Skip to content
 

Family Caregiving: A View From the Inside

An oral history of toil, toll — and loving devotion

janet lenius sitting with her mother germaine bruins in her mothers bedroom

JENN ACKERMAN

Janet Lenius, 57 (left), who provides ongoing care for her mother, Germaine Bruins, 89. Photo taken in her mother’s bedroom in Minneapolis.

En español

This very morning, in tens of millions of houses and apartments across the land, a spouse, child or friend will offer a steady hand to an older or infirm loved one, getting her dressed and fed, organizing pills, taking medical readings, setting him up for the day ahead. Later on, these caregivers might pay their loved one’s bills, deal with insurance claims, even do their shopping. Only when all that is handled can they live their own lives.

Special Report: Long-Term Care

jeanie olinger prepares her son chris for a nap

Michael Noble Jr.

Real Problems, Real Solutions to the Long-Term Care Crisis

Making at-home care work for America starts with tackling these 6 challenges
 

The Unique Challenges of Dementia Caregiving

Tips on how to manage such often-difficult care
 

Medicare, Medicaid and Long-Term Care

What the programs cover, and what they don’t
 

Long-Term Care: The Crisis Everyone Must Face

The system for helping people who can no longer care for themselves is broken and costly
 

How Technology Can Reduce the Need for Doctor Visits

New products allow for more treatment, testing and monitoring from home

 

Caregiver Resources & Tools

To reveal the full span of their devotion, challenge and frustration, AARP interviewed dozens of caregivers. Here’s a glimpse of life from their perspective. 

First signs

Bryan Kramer (52; he has been caring full-time for his now 54-year-old wife at home in Hemet, California, since May 2016): It was Friday the 13th and I got a call at work from my sister-in-law saying she couldn’t get into our house. I knew my wife was home so I rushed over. The door would only open about 2 inches because my wife was on the floor. Norma was alive, but she’d had a massive stroke — at the age of 48.

Janet Lenius (57; she has gradually taken on more caregiving responsibilities at home in Minneapolis as her 90-year-old mom’s health has declined): It wasn’t one thing; it was lots of things. Pneumonia, a heart condition, hospitalizations, mild cognitive impairment that kept getting worse. My mother’s car got stuck in a puddle one day and she opened the door and it flooded. That’s when she stopped driving completely. Her circle kept getting smaller. I had to step in.

Laura Crews (64; a hired aide helps by day, but she takes over caregiving after work for her husband, 67, who has frontotemporal dementia, at their home in the Seattle area): For a while after the diagnosis, Don didn’t need care every minute. But then I’d come home and find bizarre things. He broke a plate and tried to glue it with Gorilla Glue and got glue everywhere. Another day he took it upon himself to repair the deck by drilling in random screws. I was horrified. Don was a Boeing engineer but now he didn’t have any idea what he was doing. Somebody had to watch him.

Amy Goyer (61; AARP’s national family and caregiving expert, has been a caregiver since age 20 for various family members): I’m the youngest of four girls, I wasn’t married, I didn’t have children, I worked in health care. It was only natural that when an older relative needed help putting up a Christmas tree or fixing an old Victrola, I’d say, “I’ll just go check on things.”
 

amy goyer helping her mother don her shoes as her father watches

BETH PERKINS

Amy Goyer helps her mother don her shoes in 2013 as her father watches. Their caregiving costs eventually led to her bankruptcy.

In 2020, 26 percent more Americans are caring for someone with Alzheimer’s disease or dementia than in 2015.

Carol McCarrick (64; she has worked full-time while also caring for her husband, 70, at home in Kerrville, Texas, since 2013): Steve worked full-time, and on the side rode horses, took 150-mile bike rides, taught classes. One day he came in and just dropped from an aneurysm. We live in rural Texas. He had to be airlifted. If I wasn’t there, he would have died.

Karen Mason (62; she cares for her disabled adult daughter at home in Forrest City, Arkansas): Tasha, my daughter, was born with cerebral palsy. Taking care of her wasn’t a choice. It’s been my reality every day for 37 years.

