National Family Caregivers Month, celebrated each November, is a time to recognize and honor the estimated 53 million people who support the health, quality of life and independence of a loved one due to aging, disability or chronic health conditions. We wish to recognize everyone who supports their family members, including the 2.7 million grandparents who care for children.1
Caregivers play a critical role in helping support long-term care for an older loved one or an individual with a disability. Family caregivers provide many resources that may support the health, wellbeing and financial needs of those they love.
Michelle Martin, Senior Policy Director of Complex Care at UnitedHealthcare Community & State is one of the many team members with caregiving experience. As she reflects on National Family Caregiver Month, she shares her deeply personal story here.
In November of 2014, I was visiting Chicago with my husband and got a call from my mom. Her brother died. It was unfortunate but not unexpected. The hardest part was that my uncle had been estranged from the family for some time and things felt…unfinished. On the way back to Washington, D.C., my husband and I visited my papa (my mom’s dad). We had a great visit, although my papa mentioned my uncle’s passing, and I could see that he had some feelings that would take time to process.
Flash forward two weeks. I had just started a new job. My papa had undergone surgery that was a success, but he wasn’t waking up as expected. My dad called to tell me that papa had a very significant seizure. My mom was there to see it because she was a clerk on the floor of the hospital – papa’s room was three doors from my mom’s desk. Oh no. Should I come home?
And this began two months of flying and driving back to Michigan to stay in my papa’s hospital room because my mom wouldn’t leave his side unless someone was there to stay with him. I asked my new boss if I should resign given how hectic the situation had become. My boss was grace personified. If I was willing to work from Michigan, from the hospital, from wherever, they were willing to accommodate my needs. So, I traveled back as much as I could. I slept on the fold out chair in my papa’s room and I got to know the nurses and the incredible kindness they offered. My going to Michigan was the only way my mom would leave the hospital to get some rest. Otherwise, she would work the day, spend the night, take a shower, and work the day again.
Eventually, it became clear that my papa would not wake up and his organs were failing. The family gathered. Dozens of people packed into my grandparents’ living and dining rooms where I repeated what the doctors told us, managing to hold it together until the very end. My papa wanted to be at home, we all knew that, and we should honor his wishes. The arrangements were made, papa came home, and was never alone until he passed peacefully a couple of days later.
A couple of months later, on April 2, 2015, my cousin called. It was my papa’s birthday, our first without him. I assumed she was calling to see how I was doing. I answered in a I-promise-I’m-OK sort of way. My cousin sounded surprised, confused. She was calling to tell me that our uncle died earlier that day. Shock. Does my mom know? He was 51 years old.
I called my mom and asked if she heard this horrible news. She was sure I had gotten it wrong and hung up to make some calls. Confusion. She called me back and I’ll never forget the sound of my mom sobbing and her words: I can’t take anymore.
A few months later, my aunt, who is my mom’s oldest sister, was diagnosed with cancer. My aunt’s journey was months long, supported by her children. She passed peacefully, surrounded by her children and several nieces and nephews. At her funeral, my dad was listening to a conversation about those final days in the hospital and later said to me “Please don’t sit and watch me die.” I’m sure I rolled my eyes in a “Whatever, dad, that’s not happening for a long time” sort of way. Two weeks later, he was diagnosed with non-small cell lung cancer that had metastasized to his brain.
How could I go through this again? More importantly—how will my mom get through this? She’s had no break in taking of care of people—in between all of the things mentioned above, she cared for her mother-in-law after major surgery and still worked at that desk in the hospital, and now the most important person in her life is gravely ill. My mom was a R O C K S T A R. She didn’t miss an appointment, my dad wanted for nothing and had incomparable care at home. My dad was also a rockstar. He continued working too many hours each day as he had done for decades and continued to make decadent meals for guests. It’s very important to note that, amid this journey, my sister moved into the house. My sister had a full-time job but provided a great deal of support outside of work. My brother visited often and would help our dad with work and other house projects. I went back to Michigan as often as I could, but it was like a well-oiled machine. I would ask what I could do and the answer was always the same—just spend time with us.
My mom was one of millions of unpaid family caregivers who would not have it any other way. As my dad’s cancer progressed and he needed more help, my mom didn’t sleep, did laundry around the clock and did every single thing to make sure my dad was as healthy and comfortable as possible. I begged my mom to accept help from an agency so that she could focus on spending time with her husband and not on trivial things like laundry. One time she almost accepted the offer—I was so relieved and immediately called a friend to get an aide out to the house. But my mom changed her mind.
When my dad went into the hospital for the final time my mom did not leave his side—I couldn’t even convince her to go outside for some fresh air. After a weekend of family coming and going from the hospital, my dad died on Monday, March 20, 2017, with only my mom by his side. His wish was honored. It was 51 weeks after my aunt died.
What is always true is that caregivers are heroes. The people who take care of their loved ones, very often sacrificing important parts of their own lives, are the unsung heroes of our health care system. But for the people who receive the care, those friend and family caregivers are priceless.
In my role at UnitedHealthcare Community & State, I have the honor of working with an incredible group of people who are so passionate about our work. We talk often about how important it is to honor caregivers, offer supports that can help caregivers on their journey, and recognize that no two journeys are the same. It is such a privilege to be surrounded by people who collectively work to make life easier for our members and to lift up all caregivers.
To all the caregivers—the spouses, the children, the parents, the grandparents, the siblings, the friends—who make sure their loved one has the opportunity to thrive living on their own terms: thank you. Thank you is never enough. We are so grateful for each and every one of you.
To my mom, I don’t know how you did it, but I’m so grateful that you did. Dad’s last year was remarkable, thanks to you.
DHHS releases strategy to support family caregivers
It is estimated that family caregivers deliver the equivalent of $470 billion in paid care.1 Lost income due to time spent caregiving is estimated to be a staggering $522 billion each year.1 This has intensified other issues for family caregivers who often are stretched thin. Family caregivers, particularly those who care for hard-to-reach, underserved and/or marginalized communities, often lack resources to maintain their own health, wellbeing, and financial security while providing crucial support for others.
To address these challenges family caregivers face, the U.S. Department of Health and Human Services recently released the 2022 National Strategy to Support Family Caregivers. It highlights nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers.
As the reliance on family caregivers increases, it is more important than ever to ensure that they are supported with tools and resources. When family caregivers thrive, the people they care for can too.