For a while, Barbara Hebner grabs all the things she finds, collects them in her bathrobe, straps the whole thing onto her treadmill and heads for the door. She wants to go home.
Her first hacking attempt occurred in 2018. Hebner somehow skipped her vigilant daughter, Kimberly Hayes Bock, and made her way to the back gate, when a neighbor sounded the alarm. Hayes Bock, who was about to escape, was frightened–and as the fear faded, it made her feel guilty. She installed double-sided locks on the doors and a lock on the gate.
The escape phase lasted a few months. Once, during one episode, her mother hit Hayes Bock’s treadmill, and hit her hard.
Now, 5 years later, Hebner is still trying to open the doors, but more often and with less determination. About 6 months ago, her thinking skills worsened. She can no longer put logic sentences together, says Hayes Bock, of Joplin, Missouri.
Day after day, year after year, the hardships of caregivers, both large and small, take their toll. Giving care to a parent is a kind of role reversal: a darkening mirror of the upbringing and support that once went the other way.
Hayes Book status is not uncommon. she is one from 16 million Caregivers are unpaid in the US but here, there is no strength in numbers. The job itself is so aloof that many struggle on their own.
With a young child, even on difficult days, it is easy to imagine happy milestones: the first steps, or the first day of school. Caregivers do not see a bright future for their loved ones – only refuse. Alzheimer’s disease and other types of dementia erode your dignity and independence as caregivers figure out how to manage jobs, family obligations, guilt and permanent restlessness.
There are moments of bliss, such as a smile of confession, or a squeeze of the hand. There are also flashes of humor. Hayes Book remembers the time she was looking for her mother’s 40-ounce purple bottle, and found it on a table wearing a lampshade. The lamp was in the trash. “We are struggling because they have changed,” she says. “Moments of grace come when we realize that much suffering is ours, as caregivers.”
Hebner moved in with Hayes Bock in 2016, shortly after she was diagnosed with mild cognitive impairment. They tried memantine And the Aricept, Medications for moderate to severe Alzheimer’s disease that can help with confusion and memory loss. Neither drug helped, and the side effects were unbearable.
Today, at the age of 80, Hebner needs 24/7 care. She no longer recognizes her daughter, whom she calls “Barbara” instead of “Mom” sometimes, because Hebner no longer responds to “Mom” or “Mom.” She needs help showering, but is still able to get dressed, even if she ends up with mismatched clothes and her shoes on the wrong foot. Her habit of ripping her crotch and then ripping it off at once depends on $450 from the plumber.
Hayes Bock recently posted to a caregiver support group on Facebook that she doesn’t know what’s worse: finding poo on the floor, or properly preparing to clean it up, because such a mess happens quite often. Hayes Book has learned to laugh at her. “It’s the ugly, tough situations that bring you patience you never knew you had before. It’s those moments when preserving their dignity becomes a top priority,” she says. “As caregivers, we are viewed like rock stars. If she can get past this and with that dignity intact, whether she knows it or not, that would be a win. There’s no rock star here, just a daughter trying to do what my mom does right.”
Over the years, Hayes Bock has relied on paid caregivers to fill it in when you’re not around. Fortunately, Hebner’s escape attempts did not include wandering at night, so when the house shutdown in the evening, Hayes Bock makes sure her mother was in bed, then shuts down for the night. This past January, she was able to rearrange her work schedule to accommodate caregiving. Today she works the night shift, Thursday through Sunday, at her job as a machine operator at a nearby food factory. While she works in the factory, her husband takes care of her. Hayes Bock comes home from work around 7 a.m. and sleeps until about 11. She will check her mother and feed her if she is 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 again.
Although Hebner is far from immobilized, she sits in a chair all day and has conversations with people who aren’t there. Now, she only takes her walk around the house when she’s hungry, sometimes even putting cookies in her pocket. Hayes Book worries about her mother’s nutrition and adds a guarantee to her pills to boost her multivitamin count. I recently asked the doctor what was coming next, and they talked about the difficulty in swallowing. She dreads the day her mother will stop eating completely.
“If you get two meals in it, and you put on pants, that’s a good day,” Hayes Bock says. “We decided she was laughing or screaming. You have to laugh or you will lose your mind.”
Caregivers around the world can tell the same stories. “With dementia, grief and loss begins before death and does not stop afterward,” says Karen Moss, an assistant professor in the Ohio State University Colleges of Nursing and Medicine and a nurse scientist who studies dementia in family caregivers. Moss’ work focuses on the anxiety and stress of caregiving, pain, and the end of life for older adults with dementia. Moss specifically focuses on black adults with dementia and the caregivers in their families.
