Season 1, Episode 9
The Caregiver Trending podcast features discussions on caregiving topics, interviews with thought leaders, and provides expert advice for caregivers from Homethrive’s in-house Care Guides. Episodes are available on Apple Podcasts, Spotify, or wherever you listen to podcasts.
National Family Caregivers Month is dedicated to the 53 million Americans acting as a caregiver for a loved one, so we decided to dedicate this episode to their stories. The stories on this episode are raw, emotional, and real submissions from listeners of the podcast.
Episode Transcript
Ali Habashi: Every November, we celebrate National Family Caregivers Month here at Homethrive. While we are always striving to make caregivers’ lives easier, this awareness month really drives home some of the most glaring facts about caregiving in the U.S.:
- More than 50 million Americans care for a spouse, elderly parent or relative, or child with a disability
- In 2023, the average time spent caregiving per week was 26 hours
- Behind planned retirement, caregiving is the top reason why people leave the workforce, with 650,000 lost jobs per year
- Due to caregivers exiting the workforce along with the added absenteeism issues for those who do not, the cost of caregiving on the U.S. adds up to nearly $44 billion a year
Despite these numbers going up year over year, this issue is only now starting to be talked about with regularity and concern. In the range of solutions that help tackle the need for more caregiving help, many companies have yet to consider caregiving benefits as part of their package.
Companies like ours give caregivers the support they need to find resources, schedule appointments and services, and navigate everything from a new diagnosis to a hospital stay to Medicare. In other words, they help caregivers keep their jobs, reduce their absenteeism, and give them back some time to spend with the loved one they are caring for.
Caregiving can take many forms, but it all takes dedication. On this episode of Caregiver Trending, we wanted to share some real stories from our listeners about their caregiving experiences.
Today, we leave the storytelling to you.
Trish Hobbs: The following story comes from Christine.
“For the last 3 years, I have been working with my siblings, and my father’s wife’s children to get both of them the care they need. She had several strokes and slowly became bedridden. Our father was caring for her basic needs, but gradually, we began to realize that he was unable to properly administer her medication, and was not getting his medication as prescribed, either.
We divided the duties: managing prescriptions was my younger sister’s job, getting the legal work done…directives, POAs, etc. was my job. My oldest sister is handling a property in Arizona and paying the taxes. My younger step-brother was managing Meals-on-Wheels, and my younger sister sent in a Grub Hub order once a week for a treat. We all split the costs evenly. Her children set up some respite care once a week and a home care worker to bathe her twice a week.
We made phone contact with her children, who initially wanted to put their mother in a care home nearer to them. She and our father were very adamant that they wanted to stay together, so her children relented, and said we could work together to make sure they were both properly cared for.
We did so, until she passed in late March of this year. Our father was having some mild dementia issues, and we created a rotation for him to stay with each family for 3 months. We live in Salt Lake City, Utah, Running Springs, CA, Huntington Beach, CA and Plymouth, MI. He spent 3 months with our step brother in the Salt Lake City area, and then came to Michigan. Our mother, who still works, and is totally independent, helped us out by bringing him on the flight with her.
About three weeks into the visit, my parents announced that they were getting back together, and would be getting married. They were married about 2 weeks later. Now, the challenge is mostly our mothers, though we will all be reassessing the needs as time goes along. The journey changes direction every now and again, but it goes on.”
Ali: This next submission comes from Sonja.
“I am a caregiver to my 9 year old daughter Sofia. She has Autism and her dad passed away in November 2022. Being an only parent to a child with special needs has been quite a journey. I can relate to a lot of caregivers since I myself am a caregiver and utilize things like respite care twice a month on a weekend day for a few hours.
I have learned about resources in my community and special needs family groups. We just attended a family carnival event this weekend at a group that is run through the local Chabad. They do fun events for the kids and families and it is all free. Sofia also goes to an amazing abilities center where she does respite twice a month for free through a grant for special needs families. She also did summer camp and holiday break camp there and it’s all no or low cost. It is very important as a caregiver to utilize these kinds of resources.