Jeanie Olinger (61; she has overseen care full-time for her 37-year-old son in Longview, Texas, since his 2008 car accident. She also cared for her aunt at home and in a nursing home until her aunt’s death last September): I remember going for a walk as they bathed Chris at the hospital. He was 24 and had suffered brain injuries they said would be permanent. I realized this was going to be a long journey but I committed to it. In that instant, I let go of whatever I thought the future looked like. I came back and sat at his bedside and just said, “Bubba, I cannot walk this for you, but I can walk it with you.”

The confusion of care options

Laura Crews: I didn’t know what to do, honestly. I just started searching online for “caregiver.” You see all these choices: adult day care, in-home care, nursing facilities, assisted living, continuing care. You call places and everybody says, “Yes, yes, we can help.” But I never really felt good about these conversations. Everything felt like a sales pitch. Then my neighbor said, “Hey, I know this older lady who might help.” She’s been with us ever since.

More than one-quarter of American family caregivers in 2020 say they have difficulty coordinating care.

Karen Mason: You piece it together. Family, hired help, respite care. No way was I putting my daughter in a nursing home. When I was younger, I worked as a visiting nurse in some of the finest facilities money can buy. Chandeliers, baby grand pianos. But the care was deplorable. I had a patient dying of cancer. Queen Anne bedroom set and all that. But they didn’t change her sheets. She couldn’t feed herself but they’d leave food and walk away.

zander keig posing with his father ricardo on fathers day

COURTESY ZANDER KEIG

Zander Keig poses with his father, Ricardo, on Father’s Day in 2021, in Jacksonville, Florida.

Zander Keig (55; he is a Latino trans man and Coast Guard veteran caring for his Marine Corps veteran father, who’s 81, in Orlando, Florida): I got Dad enrolled in the geriatric clinic at the local VA but the wait was seven months to get him into adult day care. He moved in with my wife and me but at a certain point, we noticed things — like Dad no longer understood how to operate the microwave and couldn’t be left alone all day. We found an inpatient facility nearby with six bedrooms. That looked great but it was $3,000 a month and dad was only getting $1,740 a month from Social Security. We simply couldn’t afford it. We ended up having to put him in a much larger independent-plus program at an assisted living facility with hundreds of people about 2½ hours away.

Rachel Hiles (35; she lives in Kansas City, Missouri, and cared for her grandmother until she died in January at age 85): We never had a conversation before any of this. I wish we had. My single mom passed away. I’m an only child and my grandma’s an only child so my grandma’s care fell to me. Right before COVID, she got pneumonia and went into the hospital. There was this defining moment when I had two choices: Take her home or send her to rehab. Neither was perfect. But I knew if she went to rehab, she’d probably end up staying there.

Steve Cogburn (69; he cared for his wife, who had heart disease and dementia, for eight years at home and in hospitals around Holyoke, Colorado, until her death in 2020): In our rural area there was no home health care. Zero. The closest was about 50 miles away. They would send an aide out twice a week for one hour a day to either bathe her or to wash clothes or clean the bathroom and that served no useful purpose to me whatsoever. It was all on me.

Carol McCarrick: You wouldn't believe how many people asked me in the beginning if I was going to stay with Steve, and I was, like, well, why wouldn’t I? Even his neurologist told me I should put him in a home. I just wasn’t going to do that. You think you know about love but you really don’t until you have to take care of somebody.

The financial maneuvering

Laura Crews: Right now we’re OK, but who knows? Don has a pension from Boeing, he’s getting Social Security, I’m still working. But most of my salary and then some goes to the lady who watches him during the day. I’ve had to buy a hospital bed, a lift chair. I pay an extraordinary amount for an expensive medication he needs. I wish we would have gotten long-term care insurance. My biggest worry is that if I can’t take care of Don and have to put him in a nursing home, that would whittle down our savings really fast.

