For a while, Barbara Hebner would grab whatever things she could find, bundle them into her bathrobe, and then tie everything to her walker and head for the door. She wanted to go home.
Her first breakout attempt happened in 2018. Hebner somehow slipped past her vigilant daughter, Kimberly Hayes Bock, and got as far as the back gate, when a neighbor raised the alarm. The near-escape frightened Hayes Bock – and, as the fear wore off, made her feel guilty. She installed double-sided locks on the doors and a padlock on the gate.
The runaway phase lasted a few months. Once, during an episode, her mother slammed a walker into Hayes Bock, hitting her hard.
Now, 5 years later, Hebner still tries doors, but less often, and with less determination. Around 6 months ago, her thinking skills worsened. She can no longer put sentences together that make sense, says Hayes Bock, of Joplin, MO.
Day after day, year after year, the struggles caregivers face, both big and small, take their toll. Caregiving for a parent is a kind of role reversal: a dark mirror of the nurture and support that once went the other direction.
Hayes Bock’s situation is not a rare one; she’s one of 16 million unpaid caregivers in the U.S. But here, there is no strength in numbers. The job itself is so solitary that many struggle alone.
With a young child, even on difficult days, it’s easy to imagine the happy milestones: the first steps, or the first day of school. Caregivers don’t see a bright future for their loved one – only decline. Alzheimer’s disease and other types of dementia chip away at your dignity and independence, while caregivers figure out how to manage jobs, family obligations, and ever-present guilt and sleeplessness.
There are moments of grace, like a smile of recognition, or a squeeze of the hand. There are also flashes of humor. Hayes Bock recalls the time she was looking for her mom’s 40-ounce purple bottle, and found it on the nightstand wearing a lampshade. The lamp was in the trash. “We struggle because they have changed,” she says. “The moments of grace come when we realize that a lot of the suffering is ours, as caregivers.”
Hebner moved in with Hayes Bock in 2016, not long after she was diagnosed with mild cognitive impairment. They tried memantine and Aricept, drugs for moderate to severe Alzheimer’s that can help with confusion and memory loss. Neither drug helped, and the side effects were intolerable.
Today, at age 80, Hebner needs 24/7 care. She no longer recognizes her daughter, who calls her “Barbara” instead of “Mom” sometimes, because Hebner no longer responds to “Mom” or “Mother.” She needs help bathing, but she can still dress herself, even if she ends up with mismatched clothes and her shoes on the wrong feet. Her habit of ripping the crotch out of her depends and then flushing it once earned a $450 charge from the plumber.
Hayes Bock recently posted in a caregiver support group on Facebook that she didn’t know what was worse: finding feces on the floor, or being properly prepared to clean it up, because such messes happen so often. Hayes Bock has learned to laugh it off. “It’s the ugly, hard situations that bring out the patience you never knew you had. Those moments when keeping their dignity becomes top priority,” she says. “As caregivers, we are looked at like rock stars. If I can just get us through this with that dignity intact, whether she knows it or not, it will be a win. No rock star here, just a daughter trying to do right by my mom.”
Over the years, Hayes Bock has relied on paid caregivers to fill in when she couldn’t be around. Fortunately, Hebner’s escape attempts never included wandering at night, so when the house powered down in the evening, Hayes Bock would make sure her mom was in bed, and then lock up for the night. Last January, she was able to rearrange her work schedule to accommodate caregiving. Today she works the night shift, Thursday through Sunday, in her job as a machine operator at a nearby food plant. While she’s working at the plant, her husband takes over caregiving. Hayes Bock gets home from work around 7 a.m. and sleeps until around 11. She’ll check on her mom and feed her if she’s awake. “In these later stages, they sleep a lot. Then I go back to sleep until 3:30 or so and do it all over,” she says.
Although Hebner is far from catatonic, she sits in a chair all day having conversations with people who aren’t there. Now, she only takes her walker on laps around the house when she’s hungry, sometimes putting cookies in her pocket. Hayes Bock worries about her mom’s nutrition and adds Ensure to her cereal to boost the vitamin count. She recently asked the doctor what comes next, and they talked about difficulty swallowing. She dreads the day her mom stops eating completely.
“If I get two meals in her, and pants on her, it’s a good day,” Hayes Bock says. “We decided it was laugh or scream. You have to laugh or you’ll lose your mind.”
Caregivers all over the world could tell the same stories. “With dementia, grief and loss begins before death and doesn’t stop afterwards,” says Karen Moss, PhD, an assistant professor at Ohio State University’s colleges of Nursing and Medicine, and a nurse-scientist who studies dementia in family caregivers. Moss’s work focuses on the anxiety and stress of caregiving, pain, and the end of life of older adults who have dementia. Moss specifically focuses on Black adults with dementia and their family caregivers.