The word respite translates to a period of rest or relief. I can totally relate because as a caregiver and mom who works full time, there is never a moment to think about yourself. I love knowing she is having fun, socializing, playing outside, doing arts and crafts while I get a moment to relax or do something for myself for once. I pick up my daughter from school on my lunch break, or my wonderful Mom helps and picks her up.
I have a true passion for caregiving. My mother was a caregiver to a woman who lived independently until 106! Her son never had children and she had no children in her family so we would bring Sofia over to visit her as a baby. It would make her day. We still keep in touch with her son and he sends Sofia birthday and Christmas gifts every year. I also used to work as a caregiver, I just took my daughter to a birthday party for a sweet lady I used to care for who turned 86. Her family had a Mariachi band. It was such a great party and I am grateful to impact the families I worked with so much that they keep in touch. I teach my daughter, we have one hand to care for ourselves and the other hand to care for others.”
Trish: Next up is Kelly’s story.
“As a social worker, I have had the privilege of working with family caregivers for many years and I have always had a soft spot in my heart for those who selflessly give to their loved ones. I would like to share my story with you.
It started in January of 1976; my mom had her first child, my brother. When my mom went to the doctor for her six week check after having my brother she mentioned to the doctor that she had a lump in her belly … Well, that lump was me! So by the end of the year, my mom had 2 babies under a year old. My brother and I were referred to as “Irish Twins”, having been born in the same year. We were always close; we were in the same grade, had the same friend group, participated in the same extra-curricular activities, we even graduated together and shared a graduation party; we truly enjoyed hanging out together.
As young adults, distance separated us as my brother moved to Nashville; he would live there until his unexpected passing in April of 2022. On that fateful day, I received the notification of my brother’s passing and so it was up to me to call my mom (I live in Michigan and she was in Florida) and inform her that her only son, my only sibling, was gone. Little did I know that this would begin my role as a caregiver as I stepped in to handle everything related to my brother’s passing, including going to Nashville to clear out his apartment and gather his belongings. I will admit that I very much turned on my social worker mode to navigate through this time and ensure some sort of “protection” for my mom.
In May of 2022 my mom returned to Michigan like all true Florida snowbirds do; however, her mom who lived in Florida had taken a turn for the worse and had decided that she would enter an inpatient hospice house for her final days. I accompanied my mom to Florida and stayed by her side supporting her as she kept vigil by my grandmother’s bedside. Sadly, my mom lost her mom and son within two months of each other and I had lost my brother and grandmother. My mom returned to Michigan for the summer but she was fragile, having endured such great losses. And as always, my mom and step-dad returned to Florida in September.
My mom and I are close and we talk multiple times a day. My mom had begun to notice some changes in her memory and shared her concerns with me when we spoke. She kept saying “I don’t know what’s wrong with me.” I attributed this to the stress she had been under and her grief process. Until one morning in March of 2023, just a few months after having lost my grandmother and brother. I had spoken with my mom in the morning and she sounded a bit off but I couldn’t place my finger on it. I went about my day as I normally would.
That all changed when my husband came into my home office, which is rare; he sat down and told me that my step-dad called him and that my mom had a seizure and was in the hospital and that they had found a brain tumor. I told him he was wrong because I had just talked to my mom a couple of hours ago. Immediately, my mind went to the dark place and I began to panic thinking that I was going to lose my mom … the only blood relative I had left and I couldn’t face this thought.
Back to Florida I went, with a one way ticket not knowing how long I would be there. My husband and our, then 11 year old daughter took me to the airport not knowing when they would see me again. My mom had brain surgery to remove the tumor but her troubles were far from over. It was obvious that there were some cognitive changes and the surgeon was unsure if this would be permanent or not. A visiting nurse would come to the home and help my mom organize her medications … There were so many medications.
When I knew that she was ok, I flew back home and began my role as a long-distance caregiver. I would attend doctors appointments with my mom by phone or video, helping her to correctly remember and share information that was important. I managed my mom’s online portal for her health matters as she would often forget her password and get locked out. I handled all communications with her doctors and reminded her of appointments; which her husband would have to take her to since she has not been able to drive since her first seizure in March.