Carol McCarrick: That little helicopter ride was $25,000. While Steve was in the ICU, I had to have the house completely redone. Doors enlarged, bathrooms overhauled, carpets up. It took all our savings, about $80,000, before he could even come home. Steve was eight months from full retirement at his state job and I begged them for full benefits, for his pension and all that, but they wouldn’t go for it. So, now, instead of thinking about retirement in a year, I’m working 10 hours a day as a social worker so I can pay for caretakers.

45 percent of U.S. caregivers today say they have suffered at least one financial impact.

Bryan Kramer: I’m not really retired because I’m only 52 but I do get paid — through IHSS, which is California’s In-Home Supportive Services. Well, technically, Norma gets paid to pay someone and that someone happens to be me.

Amy Goyer: People don’t understand the true cost of care. Daddy got veterans’ benefits, which was game-changing as far as helping with medical equipment, incontinence supplies, medications, ramps, home health aides. But with Alzheimer’s, the costs keep escalating as the condition worsens over time. I started using my credit card to cover whatever his budget couldn’t. That was a mistake. Unless you’re paying off your card each month, suddenly you’re paying 23 percent interest because your usable credit has gone up. There’s no way you can dig out. By the time Dad died, I had to declare bankruptcy.

Elois Wiggins (70; she is caring for her older sister with advanced Alzheimer’s 10 days each month on a rotation with other family members in Suffolk, Virginia): They say it takes a village and that’s true. The family all pulled together to help. We share costs. We get by. I retired in 2008 but still work part-time as a real estate agent. I honestly can’t think of anything better I can be doing with my salary. I don’t have children. Someone I love needs help. My life comes second.
 

elois wiggins left and her sister linda right help their sister vivian who has alzheimers

GREG KAHN

Elois Wiggins (left) and her sister Linda (right) help their sister Vivian, who has Alzheimer’s.

About half of African American caregivers feel they had no choice in taking on their role, but the majority say they find a sense of purpose or meaning as caregivers.

What it’s like

Jeanie Olinger: You know how the pandemic shut everything down and everybody stayed inside, ordering things off Amazon and watching TV, and mostly seeing the people you’re living with and taking a thousand precautions and only going out in true emergencies? That’s caregiving, COVID or no COVID! 

Bryan Kramer: It’s nonstop: physical therapy twice a week, what I call depression therapy every Friday. Norma has a neurologist, an eye doctor, a dentist, a podiatrist, an occupational therapist. I set an alarm for her 7 a.m. pills and her 7 p.m. pills and her 10 p.m. pills. It’s hard to take good care of yourself. I’ve gained about 50 pounds.

Janet Lenius: I bought Mom expensive hearing aids a couple months ago but they were stressful and confusing for her and she kept losing them. One day I spent about eight hours searching, and they were hiding in plain sight on a ring holder. I ended up returning them because I couldn’t take the anxiety of worrying about something worth two diamond rings that Mom wasn’t using anyway.

Karen Mason: Every day it’s the same routine: You get her up, wash, diaper, medicate, breakfast, lunch, dinner, laundry, in and out of the wheelchair. My daughter is 230 pounds. I’m on disability. I’ve had two failed back surgeries. Every joint in my body hurts but you push that aside.

Sarah Childs (57; she is caring for her mother, 81, who lives nearby in Baltimore): You need to become an advocate for everything. My mother’s jaw got dislocated, just from talking, and the ER told me there was a no visitors policy because of coronavirus. That simply wasn’t true. The hospital’s website clearly outlined designated exceptions, and my mother met the criteria since she couldn’t talk and lives with paralysis from lumbar spinal stenosis. I fought tooth and nail to be by her side. I filed a formal complaint with the patient advocacy department, the ADA, the state health department and the health commissioner. Finally, the ball started rolling. The patient-support person said, “Well, you got what you wanted!” I corrected her by saying, “No, my mother got what she had a right to!”

In 2020, 23 percent of American caregivers say caregiving has made their own health worse.

