Allen Johnson, 72, is a renaissance man. A mechanical engineer by trade, he’s gifted playing both the piano and organ and he learned to tune his own piano simply because he could. He’s a stargazer who loves to break out a huge telescope so folks can stop by to see the latest heavenly happening.
His wife Cindy says he can fix anything mechanical or electronic and he loves to garden. And before December, he was the “picture of perfect health.”
That’s when a huge seizure — the first he’d ever had — changed everything for Johnson. At nearby Jordan Valley Hospital, after so many tests, he learned he has a malignant brain tumor called a glioblastoma and despite early hopes that it would be completely removable, that proved not to be the case when surgeons did a craniotomy on Dec. 16.
They took out what they could of the malignancy, but found part of the tumor was entangled with brain tissue, which launched him into an unfamiliar and aggressive regimen of radiation and oral chemotherapy. He’s been warned, with great kindness and compassion, that he will not recover from this cancer, though all the procedures quite likely bought him some time.
The door to a new world and new identity has opened for the couple, who have been married for 26 years and have nine now-grown children between them.
Cindy Johnson has become one of America’s 53 million unpaid family caregivers. Allen Johnson is learning to accept help for tasks that were always so easy for him as he becomes increasingly weak.
And together they have found what so many others know: When it comes to caregiving, you can’t do it all alone.
Early preparation helps
“People who don’t use any outside help are going to fail,” predicts Jeremy Cunningham, public policy director of the Alzheimer’s Association Utah Chapter, who likens caregiving to the advice given on airplanes: Put your own oxygen mask on before helping someone else don theirs. He notes that caregivers who take on the task alone around the clock have a distressingly high risk — 36% to 64% — of dying before the person for whom they’re providing care. It can be a task fraught with challenges.
Cunningham divides what people should do to prepare for assuming a caregiving role into four broad categories that are not disease-specific:
- Educate yourself. Carve out time to study the particular disease process or injury, what to expect and how to manage it.
- Plan ahead. When it’s possible — and it often is not — have discussions about what someone who needs a caregiver wants to have done when the time comes. It’s helpful to have those conversations before you ever know you need them. But if you have a diagnosis or an injury or that’s otherwise impossible, those conversations become a do-it-now priority.
- Know what resources are available. That ranges from learning about free county-run programs and community, hospital or even online support groups to looking into what’s out there should you one day need residential care. Even if you think you can go it alone, finding out what’s available could be very helpful later.
- Take care of yourself, because otherwise “it will all come crashing down,” said Cunningham.
Where are the helpers?
Families can become caregivers at any time, with little warning. Someone becomes ill, develops a debilitating disease, suffers traumatic brain injury in a crash. For Lindsay and Paula Hedin, of Plain City, caregiving was born alongside their second-oldest child, Mason. Three months premature, the baby weighed just over 2 pounds.
Mason at 32 is not terribly different from Mason as a toddler. His mental development is akin to that of a 4-year-old, although he’s much bigger physically and has gone through the maturation process. But he still wears a diaper and he’s nonverbal. He is also, thankfully, most often cheerful, though he’s sometimes stubborn and like all little kids he doesn’t always do what he’s supposed to, his dad said.
So the couple have been caregivers for more than three decades, Hedin said, and without some outside help, they would have been ground to dust by the process, which can be very challenging.
In school, Mason had an education plan and services. When he turned 18, his parents had to go to court to become his guardians, as he was nominally an adult, though he absolutely could not take care of himself or make adult decisions. His disabilities are severe enough that they must even watch him closely while he eats finger foods, lest he choke. He has no ability to use a fork or spoon.
Building a network of people is essential, whether it’s family, folks from church, neighbors, a medical or education team or all of the above. Caregiving benefits from a village approach.
Jane and Ren Willie, of Murray, have such a network as Ren faces the cognitive decline that comes with Alzheimer’s disease. While Jane is definitely his primary caregiver, they have a daughter-in-law who’s very helpful and neighbors who show up to say “hi” and keep him socially engaged, even if it’s just chatter while taking out and bringing in the garbage cans each Tuesday.
