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Vicki Bartholomew started a support group for wives who are caring for a husband with Alzheimer鈥檚 disease because she needed that sort of group herself.

They meet every month in a conference room at a new memory-care facility in Nashville called聽, where Bartholomew鈥檚 husband was one of the first residents 鈥� a Vietnam veteran and prominent attorney in Nashville.

鈥淢y husband鈥檚 still living, and now I鈥檓 in an even more difficult situation 鈥� I鈥檓 married, but I鈥檓 a widow,鈥� she tells the group one day.

These women 鈥� who are roughly 50 to 75 years old 鈥� draw the shades and open up to each other in ways they can鈥檛 with their lifelong friends.

Vicki Bartholomew鈥檚 husband, Sam, has been at Abe鈥檚 Garden in West Nashville since it opened in 2015.(Credit courtesy Vicki Bartholomew)

鈥淭hey鈥檙e still wonderful friends, but they didn鈥檛 know how to handle this. It was hard for them, and as you all know, your friends don鈥檛 come around as much as they used to,鈥� Bartholomew said. 鈥淚 was in bad shape. I didn鈥檛 think I was 鈥� I did have health problems, and [now] I know I was depressed.鈥�

As the number of Americans afflicted with Alzheimer鈥檚 disease continues to swell to an estimated 5.7 million, so do the legions of loved ones caring for friends and family members. The toll on Bartholomew鈥檚 own mental health is one of the reasons the Alzheimer鈥檚 Foundation of America focuses on the nation鈥檚 estimated聽.

With no cure on the horizon, the foundation has been highlighting the necessity of better support for those caregivers through a聽. It stopped in Nashville earlier this spring, was in Milwaukee in June and heads to Fairfax, Va., in September.

At the live events, Alzheimer鈥檚 researchers and clinicians offer guidance on a number of topics, including how to ensure safety for patients at home, care planning and even how to聽聽with memory loss.

The organization promotes in-person and聽, since being a caregiver is often a barrier to getting out of the house alone. Virtual support systems showed effectiveness at reducing loneliness, stress and depression聽.

鈥淲e have to do everything we can to educate a caregiver, to provide them with the best practices on caring for somebody,鈥� said Charles Fuschillo Jr., the AFA鈥檚 CEO.

For example, the AFA聽聽that family members:

• Feed Alzheimer鈥檚 patients one food at a time. 鈥淎 busy plate can be confusing,鈥� the group says.
• Mark rooms in the house with signs to avoid unnecessary confusion.
• Remind a person with Alzheimer鈥檚 to use the toilet; don鈥檛 wait for them to ask.
• When traveling, stick with familiar destinations.
• Watch for a cough while eating; it can signal a swallowing disorder in people with dementia.
• Schedule overnight stays at a memory-care facility so the caregiver gets some respite.

Just as important, Fuschillo said, 鈥渨e want to do everything we can to avoid caregiver burnout.鈥�

The breaking point sneaks up on even the most committed caregiver, say Alzheimer鈥檚 advocates, especially as the nights grow more sleepless. Alzheimer鈥檚 patients can tend to pace, or wake up their partner every few minutes. They can become violent. Or, perhaps worse, they can leave the house.

鈥淎nd I鈥檝e had some issues at night that I had to take care of alone,鈥� Pam Hawkins, who cares for her husband with Alzheimer鈥檚, said during a support session. 鈥淏ut I鈥檓 not ready to have anyone there at night.鈥�

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

She鈥檚 had to hire caregivers during the day. Knowing how to find and hire the right person is a shared concern by Alzheimer鈥檚 family members that inspired a聽聽for navigating the process. Tips include these: Interview the aide in the home. Over-share information about the patient. Ask what kind of quality control a supervisor would provide.

Hawkins is adamant about keeping her husband at home, whatever the cost.

鈥淗e鈥檚 not going anywhere,鈥� she said. 鈥淗e鈥檚 staying at our home until he moves to heaven. We made that decision a long time ago.鈥�

But many caregivers have no choice.

April Simpkins said tending to her husband became all-consuming, and she鈥檚 young enough that she still needs to keep her job; she works at a local university.

鈥淚t was not possible for us to keep Joe at home,鈥� she said.

Simpkins found she鈥檇 often have to call her husband鈥檚 siblings to settle him down over the phone. 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 that she wasn鈥檛 doing enough.

鈥淭here鈥檚 a lot of 鈥� glory given to the whole idea of someone being long-suffering and staying at home and giving up their life, basically, to care for their loved one,鈥� Simpkins said. 鈥淚t makes it harder for people who can鈥檛 do that.鈥�

Everyone around the table nodded in agreement. Whatever stage of illness their loved one is experiencing, these caregivers understand the complicated existence that many have dubbed 鈥渢he long goodbye.鈥�

April and Joe Simpkins at Abe鈥檚 Garden, the Nashville memory-care facility where Joe moved as his Alzheimer鈥檚 advanced.(Blake Farmer/WPLN)

Along with sharing the sorrow, they find a way to share in the humor of it all 鈥� one woman said her husband wears a laundry-basket鈥檚-worth of shirts and pants because he forgets he鈥檚 already gotten dressed. Even tips on how to reduce the odor from incontinence are offered with a loving laugh.

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

Simpkins,聽54, sits down for lunch with Joe, who is a former state employee and a youthful-looking 66 years old. She drapes an arm around his slumping shoulders and assists him as he spears a cold strawberry with his fork.

鈥淵ou know, there are some days,鈥� she said, interrupted by a random reflection from Joe. 鈥淵eah, some days are clearer than others.鈥�

Simpkins tries to stop by to see her husband every day. But it鈥檚 a wicked kind of blessing, she said, that when she misses a visit, Joe no longer notices.

This story is part of a partnership that includes , and Kaiser Health News.

麻豆女优 Health News鈥� coverage of these topics is supported by , and