Laura Crews: I feel robbed. Don was going to retire and we were going to travel. We were saving for a trip to Bora Bora. We were going to go out to dinner and take our grandchildren on trips. It’s not supposed to be this way, especially at our age. I’m angry.

Amy Goyer: You’re always thinking about falls. I slept outside my mother’s bedroom on a couch near the door. I gave her a bell to ring if she needed to go to the bathroom. One night she didn’t ring the bell and I didn’t hear her, and she fell and fractured her spine in two places. That led to 40 days in the hospital and I was there 24/7 for all but five of those days. Work was an anchor for me. I worked from the hospital room. But I still have PTSD from that experience.

Rachel Hiles: It can be challenging. I felt like I was constantly lying to Grandma. She’d tell me she’s late for work or school or church or some big party I know happened 50 years ago. I’d say, “Oh, Barbara Lynn, that party’s next Friday.” Sometimes it felt like I was living in a time warp.

Laura Crews: A lot of friends have dropped away, and that’s OK. I totally understand. Nobody wants to hang around with a person who drools or claps all the time. People don’t know how to react. I get that. But caregiving can be the loneliest job in the world.

Elois Wiggins: In some ways it becomes easier as the years go on. You get into routines, you figure out what to do, I’ve learned to trust, to let go of expectations. Giving is forgiving.

Coping strategies

Carol McCarrick: I think caretakers really need therapy. I have a therapist and it helps so much. You get a lot of guilty thoughts, there’s resentment, there’s frustration. My husband isn’t the same man he was. He’s just not, and I had to grieve him. Or sometimes I think, Maybe he would have been better off if he died if this is all there is to his life. You need to be able to say these things out loud, and you don’t want to be constantly complaining to your friends.

Jeanie Olinger: Prayer is a large part of it. There’s a line in Psalms that goes, “When my heart is overwhelmed lead me to the rock that is higher than I.” Faith helps. So does coffee. Lots of coffee.

Sarah Childs: I always force myself to remember that at one time my mother was able-bodied and she walked and danced and was a seamstress and an amazing cook. You always have to look beyond this degenerative disease. 

a photo of laura crews dancing with her husband don

COURTESY LAURA CREWS

Laura Crews with husband Don in 2013, prediagnosis: “Those were happy times!”

Laura Crews: You figure it out as you go. I’d never mowed the lawn before, I never understood cars or handiwork. A friend helped me change the car battery. I fix things around the house now. Toilet’s broken? Don’s certainly not gonna fix it. Come on, Google!

Zander Keig: As a trans man, there are some unique situations that come up for me around my father. As his memory fades, he may not remember that I transitioned 17 years ago and he might go, “Where’s my daughter?” I’ve been advised by a dementia care specialist not to explain but rather to ask Dad questions like, “Where does your daughter live? Tell me about her.”

Janet Lenius: I try not to get resentful. I tell myself Mom’s just a generous person. But it’s incredibly frustrating when I bring her Meals on Wheels and find later that she’s given her lunch to the cat that’s meowing piteously at her feet.

Bryan Kramer: I went to a chiropractor one time and she said, “Can I ask something personal? How do you do it?” I kinda broke down with a tear. I said, “I just do.” The truth is, I was in the Navy in the days before they took out the hazing. If I could become a shellback, I can take care of someone I love. 

Carol McCarrick: A few months ago I went back to my hometown for a school reunion. That was the first time I’ve really been away from him. The reunion was fine but just staying in a hotel by myself, being in the car, driving down the highway, blasting the Eagles, it was pure freedom.  

Glimmers of joy

Carol McCarrick: Believe it or not, we still laugh. We get snakes here in Texas. I’m terrified but I have to deal. I was picking one up with a stick when my husband rolled into the yard and fell out of his wheelchair. I’m out there like a superhero, flinging the snake over the fence and standing there thinking, Oh, thank God that’s gone! My husband’s flat on the ground going, “Hey, wait, what about me over here?” We both cracked up.

Bryan Kramer: If the temperature’s right, we’ll go kite flying. I secure the lines to Norma’s wheelchair and she just giggles when she sees the kites soaring overhead.