Recently, Jane and other family members went on her first vacation without Ren since he was diagnosed three years ago. They were gone more than a week and a home health respite worker took Ren, who’s 82, to the zoo and out to lunch and on other playful pursuits, ensuring he was OK and entertained. But before she left, his wife asked their neighbors to look out for him, too. And she admits she was a bit nervous.
Even little acts of kindness and service help greatly to relieve pressure, said Cunningham, who noted that besides being an exhausting task, the most devoted caregiver can’t be certain how he or she will react when a person is really sick, tired or cranky, with perhaps neurological changes. How do you plan to handle fear that may come with a hard diagnosis or the disease process itself? he asked.
Talk it out
Cindy and Allen Johnson have talked to each other in a deep, meaningful way about his diagnosis, what is likely to happen as his brain cancer progresses and what he does and does not want to occur.
Often, the need to be a caregiver occurs so abruptly or people are so reluctant to consider such an event that those conversations are not possible. That’s one reason Charise Jensen, who manages Salt Lake County’s Aging Services supported aging and caregiver programs, and Cunningham both suggest having those conversations early, when a potential dark event is just a possibility, not already a reality and the discussions can be less emotional.
“There’s so much we can do ahead of time,” Cunningham said.
For Cindy Johnson, the conversations about Allen’s future and what he does and doesn’t want have been a blessing.
“This last three months, we have talked more deeply about life, about our life together, about the past, the present, the future, than we have been ever able to,” she said.
Finding tangible help
The internet can be really helpful for those embarking on or already in a caregiver’s journey, Cunningham said. “Go to the various counties, like Salt Lake County aging’s website or the Salt Lake County health department site. Type in the disease and fill out the search field.” With Alzheimer’s, for instance, he suggests searching “help for family member Alzheimer’s Salt Lake City.” Resources will start popping up.
The Johnsons’ short and long-range plans are exactly the same: that Allen be as comfortable as possible at home.
Johnson and Willie are both still physically well enough to attend to their own personal needs. Cindy Johnson keeps track of her husband’s medications and makes sure he has food that appeals to him because his appetite is very poor. Food is also a challenge for Ren Willie, for a different reason. Left to his own devices, he happily eats chips and skips nutrition.
For both, memory is a big challenge. Johnson can still play the piano beautifully and it brings him great joy, his wife said, but the tumor in his left frontal lobe has weakened his memory and messed with his vocabulary, which is very frustrating for him.
Cindy Johnson said she will accept any help she can get as the caregiving tasks intensify. She’s looked into support groups. Her oldest son has been a caregiver for his wife for 20 years. She’s seen that over time the task gets bigger, not smaller. It is within the last five years that her son has allowed others to help him and she clearly sees the value of that.
Besides caregiving, she’s learning to handle household things she never did. Her husband took care of the finances and home repairs, for instance. Those tasks will pass to her.
She recently signed up for a virtual support group through Huntsman Cancer Center and admits she’s anxious to see what other people in caregiving roles have to say about what they’ve learned. She’s hungry for knowledge on how best to care for and help her husband.
Jensen, of Salt Lake County Aging Services, spends her days helping people find what they need to make what can be a daunting journey manageable.
She knows how important government programs and services are because she knows that among caregivers there’s a “really extreme” level of burnout, which can “happen very quickly within the early onset of caregiving; it’s difficult.”
Jensen said that “You don’t know until you know” is a truth for caregivers. “You’re stretched from every pore.” Caregiving can become a form of tunnel vision where “you’re just bouncing from one thing to the next thing to the next,” so additional support is more than helpful. It can be vital.
Caregivers without support may become neglectful or abusive. They can become rundown and depressed. They can actually die from the stress.
“We try really hard to help educate the caregiver on their journey and what that long-term plan is, as well as try to help people find a joy in caregiving,” which is easier to do with some support, she said.
Avoiding burnout
Caregivers benefit from peer-to-peer support. It’s important for caregivers to know they’re not alone and that what they feel, which changes a lot and covers a range of emotions, is perfectly normal.
Programs vary in who they cover, what they offer and how they operate. Salt Lake County Aging Services programs, for instance, serve those 18 and older caring for adults 60 and older who need help with at least two activities of daily living, an adult caring for someone of any age who has dementia, relatives but not parents age 55 and older caring for minor children and any relative age 55 and older caring for adults with disabilities.