Last summer while my mom was back in Michigan and I was able to see for myself what was going on; I noticed that she was not managing her medications well and was either forgetting to take some medications or taking too much of other medications. I got my mom signed up for PillPack, a service which sends her medications in single dose packs so that all she has to do is open the pack and take her medications when they are due; eliminating any further medication errors. I manage the medications for her including communicating with her doctors when she needs refills or there are questions about medications so that my mom doesn’t have to worry about these things.
Like many unpaid family caregivers, it is sometimes difficult to recognize that I am, in fact, a caregiver as I see it as my turn to take care of my mom like she has always done for me. While I wish that my mom didn’t have the struggles she does, I realize how fortunate I am to still have her after all she has endured and I count it my privilege to be there for her when she needs me!
Ali: This next story comes from Liz.
My father was diagnosed with Alzheimer’s disease in 1992. In 1993, as my marriage was disintegrating, I and my 4-year-old son moved in with my parents, in the home where I grew up. My mother and I were caregivers for my father until his death in 1996, at age 75.
I say that when we first became a 3-generation household, my father was tying my son’s shoes. And after two years, my son was tying his grandfather’s shoes.
Being two adults sharing the caregiving role at home was a huge plus. Everyday I wondered how spouses caregiving on their own for their spouse do it alone. We could tag-team. We could both work outside of the home, which we needed to do for the income.
And even as my father’s capacities decreased, he was a crucial steady and loving presence for my son.
Trish: Marta sent us our next story.
“I never expected to become a caregiver for my parents. Throughout their lives, my parents prided themselves on their physical health. My mother was a vegetarian long before it was easy to find vegetarian options. My father swam several times a week, even after his heart attack. Active intellectuals with strong ties to their religion and larger community organizations, and financially stable, it seemed like they would saunter into old age without needing much assistance.
I also never expected to become a caregiver because I didn’t know what being a caregiver for aging parents in a different city would look like. We never lived near either set of my grandparents, and as they needed more assistance, my grandparents chose to live closer to other family members. My parents were always financially generous with their parents, but did not provide much in the way of logistical or emotional support. My parents and I have not lived in the same city for over 30 years.
But as they entered their late 70s and early 80s, it became clear that my parents did, in fact, need help. In his early 70s, my father was diagnosed with a neurological condition. As time progressed, the at first mild condition began to lead to dementia. After several falls, my sister and I became concerned about my parents living independently. It took several additional falls and hospitalizations before my parents were convinced to move into an assisted living residence.
For various reasons, my sister, who lives farther from my parents than I do, has less emotional, financial, and physical bandwidth than I have to help care for my parents. Although I encouraged my parents to move near me, they chose not to do so. So, I am not a day-to-day caretaker. I visit my parents approximately every six weeks. I come to my hometown and help them take care of tasks related to my childhood home, which they still own despite not living there. I help them deal with other tasks as well, including medical and financial appointments.
I have become a sounding board for my mother, helping her figure out how to arrange various services and situations and how to deal with the sadness and disorientation of living in a new place. I listen to all the gossip about the other residents. Pushing my father’s wheelchair, I take him for longer walks than my mother can and attempt to stir his memories.
As a working mother with an active life of my own, I cannot pretend that even this remote caregiving is easy. It takes a lot of time and emotional energy. I am beyond lucky that my parents are financially secure and do not rely on me for financial care. I am grateful to have the chance to do the caregiving I do. I am grateful for the opportunity to see what I might need to do to make this stage easier on my own children one day. I am grateful to be able to help my parents find a soft landing in their life.
Ali: Our final story for this episode comes from Vanessa.
“My caregiving experience began with suddenly having not one, but both of my parents to look after, in a matter of one day.
At the beginning of 2020, both of my parents had some health scares–small enough that they could still live independently, but big enough that my husband and I convinced them to downsize and move closer to us. Though we only lived twenty-five miles away from them, our area is non-travel-friendly, as it’s all connected by bridges and tunnels with tons o’ traffic. So, in the throes of the pandemic, in June 2020, my parents moved into a house three blocks down the street for rest assurance.
