathe, get dressed and eat break­fast in 45 min­utes. Other days, it might take twice that long. The woman he could once read like a book has be­come un­pre­dictable. “Ev­ery day, I know I’m go­ing to go through a range of emo­tions, from her hat­ing me and call­ing me names to her thank­ing me for be­ing there,” he says.

Though Gasby will some­times lose his pa­tience—and later will feel ter­ri­bly guilty— he keeps on do­ing the best he can. Smith is still the woman that he loves, he says, “and I know if it was in re­verse, she would do the same for me.”

ROSITA PEREZ: SOME­TIMES YOU’LL FEEL LIKE A FAIL­URE (BUT YOU’RE NOT!)

Learn­ing how to be a care­giver for her mother, Is­abel, wasn’t easy. “I had to tread lightly,” says Perez, who was in her early 20s when her mom was di­ag­nosed with Alzheimer’s in 2003 at age 60. When Is­abel grew fear­ful of wa­ter, Perez, who lives in Pauls­boro, N.J., put a play­ful spin on bath time. “I’d tell her we had to get dolled up to go out.”

Is­abel even­tu­ally moved in with her daugh­ter, then came to the or­thotics lab Perez man­ages, with the com­pany’s per­mis­sion. When Perez wnally had to put her in a nurs­ing home, “I felt like I had failed,” she says.

Perez even­tu­ally found in­valu­able sup­port through the Alzheimer’s As­so­ci­a­tion 24/7 Helpline, and she knew she had to pay that gift for­ward. Even though her mother died in 2016, Perez con­tin­ues to speak on be­half of the as­so­ci­a­tion. “The most im­por­tant thing is just to be avail­able for care­givers,” she says. “Come over so they can go out and grab a bite to eat. Lit­tle things like that mean a lot."

JAN­ICE JONES*: GET­TING SUP­PORT CHANGES EV­ERY­THING

When Jones’ hus­band, John, was di­ag­nosed with Lewy body de­men­tia (a form of de­men­tia ac­com­pa­nied by symp­toms of Parkin­son’s dis­ease) in 2013, she wor­ried about whether she’d be able to care for him. So she started re­search­ing as much as she could and joined an on­line sup­port group for spouses.

Now she has the tools to dif­fuse difwcult sit­u­a­tions, like when John, 74, has an an­gry out­burst. “I’ll im­me­di­ately stop what I’m do­ing and re­di­rect him. He likes to play Yahtzee or Phase 10 to­gether, or I’ll tell him about a good mem­ory,” she says. When she's stressed, she texts her daugh­ter or son, who will re­ply right away with some­thing to make her laugh.

Jones, 72, doesn’t deny that car­ing for her hus­band can be exhausting. And even though LBD has changed their re­la­tion­ship, not ev­ery change has been for the worse. “At wrst he wasn’t ap­pre­cia­tive of what I did. He was an­gry he couldn’t do it him­self,” she says. “Now he ex­presses how much he ap­pre­ci­ates our lives to­gether. There’s a softer side to him that I never knew be­fore.” *Name has been changed for pri­vacy

‘Ev­ery day, I know I’m go­ing to go through a range of emo­tions, from her hat­ing me and call­ing me names to her thank­ing me for be­ing there.’

Dan Gasby and B. Smith in 2015

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