Dementia and Alzheimer’s are extremely difficult conditions for the person going through the disease, especially early on as they struggle to figure out what’s wrong, says Moss. And family caregivers struggle too.
For starters, caregivers have to cope with changes brought on by normal physical aging – like decreased mobility and worsening vision – as well as the anguish of watching the person they love slowly disappear. As they fade, caregivers are left with heavy decisions to make – alone. If, say, a loved one falls, caregivers need to know whether to call the doctor or head to the ER.
In these scenarios, financial concerns loom large. Was that fall bad enough to head to the ER, which is so much more expensive than urgent care? What if it was the third one in a month?
As the disease gets worse and people with dementia need more and more help with everyday tasks like balancing the checkbook and paying bills, caregivers need to shift how they manage jobs and family obligations, all the while struggling to create a life that’s calm and happy, says Jason Karlawish, MD, a geriatrician and professor of medicine at the University of Pennsylvania Perelman School of Medicine in Philadelphia.
There is no cure for Alzheimer’s disease. Three drug trials are awaiting the FDA’s review, but of the more than 100 that have come before, none have had much success. But advocates would settle for less than a cure.
Even the ability to slow down the disease’s symptoms would be life-changing for many. “I think that’s a vision we have to have in this disease,” Karlawish says. “This idea that we are going to drug our way out of Alzheimer’s and turn it into polio, where all you need to do is get the vaccine and you’re done, is not a sensible position for science policy or for public policy.”
Even if a drug manages to affect the disease’s course, the treatment likely won’t be simple – and may need to begin years before symptoms even appear, says Eric McDade, DO, a neurologist at Washington University School of Medicine in St. Louis and principal investigator on a global clinical trial in a group of patients with dominantly inherited Alzheimer’s disease. “I hesitate to get too excited just knowing how difficult these trials are and how surprised we’ve been in the past,” he says
Moss finds that both current and former caregivers are eager volunteers for clinical trials – especially her projects covering caregiver stress. They also volunteer what information they can on how the disease is affecting their loved ones. “With Alzheimer’s disease and other related dementias or any disease for which there is no cure, people want to feel that there’s a saving grace; many of us want to know there’s something that can help turn around the disease for their loved one.”
And they come prepared with questions of their own.
“Caregivers are super savvy individuals,” she says. “When we approach them for research, they want to know what we are going to do with this information. They ask, ‘How am I going to get the results?’ They want to know, and they deserve to know.”
Susan Hersey Guilmain learned about her husband’s dementia when she signed them both up for a clinical trial at nearby Butler Hospital. The trial was supposed to test whether a Mediterranean diet could stave off cognitive decline. Neither qualified for the trial. Hersey Guilmain’s diet was already too close to what was being tested, and medical tests showed that her husband Roger already had significant cognitive impairment.
At first, he didn’t believe the tests. But the team at the hospital reassured him that they could help. “They put a positive vibe on it, so he was OK with going to his doctor and getting further testing and treatment options,” says Hersey Guilmain.
The Butler team eliminated over-the-counter sleep medications, including Tylenol PM and the three Benadryl tablets he was taking every night. They changed his diet and upped his exercise. Roger started to show improvement. He’s also taking Aricept and the herb Bacopa monnieri. A few months ago, he joined an early clinical trial testing whether Emtriva, an HIV drug that reduces inflammation, is safe for people with mild to moderate Alzheimer’s.
He was diagnosed a little over a year ago, and he’s still at the stage that Hersey Guilmain, a retired occupational therapist in Smithfield, RI, calls “the funny stuff.” He gets confused; he thought their Dunkin’ Donuts moved, and that someone had changed the buttons around on the microwave. “He actually said, ‘Who did this?’” says Hersey Guilmain.
She adds moments of calm to their days by making certain they take walks in the sunshine, around the neighborhood or a nearby lake. They also enjoy a cocktail hour every day at 5, sipping either wine or cider. The TV is off and they spend half an hour or so connecting with one another.
“Right now, it’s not as intense as it can or will be,” she says. “It’s stuff I can laugh at.” Sometimes, Hersey Guilmain gets frustrated when her husband is uncooperative about brushing his teeth, or when he tells a story that didn’t happen. She reminds herself that this is a disease, and she chooses to make jokes, rather than getting into an argument.
“It’s not an argument I can win,” she says.
After caring for an aunt and her mother, both of whom died with late-stage dementia, Hersey Guilmain knows what’s ahead. Even with the spectacular progress Karlawish says the Alzheimer’s field has made in less than 20 years, there’s still very little help for caregivers.
Hersey Guilmain says she fights every day to stay positive. “I am not going to think ahead to ‘what if,’ because I can’t,” she says. “I am just doing today, and today is good.”