Perhaps the move was too hasty. Though my mom was the more eager of my parents to move, she seemed less settled by it all. Had I been too pushy? Did I back them into a corner of losing a piece of their independence by having them move closer to us?
But in May 2021, my dad suffered a fall from a ladder. Listen, I don’t even want to get into why he was on the ladder in the first place, but maybe it was a blessing in disguise because it led to a discovery of a 99% blockage of his carotid artery. He ended up having a stent put in that July.
My mom, while she had had a small health scare in January 2020 that helped precipitate the move, was overall quite healthy. She walked 2 to 3 miles per day, gardened, volunteered, kept active, and was a lifelong voracious reader. She was also my father’s caregiver for the roughly 957,000 health issues that he’s had throughout the last twenty-five years. She managed his appointments, and the notes for all of his medical things, and shepherded him through his surgeries. My dad was still healing from carotid artery surgery when…
My mom called me on October 10, 2021. With a soft voice, she whispered into the phone:
“I need some help.”
I asked, “Is it you, or is it Daddy?”
“It’s me.”
I flew down to their house. Her left side had gone numb. We called the EMTs, and the hospital confirmed my suspicions a few hours later: A brain bleed. She had a small one in January 2020, but this one was life-changing. In a moment, I had to change everything in my life. I had just started a new job three months prior and was traveling 150 miles round-trip to an office three times a week. With my mom having the stroke and having to go into skilled nursing for two months, and my dad’s appointments for health management post-surgery, all while the pandemic was still raging, I was not the nicest or best person to be around. I was short with everyone around me, I had to fight with doctors and nurses to get the care she needed (she was left neglected in the hospital after multiple seizures, and WOOO boy did I blow my lid on that entire medical team).
I constantly felt like I was pushing against the current. It was the loneliest I have ever felt. I was navigating not only the ineptitude and carelessness of medical professionals, but also my job, and the world around me. My boss would speak out of both sides of his mouth. In the same breath, he would say, “Please let us know how we can support you at this time. Now, when will you be returning to the office?” Mind you, I was keeping up fine with my work, somehow, yet he wanted me in the office, even though no one else was in. I digress.
Once my mom got out of rehab, it became crystal clear that I could not keep up with a full-time, in-office job 150 miles away. HR never offered me FMLA, no one offered a solution other than taking a demotion where I could work from home. I decided to take my chances and leave my job so that I could best support both of my parents, particularly my mom. Over that year, my mom had numerous TIAs and two more strokes, the final one being her end. She died on October 14, 2022. My father never expected to be a widower. We all thought he would be the first to go, so we all had to adjust that expectation.
Over the last two years, we have worked out a system. I did some part-time and freelance work for those couple of years, and returned to full-time in March 2024, with a new career focus on elderly advocacy through hospice marketing. I wanted to find a way to provide resources and information to people going through this that I didn’t have and help shepherd people in a way that I didn’t have.
I am still my dad’s caregiver and that role has expanded even more, as he lost his independence a few weeks ago when the DMV dictated that he was no longer safe to drive. It’s been a big change, but I am thankful to my husband for his help, my dad’s proximity so that I can help, and the transportation resources I have learned about. It’s not been easy finding these resources, and I would love to find a way to bridge the gap between the aging population and their caregiving children or loved ones.
The caregiving doesn’t end with my dad, or with my job. My husband and I supported his parents from afar (they live in Arizona). My father-in-law was diagnosed with pancreatic cancer late last year, and eleven days ago decided he was ready for hospice. I took that task on for them and interviewed hospice companies in their area, set up the consult times, and the like. Sadly, this evening he passed away. And I will find my way as I continue to navigate caregiving for my dad, provide support for my husband and his family.
The blessing in all this is that there are solutions out there, and my top goal is to provide solutions, resources, stories, and compassion to those in a similar boat.”
So, thank you so much to everyone who shared their story. For more information and tools to advocate for caregiving benefits in your workplace, visit homethrive.com/ergs.
Find out more ways to support your employee caregivers by learning about the benefits that can help. To receive caregiving benefit insights delivered straight to your inbox, sign up for our weekly newsletter.