The Emotional and Physical Toll of Caregiving
By the time Rene makes her morning coffee, she’s already answered the same question from her husband five times. Once her best friend and life partner, Rene’s husband no longer carries the spark of conversation. Alzheimer’s has stolen that. Now, she walks through her days in repetitive caregiving silence.
“There’s no substance to our conversations anymore,” she says. “He repeats the same things over and over. I feel like I’m deteriorating intellectually.”
Rene is one of more than 53 million unpaid family caregivers in the U.S. Many, like her, entered the role suddenly – without training or support. Most do so out of love. All do so under strain.
“I’ve lost my partner, my friend, and I’m alone,” she says quietly. “This isn’t a lifestyle I chose. And there is seemingly no way out. It’s not like a bad marriage where you can get a divorce. You feel trapped in a lifestyle you’d never choose and there is no good way out. The need for care just increases over time.
Because of long-term care insurance, Rene does have some financial help. But outside memory care is very expensive, and that is a real concern. “The situation in the very beginning alarmed me because I realized I was totally responsible for all the financial decisions that we previously shared. He wanted nothing to do with any financial decisions from the moment he was diagnosed.”
Carolyn, who left a career she loved to care for her husband with dementia, experienced the loss of both identity and stability. “I was hemorrhaging money, sleep, and strength,” she recalls. “He was active at night – so unpredictable. Even with long-term care insurance, it wasn’t enough.”
Eventually, Carolyn found someone to help twice a week for four hours. “That was it. That’s all the help I could get.”
Her husband passed away a year ago.
The Overwhelming Effects of Dual Caregiving
Freida, who cared for both her husband and her mother (from afar), carried the weight of two lives for years. “Honestly, I didn’t feel like I had a life,” she said. “Gene’s needs and my mom’s needs always came first.”
She stayed grounded through early morning quiet time, walks, and yoga. Still, she grieved the personal toll. “Every situation is different, but what helped me was to simplify, compartmentalize, and be kind to myself, knowing I was doing the best I could.”
Freida notes that there was little time to think about what was going on with herself emotionally and physically. “For most of my life I’ve taken time for meditation and quiet. I relied on that to keep me grounded and focused on the tasks at hand. I also took walks, practiced yoga, and included strength training when possible.”
Her mother and husband have since both passed.
A Husband’s Perspective
Jeff, a recent participant in our University of Denver Enrichment Program course Reframing Retirement, saw his caregiving story begin after the loss of his son and continued through his wife’s cancer diagnosis and the arrival of his 90-year-old mother-in-law.
“I became the cook, the laundry guy, the advocate,” he said. “I went from executive to domestic – driver, scheduler, comforter.”
Even with family support, the stress was immense.
“People would visit and leave a mess behind. They meant well, but it just added to the load.”
Jeff found solace in early morning prayer walks. “Every day I gave thanks for the love we had. I was constantly afraid of the future, but I tried to be present.”
When Work Doesn’t Work in Your Favor
Kathy, a healthcare consultant with a 60-hour-a-week job, supports her father with early dementia from a thousand miles away. Her stress, already high, spiked dramatically after her mother’s death.
“Caregiving has triggered my anxiety badly,” she says. “I’m grateful that my partner is also helping aging parents. We support each other.”
Kathy visits her father every few months and spends about 20 hours a week managing medical, legal, and financial matters remotely. After he was scammed out of $200,000 in the weeks after her mom’s funeral, Kathy scrambled to set up a power of attorney, recover what she could, and build safeguards.
Her advice to others includes:
- Set up legal protections early – power of attorney, estate plans
- Learn about elder scams and online protections
- Don’t neglect your own health
”For those who have parents in decline, try to have planning conversations about the inevitable as early as possible,” Kathy says. “I’ve tried to express to my father that assuming he’ll be independent until he dies and having no plan is the same as assuming that I will drop everything, move to Seattle, and become his full-time caregiver – and that isn’t fair to me, which he acknowledges, at least in theory. It may take a while for this to get through. I’m still working on it.”
She suggests being kind to yourself. “There might be days when you don’t want to get out of bed or leave the house due to anxiety or feeling overwhelmed and depressed. Just know that’s okay.”
“Find something that’s just for you, and schedule it into your life, allowing no flexibility,” she says. “For me, it’s weightlifting. I train three times a week with a team, and spend two hours a week doing mobility work with a coach. I don’t miss – they watch out for me and keep me sane.”
The Support Gap
Despite overwhelming need, caregivers often face the journey alone. Professional help is in short supply due to low wages, high turnover, and long waitlists.
“In my community, there wasn’t much help to be found,” said Carolyn. “I searched for months.”
Employers often claim to support flexibility, but as Kathy noted: “The only way to meet my goals is to work all the time. I’m technically allowed to take leave, but practically, it’s impossible.”
Where to Turn for Help
There are resources, although they’re often underutilized or underfunded:
- Area Agencies on Aging (meals, legal help, transportation)
- Respite care (temporary relief)
- Caregiver support groups (online and local)
- Technology tools (cameras, medication reminders, care apps)
- Veterans and Medicaid programs (some offer paid family caregiving)
Final Reflections from Wise Women
“Ask for help. Accept help. Don’t wait until you’re underwater,” Sally urges.
“I’m at ease knowing my husband’s last year was full of love and support,” Carolyn reflects. “I feel like I’m starting a new chapter. I’m stronger – so much stronger – than before.”
“Even though caregiving was all-consuming,” Freida adds, “I look back now with gratitude. I shared precious moments with Gene and my mom. Life is a gift and caregiving, when we let it, is a way of honoring that gift.”
Explore additional resources at Purposeful-Aging.org
If you’re navigating caregiving, or see it on the horizon, Barb Kreisman’s work continues beyond these pages.
Caregiver Wellness: Brain, Body & Boundaries happens Feb 5-8 at MEA’s Santa Fe campus. Barb co-leads this three-day intensive with neuroscientist Dr. Briony Catlow and senior-care advocate Dr. Paula Enrietto, translating the science of how caregiving impacts your brain and body into practical tools you can use right away.
You’ll understand what’s happening to you physiologically, build boundaries that hold, and connect with other caregivers who get it. Leave with a vetted roadmap of resources and next steps tailored to your situation.
Learn more about the workshop →