Dementia and Alzheimer’s disease are very difficult conditions for someone going through the disease, especially early on as they struggle to figure out what’s wrong, Moss says. Family caregivers are also suffering.
For starters, caregivers have to deal with the changes that occur due to normal physical aging — such as reduced mobility and deteriorating vision — as well as the agony of watching the person they love slowly disappear. As it fades, caregivers are left with difficult decisions to make — on their own. If a loved one has fallen, for example, caregivers need to know if they should call a doctor or head to the emergency room.
In these scenarios, financial concerns loom large. Was it bad enough to head to the emergency room, which is much more expensive than urgent care? What if it was the third in a month?
As the disease worsens and people with dementia need more and more help with daily tasks such as balancing the checkbook and paying bills, caregivers need to change how they manage jobs and family obligations, while they struggle to create a calm, happy life, says Jason Karlawich, MD. 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 FDA review, but of the more than 100 trials that have been done before, none have been very successful. But proponents will accept less than a cure.
Even the ability to slow the symptoms of the disease will change the lives of many. “I think that’s a vision we should have in this disease,” Karlawich says. “This idea that we’re going to get rid of Alzheimer’s and turn it into polio, where all you have to do is get vaccinated and you’re done, is not a reasonable science policy or public policy stance.”
Even if the drug works to influence the course of the disease, treatment likely isn’t simple — and may need to start years before symptoms appear, says Eric McDaid, MD, a neurologist at Washington University School of Medicine in St. Louis and lead investigator of a global clinical trial in a group of Patients with autosomal dominant Alzheimer’s disease. “I hesitate to get too excited just to know how difficult these experiences have been and how surprising we have been in the past,” he says.
Moss finds that both current and former caregivers are enthusiastic volunteers for clinical trials—particularly her projects that cover caregiver stress. They also volunteer the information they can get about how the disease is affecting their loved ones. “With Alzheimer’s disease and related dementia or any disease for which there is no cure, people want to feel that there is a saving grace; many of us want to know that there is something that can help overcome the disease for their loved ones.”
They come prepared with questions of their own.
“The caregivers are very smart individuals,” she says. “When we reach out to them for research, they want to know what we’re going to do with this information. They ask, ‘How am I going to get results?’ They want to know, and they deserve to know.”
Susan Hersey Gilmain learned of her husband’s dementia when she signed them for a clinical trial at nearby Butler Hospital. The trial was supposed to test whether a Mediterranean diet could prevent cognitive decline. No one is qualified to stand trial. Hersey Gilmin’s diet was very close to what was tested, and medical tests showed that her husband, Roger, did indeed suffer from significant cognitive impairment.
At first, he did not believe the tests. But the team at the hospital reassured him that he could help. “They rated it positive, so he was OK to go see his doctor and get more tests and treatment options,” Hersey Guilmain says.
Butler’s team got rid of the over-the-counter sleep medications, including Tylenol PM and the three Benadryl pills he was taking every night. They changed his diet and increased his exercise. Roger is starting to show improvement. It also takes Aricept and grass Bacopa monnieri. A few months ago, joined early Clinical trial Test whether Emtriva, and HIV drug They reduce inflammation, and are safe for people with mild to moderate Alzheimer’s disease.
He was diagnosed a little over a year ago, and he’s still at the stage that Hersey Gilman, a retired occupational therapist in Smithfield, Rhode Island, calls “the funny stuff.” Confused he thought their Dunkin’ Donuts had moved, and that someone had changed the buttons in the microwave. “He actually said, ‘Who did this?’ Hersey Gilmin says.
She adds moments of calm to their days by making sure they take a walk in the sun, around the neighborhood or a nearby lake. They also enjoy a cocktail hour every day at 5, sipping wine or cider. The TV is off and they spend half an hour or so calling each other.
“Right now, the situation is not as severe as it could or will be,” she says. “They are things I can laugh at.” Sometimes, Hersey Gilmain 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 get into an argument.
“It’s not an argument I can win,” she says.
After taking care of her aunt and mother, who both died of late-stage dementia, Hersey Gilmin knows what’s to come. Even with the amazing progress that the field of Alzheimer’s disease says has made in less than 20 years, there is still very little help for caregivers.
Hersey Gilmain says she fights every day to stay positive. “I won’t pre-think ‘what if, because I can’t,'” she says. “I’m just doing it today, and today is good.”