34 percent of American caregivers in 2020 were boomers.

Rachel Hiles: Every day, at least one good thing happened. If my grandma remembered my name, that was a good thing. Sometimes, it was just the sun shining or flowers opening up. You have to look for these micro moments.

Jeanie Olinger: My son’s more mobile now. I can put him in a van, take him on trails in his chair. I’ve even pushed him in a half-marathon.   

Sarah Childs: I post these jokes on AARP’s Caregiving Facebook page. Silly stuff, like, “The best five seconds of the week is having an empty laundry basket.” No matter what we’re going through, it helps to add a little cheer to the day.

Janet Lenius: Mom doesn’t have a TV but lately I’ve been getting DVDs out of the library and watching them with her on the laptop. Old comedies like The Carol Burnett Show and The Bowery Boys and even Steve Martin movies. She’s loving those. We both are. 

Steve Cogburn: We had a good friend from church who’d lost her husband about a year before Marcia died. I was afraid to ask anyone for help; I think a lot of men are. But sometimes she would insist on coming over. She’d sit with Marcia so I could get a break and she’d read every joke in the Reader’s Digest. Marcia told me she didn’t understand any of them but I could see how happy she was.   

Amy Goyer: When my parents went into a nursing facility, I began to play the piano during dinner and it would bring so much joy, not only to my mom and dad but to all the residents and to me. Singing those old songs — “In the Good Old Summer Time,” “Let Me Call You Sweetheart” — it really lit the place up. Even until the very end for my dad, at 94, music was how we connected.

Endings and beyond

Steven Cogburn: It’s hard, it’s exhausting, it wears on you emotionally, financially and every other way. Towards the end, I prayed to God to not make Marcia suffer anymore. He answered my prayers. She passed away in my arms on a Friday night. I was doing what I always did. At 8:30, I took her vitals, I was putting her pajamas on, turning down the bed and bringing her out into the living room so we could watch a half hour of the news. As I lifted her into her wheelchair, she said my name, and then she passed. To be there for her in that moment, it meant everything to me. Everything.

61 percent of today’s family caregivers work other jobs.

Amy Goyer: It’s interesting. When my father died some people immediately said, “You must be so relieved.” I was deeply offended by that. The truth is, I missed him. I still do. All the hospital stays, all the troubles, all the messes, you name it. Daddy was still wonderful to be with. He was my dad and the essence of him was still there. It wasn’t until he died that I realized how important taking care of him had been. It gave me purpose. Some people think caregiving is putting your life on hold. I disagree. Caregiving is putting the fullest part of yourself to work.

Bryan Kramer: I had a cast made of our hands. My hand is intertwined with Norma’s and we’re holding a rose. It gets me emotional looking at it. No matter how tough things get, Norma and I are still in this together.

Laura Crews: We’ll never see Bora Bora. I’ve made peace with that. We should have done it when we were younger. Don’t put things off. You don’t know what’s going to happen tomorrow.

Carol McCarrick: You do your best to stay well, to keep your sense of humor. But sooner or later, either you’re going to be taken care of or you’re going to take care of somebody. You better hope that if the time comes, there’s somebody in your life that will take care of you.

Rachel Hiles: It comes down to the golden rule, you know? I hope in the future when I’m my grandma’s age, I’ll have somebody like myself to take care of me. I believe that if you put good out it’ll come back to you and grow exponentially. I’m not opposed to nursing homes and facilities. I have nothing against them, but that’s just not what I want for my loved ones. You care for somebody the way you would truly want to be cared for. It’s just the right thing to do. 

David Hochman, a contributing editor to AARP The Magazine, is a journalist and features writer based in Los Angeles. His December 2020 AARP Bulletin story on nursing homes, “18 Weeks,” has won several national awards.

Need more personalized information?

Answer three quick caregiving questions.

Looks like you’ve started the questionnaire but didn’t finish.

Would you like to start over?

View your caregiving results