Family Caregivers Need Support, Too, Say Alzheimer's Advocates : Shots - Health News As the number of people with Alzheimer's climbs, so does the number of loved ones caring for them. The health of 16 million unpaid U.S. caregivers has become a focus for Alzheimer's advocacy groups.
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Family Caregivers Exchange Tips, Share Stories To Ease Alzheimer's Losses

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Family Caregivers Exchange Tips, Share Stories To Ease Alzheimer's Losses

Family Caregivers Exchange Tips, Share Stories To Ease Alzheimer's Losses

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  • <iframe src="https://www.npr.org/player/embed/621110042/626442145" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
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NOEL KING, HOST:

People who are living with Alzheimer's disease need caregivers. And often, that job falls to a family member or a close friend. It is a difficult role. And now some caregivers are getting some extra support. Blake Farmer reports from member station WPLN in Nashville.

BLAKE FARMER, BYLINE: Vicki Bartholomew started this monthly support group because she needed it herself.

VICKI BARTHOLOMEW: My husband's still living, and now I'm in an even more difficult situation. I'm married, but I'm a widow.

FARMER: They gather in a conference room where her husband now lives, a residential facility called Abe's Garden. They draw the shades and open up in ways they can't with their closest friends.

BARTHOLOMEW: They don't understand that I need them.

UNIDENTIFIED PERSON #1: We do.

UNIDENTIFIED PERSON #2: We do.

BARTHOLOMEW: You all do.

FARMER: Bartholomew's husband, a prominent local attorney, moved out in 2015. And she's starting to remember him more fondly - when he could care for her. But that's a recent breakthrough.

BARTHOLOMEW: I was in bad shape by the time he - I didn't think I was.

(CROSSTALK)

BARTHOLOMEW: Now, I did have health problems. And I know I was depressed now.

FARMER: The toll on Bartholomew is why the Alzheimer's Foundation of America focuses on the estimated 16 million unpaid caregivers in the U.S. CEO Charles Fuschillo says, without an imminent cure, the foundation has been highlighting the necessity of those caregivers and promoting in-person and telephone support groups along with webinars.

CHARLES FUSCHILLO: To provide them with the best practices on caring for somebody - but so equally as important, we want to do everything we can to avoid caregiver burnout.

FARMER: It sneaks up on even the most committed, especially as the nights grow more sleepless. Alzheimer's patients will pace the house or wake up their partner every few minutes. They could even become violent.

PAM HAWKINS: And I've had some issues at night that I had to take care of alone. But I'm not ready to have anyone there at night.

FARMER: Pam Hawkins had to hire caregivers during the day. But she's adamant about keeping her husband at home.

HAWKINS: He's not going anywhere. He's staying at our home until he moves to heaven. We made that decision a long time ago.

FARMER: But many caregivers have no choice. April Simpkins says tending to her husband became all-consuming. And she's young enough that she still needs to work.

APRIL SIMPKINS: It was not possible for us to keep Joe at home.

FARMER: One night, she had to dial 911 when he kept yelling in the hallways of their condo building. And yet, she felt some societal pressure.

A. SIMPKINS: There's a lot of glory given to the whole idea of someone being longsuffering and staying at home and giving up their life, basically, to care for their loved one. And it makes it harder for people who can't do that.

FARMER: Everyone around the table nods in agreement. Despite the varied stages, they understand the complicated existence many call the long goodbye. The support group ends with hugs. Some head for the parking lot. Others buzz through the locked doors to see their husbands. April Simpkins sits down for lunch with Joe.

A. SIMPKINS: Look at that. Use the fork. Let me get a strawberry for you. Is it good?

JOE SIMPKINS: Cold.

A. SIMPKINS: Cold?

J. SIMPKINS: A little on the cold side, yeah.

A. SIMPKINS: (Laughter).

FARMER: April drapes an arm on her husband's slumping shoulders. He's just 66 and looks younger.

A. SIMPKINS: You know, there are some days that are...

J. SIMPKINS: How many of you think I'm capable of handling myself? Raise your hands.

A. SIMPKINS: (Laughter).

Yeah, some days are clearer than others.

FARMER: April tries to stop by every day. But she says it's a wicked kind of blessing that when she misses a visit, he no longer notices. For NPR News, I'm Blake Farmer in Nashville.

(SOUNDBITE OF BONOBO AND FINK'S "IF YOU STAYED OVER")

KING: That story was part of a reporting partnership between Nashville Public Radio, NPR and Kaiser Health News.

(SOUNDBITE OF BONOBO AND FINK'S "IF YOU STAYED OVER")

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