Family Caregiving: A View From the Inside

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.

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!”

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. 

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.

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.

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.