JARDINE: Caregivers share emotions, advice in Modesto Alzheimer's group

jjardine@modbee.comMay 22, 2013 

— At the end of a very long assemblage of tables, boxes of Kleenex spaced evenly throughout, Alison Hetrick began.

"I can't survive without you," she told the 30 or so people in the room. "You're my sisters, my brothers, my family."

Members of the Alzheimer/ Dementia Support Group are precious to her, she said, because many have been where she is going, endured what she is enduring or face what she is facing.

Her husband, Jerry, has Alzheimer's disease. She took care of him as long as she could. Over time, the disease known as "the long goodbye" strips its victims of their minds, their memories and their personalities. Lives and relationships change, often on a daily basis as the disease progresses. Such change puts incredible strains on families and relationships, as Alison has experienced. She soon will place Jerry into a specialized care facility in Tracy. In fact, at times he believes he's already there.

An old man simply losing his memory? Hardly. Jerry is 66.

Around the table they went, sharing information, stories, problems and solutions about caring for their loved ones. For some, it's the only real break they'll get all week.

Jewell Kee continues to attend even though her husband, Loyde, died last August.

Caregivers don't stop caring just because a loved one passed. To the contrary, they still have unanswered questions themselves and might also have answers for those just beginning the journey. And they continue to attend because they become so close to the others in the room.

This caregivers' group began when the Alzheimer's Aid Society of Northern California occupied the same space and offered the same purpose in Modesto. In February, the nonprofit consolidated all of its administrative functions by moving them to Sacramento. It suspended its group sessions for several months while it worked out a deal to use Sutter Health facilities.

Caregivers here, already dealing with the frustrations, heartaches and stresses of caring for Alzheimer's and dementia patients, weren't about to wait for the Alzheimer's Aid Society to resume its meetings.

Cindy DenBrave of Modesto rented the same space and formed the Alzheimer/Dementia Support Center Inc., and is creating a nonprofit corporation.

Her organization's role became more vital after the DMC Foundation went out of business last month, closing its Miller's Place adult and Alzheimer's day care programs. Caregivers who relied on Miller's Place for help no longer have that option.

For many, the new organization's weekly group session is important because they can learn from one another while their loved ones have their own session next door.

They trade their experiences with hospitals and emergency rooms. They discuss the inevitable, including advance directives and do-not-resuscitate orders. They share information on dealing with agencies including Medicare and Medi-Cal. They tell about financial impacts and strategies. Some families have had to sell or even lost their homes to pay for care when they could no longer provide it themselves.

They bring fresh information on the availability — or unavailability — of beds in long-term care facilities. They listen when DenBrave tells them the information is valuable, but also variable. "What fits for one (patient or family) won't always fit for another," she said. "All you can do is what's right for you."

And they talk about their own lives with an Alzheimer's patient, among them a caregiver tending to his wife at their Samaritan Village apartment. "I took a nap," he said. "I woke up, she'd taken off."

Fortunately, she wore a "take me home" tag, enabling a staff member to bring her back to the apartment house because she could not remember where she lived.

The same gent also told of another instance, when he needed to prevent her from leaving. "I took a blanket and sheet and pillow and laid down on the floor in front of the door," he said.

She escaped anyway, trampling him to get away.

"The staff brought her home again," he said.

Another caregiver told the story of a husband who realized he was beginning to have problems. He handed her the checkbook one day. When she asked why, he replied, "Because I don't know what I am doing."

Some stories draw laughter, if only because they've all been through the same kinds of things. It's therapeutic.

"Sometimes a caregiver makes it too complicated," Alison Hetrick has learned. "The simpler, the better. Jerry was on a really good plateau for a long time. The last few months, he's really been crashing. He looks different. He's shrinking."

In his better moments, he understands what happening to him.

"It's demoralizing," Jerry said. "Four years ago, I was in great shape. It drags you down."

Jeff Hollis has been taking care of his wife, Undean, for several years. A schoolteacher, she was fired because she no longer could concentrate. No one knew then that she had Alzheimer's.

"She'd lost her job, she'd lost her home," Hollis said.

Former students occasionally will see her and say hello. She greets them with a smile and hug.

"But she doesn't remember them," Hollis said.

And Lorie Ventura takes care of her parents. Bob and Frances Ventura both have Alzheimer's.

Like Alison Hetrick, Lorie has learned not to complicate things.

"You go for walks. You pet dogs. You do gardening," she said. "You can have a great life. But it took me a long time to get the hang of it."

Time, and scores of new friends traveling a similar road.

And don't forget the Kleenex.

Jeff Jardine's column appears Sundays, Tuesdays and Thursdays in Local News. He can be reached at jjardine@modbee.com, @jeffjardine57 on Twitter or at (209) 578-2383.

The support group meets Mondays at 9:30 a.m. at 700 McHenry Ave., Suite B. Contact the Alzheimer/ Dementia Support Center at (209) 577-0018 for more information.

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