Caregiving duties can vary from light to heavy, to really heavy. You might be filling someone’s prescriptions and doing their shopping or helping with meal prep. Or you might be responsible for bathing, meal prep, incontinence care and other things that are much more challenging and personal. Often it’s on a continuum that encompasses more as time passes and the condition of the person being cared for declines.
One of the big caregiving needs is for respite, whether it’s time away to do something else or some help with certain chores, like having someone come in to provide bathing or do light housekeeping or accessing adult day care.
It doesn’t have to be a program. Your sister could stay with mom for an afternoon two days a month so you as primary caregiver can just do something else.
Families ought to involve each other in contributing where possible, Jensen said. There are even caregiving classes aimed at helping families have those difficult conversations.
When everyone’s busy and getting help is hard, boiling it down to what each family member is willing to do and what they are not willing to do is a good idea, Jensen said. A man may say he’s never going to be willing to bathe his mom, but he will happily bring dinner and visit once or twice a week. That is tangible help.
Caregivers can have different roles based on circumstances and talents. For instance, Jensen says her brother is primary caregiver to a relative in a different state, but she goes over periodically and helps tame the hoarder tendencies of the person who needs a caregiver.
Don’t be afraid to ask for or give help
How do you spot caregiver burnout?
Jensen said losing interest is one sign — including losing interest in hobbies and socializing and other things that once brought joy.
One of the hardest things for caregivers is when others lose interest. After a medical crisis or diagnosis, other people often rally around, and then their involvement dwindles over time, which can leave a caregiver feeling lonely and stuck.
Jensen, like Cunningham, said to be specific in what you ask for and also in what you offer. “I need someone to come over while I go to the doctor,” a caregiver might say. “I am going to the grocery store Tuesday. Can I pick things up for you?” one might ask a caregiver.
Boosts for a caregiver don’t have to be a heavy, time-consuming lift. Local members of the Johnsons’ church covered their front door with loving messages written on paper hearts and children from the young children’s group, which is called Primary in The Church of Jesus Christ of Latter-day Saints, came by to sing for Allen. They love him and know him well; he’s played piano in Primary for years. The songs raised his spirits, which have dragged at times since his diagnosis.
Cindy Johnson sums up the love and tangible help simply: “We have been given things we didn’t even know we needed.”
Lindsay Hedin said they, too, have wonderful friends. Mason, like most children, has stubborn, rebellious moments and he’s physically big enough that he can be hard to manage, especially for his mom, Paula. When Mason’s balking and Lindsay is at work, one friend will Facetime and tell Mason to get in the car or do other things his mother asks. He always complies. Sometimes, strangers help out.
The Hedins have gathered tips from support groups and also felt less isolated. They’ve benefited from day programs so Lindsay can keep working. He’s often the primary caregiver now because Mason is a full-size man. And though Mason currently lives in a group home, they are still largely responsible for his care.
Tell Lindsay Hedin that caregivers can’t do it alone and he wholeheartedly agrees.
Tips for would-be helpers
Over years of covering caregiver stories, Deseret News has amassed examples of how people help. And it’s clear that an offer like “Let me know if I can do anything for you” is hollow: Many caregivers are so overwhelmed they don’t know what they need or are unwilling to ask.
Plus, it puts the burden on someone who’s already stressed.
Offer specific types of help, experts say.
For instance, a young couple where the father had Lou Gehrig’s disease spoke with wonder and gratitude of a woman who said to leave their dirty clothes in a basket on the porch and she’d do their laundry. She brought it back pristine, neatly folded and ready to go in the closet and drawers, saving the caregiver hours. Another friend decorated their yard for the holidays.
Cunningham’s partner is a great housekeeper and offers to help others with housework, which can be overwhelming when one is already buried under caregiving tasks.
Johnson’s family members, including his siblings, have rallied in different ways, from providing ready-to-dump-in-the-crockpot meals to making sure there’s fun afoot and things for Allen to look forward to.
Cunningham said to ask yourself, not the caregiver, how you can help based on your own talents and willingness.
Then do it.