LIFE

Alzheimer's sparks struggles for caregivers

Jen Todd
USA TODAY NETWORK – Tennessee
Glenda Mernaugh cares for her mother Billy Jean Judd, who has dementia Thursday, Jan. 7, 2016, in Franklin, Tenn.

Glenda Mernaugh gives her 87-year-old mother homework.

Some mornings it's writing her birth date 10 times. Sometimes it's writing her name.

But despite medication and memory exercises, Billy Jean Judd still forgets.

"I feel there’s been a role reversal and I’m the mom and she’s the child, and I don’t like that," Mernaugh said. "She’s my mom."

In August, Mernaugh and her husband, Ray, became primary caregivers for Judd, who has dementia.

It's a role some people choose to champion, while others stumble into it.

But for all caretakers of patients with dementia or Alzheimer's, there are ups and downs.

Mernaugh's experiences, like many others in her shoes, highlight the devastating nature of the diseases — not just on those suffering them directly but those providing care.

'Too much for me'

Judy Meyers met Lillian Fults while working at an assisted living facility. Meyers quit working when a sciatic nerve in her leg made her unable to do so.

When Fults asked Meyers to live with her at her home, Meyers took time to consider it. She was aware of the struggles, but Meyers eventually agreed.

Fults has undergone at least 20 surgeries and can barely walk. She simultaneously fought pneumonia and a kidney infection this winter.

And she still makes snappy comments to her husband, who is deceased.

"Some days she is very sharp," Meyers said

Meyers sits with her when she awakens at night — sometimes all night — by her chair in the living room. Fults refuses to sleep in her bed.

"The doctor has specifically said, 'Get in the bed where you will turn over,'" Meyers said. "She has a mind of her own at 83."

And, she has a bed sore.

Meyers bathes and dresses her, prepares food for her, and waits on her hand and foot.

After three months of care and three runs to the hospital just in January, Meyers believes Fults needs more help than she can offer.

"It’s just too much for me," she said. "She needs to be in a nursing home."

Out of love

April Walker goes to work Monday through Friday from 11 a.m. to 3 p.m., persuading Mary Elizabeth King to sit with her instead of spending all day in bed.

King is the 10th Alzheimer's patient Walker has cared for, most of whom have been through Home Instead Senior Care.

"You love them for one because they’re so sweet and precious," she said. "Especially this one right here."

Walker gives King's husband, Bart, time to work and run errands.

King never forgets Walker, although sometimes she blanks on her husband.

"I can tell sometimes he has been crying," she said.

Even at a rather early onset, the disease can be frustrating for both patients and those watching.

"She’ll make comments a lot of time like ‘My mind’s just not what it used to be,'" Mernaugh said about her mother. "She’s aware that it is changing, but there’s nothing really we can do about it."

Judd can no longer quilt or crochet, hobbies she enjoyed for most of her life.

Some days King can't even tie her shoes.

"I hate when they forget to do stuff like that," Walker said. "That’s the easiest thing you can do and she couldn’t today for some reason."

The job goes beyond being responsible for the health and everyday needs of the patients.

The caregivers have tackled searching for keys misplaced by patients, refusal to eat, and even non-emergency calls to 911.

Then there's the financial burden.

When Meyers was considering Christmas plans, she noticed sitters' fees doubled to $40 per hour.

"I can’t afford that, and Lillian can’t either," she said.

Mernaugh and her husband have found a full-time care facility in Judd's hometown in Kentucky that is cheaper than any facility they trusted in Middle Tennessee — but they're on the waiting list, with no timeline when they might be admitted.

The family found solace in Winfield Adult Day Center, simply, a daycare for seniors.

"Now she misses it on the weekends," Mernaugh said.

Sometimes, caregiving can be a thankless job. But while each caregiver battles different struggles with their elderly pair, they say they all do it out of love.

"I just love being with them," Walker said. "A lot of them have got a lot of wisdom they can teach you."

Reach Jen Todd at 615-313-2760 or on Twitter @jentoddwrites.

Caregivers support

Winfield Adult Daycare Center, 900 Heritage Way in Brentwood, www.theheritagelcs.com/health-and-wellness/winfield, 615-241-5377

Tennessee Respite Coalition, 2200 21st Ave S suite 310, www.tnrespite.org, 1-888-579-3754

Alzheimer's Association Middle Tennessee Regional Office, 4825 Trousdale Drive, Suite 220, www.alz.org/altn, helpline 1-800-272-3900

Greater Nashville Regional Council Area Agency on Aging and Disability, 501 Union Street, 6th Floor, www.gnrc.org/agencies-programs/aaad/about-aaad/family-caregiver, 615-862-8829 

Mental Health Association of Middle Tennessee Caregivers Support Group: third Tuesday of every month from 10:30 a.m.-noon. 446 Metroplex Drive, Suite A-224, RSVP at 615-269-5355

Vanderbilt Frontotemporal Dementia Caregiver Support Group: first Tuesday of every month at 7 p.m. 2015 Terrace Place, 615-936-0337

National Family Caregiver Support Program, hotline 1-866-836-6678, www.tn.gov/aging/topic/caregiver-support#sthash.XbxjwAHs.dpuf