Circle of Support: Family caregivers share stories and tips to ease the toll of Alzheimer's

Vicki Bartholomew created a support group for women who cared for a husband with Alzheimer's disease because she herself needed this kind of group.

They meet each month in a conference room at Abe's Garden, where Bartholomew's husband was one of the first residents – a veteran from Vietnam and a prominent attorney in Nashville.

"My husband is still alive, and now I am in an even more difficult situation – I am married, but I" I am a widow, "she tells the group one day

These women draw the shadows and open up to each other as they can not with their friends forever.

Vicki Bartholomew's husband, Sam, has been Abe's Garden in West Nashville since it opened in 2015. (Credit: Vicki Bartholomew)

"They are still wonderful friends, but they did not know how to handle that. It was hard for them, and as you all know, your friends do not come as often as before, "Bartholomew said. "I was in poor condition, I did not think I was – I had health problems, and [now] I know I was depressed."

Then that the number of Americans with Alzheimer's disease continues to increase to about 5.7 million, with legions of loved ones taking care of friends and family members Bartholomew's mental health record is one of the reasons why the Alzheimer's Foundation of America is focusing on the 16 million unpaid caregivers in the nation.

Without any cure On the horizon, the foundation stressed the need for better support through a national tour.He stopped in Nashville earlier this spring, was in Milwaukee in June and headed for Fairfax , in September.

At live events, Alzheimer's researchers and clinicians offer advice on a number of topics, including: including patients at home, planning care and even how to entertain someone with a loss of memory.

The organization promotes support groups in person and by phone because being a caregiver is often a barrier to leaving the house. In a small study in 2014, virtual support systems have been shown to reduce loneliness, stress and depression.

"We Must Do Everything to Educate a Caregiver" Charles Fuschillo Jr., CEO of AFA

For example, AFA recommends to family members:

• Feed Alzheimer's patients, one food at a time. "A busy plate can be confusing," says the group
• Mark the rooms of the house with signs to avoid unnecessary confusion.
• Remind a person with Alzheimer's disease to use the toilet; do not wait until they ask you.
• When traveling, stay with familiar destinations.
• Watch for cough while eating; it can signal a swallowing disorder in people with dementia.
• Schedule overnight stays in a memory care facility so that the caregiver can have respite.

Equally important, Fuschillo says: "

The breaking point sneaks even in the most committed caregiver, say advocates of Alzheimer's disease, especially as the nights become more and more insomniacs. Patients with Alzheimer's disease may have a tendency to speed up or wake up their partner every few minutes. They can become violent. Or, perhaps worse, they can leave the house.

"And I had some problems the night I had to occupy myself alone," said Pam Hawkins, who takes care of her Alzheimer's husband, at a time when support session. . "But I'm not ready to have someone there at night."

For now, she says, her husband usually sleeps all night. And if there is a problem, his son-in-law is 15 minutes away.

She had to hire caregivers during the day. Knowing how to find and hire the right person is a concern shared by members of the Alzheimer's family who inspired a checklist to navigate the process. Tips include these: Interviewing help at home. Over-share information about the patient. Ask what type of quality control a supervisor could provide.

Hawkins is adamant about keeping her husband at home, no matter what the cost.

"He's not going anywhere," she said. "He stays home until he moves to paradise, we made this decision a long time ago."

But many caregivers do not have a choice.

April Simpkins said that taking care of her husband was becoming devouring, and that she was young enough for her to keep her job; She was working at a local university

"We could not keep Joe at home," she says.

Simpkins often had to call her husband's siblings to install him over the phone. One night, she had to call 911 when he continued screaming in the corridors of their condo building.

And yet, she felt social pressure that she was not doing enough.

"There is a lot of … the idea of ​​someone who has been suffering for a long time and stays at home and gives up his life, basically, to take care of his loved one," he said. Simpkins. "It makes things harder for people who can not do that."

Everyone around the table nodded their agreement. Whatever the stage of their loved one's illness, these caregivers understand the complicated existence that many have dubbed "long goodbye".

April and Joe Simpkins at Abe's Garden, the Nashville Memory Care Center. (Blake Farmer / WPLN)

In addition to sharing the sorrow, they find a way to share the humor of it all – a woman said that her husband was wearing a suitcase of shirts and pants because he forgets that he has already been dressed. Even tips on how to reduce the smell of incontinence are offered with a loving laugh.

The support group ends with hugs. Some women go to the parking lot. Others buzz through the locked doors to see their husbands.

Simpkins sits down for lunch with Joe, who is a former state employee and a 66-year-old man. She drapes an arm around her sagging shoulders and badists him as he throws a cold strawberry with his fork.

"You know, a few days ago," she said, interrupted by Joe's random reflection. "Yes, some days are clearer than others."

Simpkins tries to stop to see her husband every day. But it's kind of a nasty blessing, she says, that when she misses a visit, Joe does not notice her anymore.

This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health News. ] The coverage of these subjects by KHN is supported by
John A. Hartford Foundation and
The SCAN Foundation