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Melissa Harris-Perry: You're listening to The Takeaway, I'm Melissa Harris-Perry. Baby boomers, born between 1946 and 1964, boomers constitute more than 20% of the total US population. Since their birth in the post-World War II period, they have been the engines driving trends from disposable diapers to pop culture, to social protest. Now, our nation faces the challenge of caring for our elderly boomers as they age.

Boomers are living longer than previous generations, but they had fewer children, and their daughters as well as their sons are far more likely to work full time and to be caring for their own dependence. The model of at-home care offered by adult children is less and less possible. The COVID-19 pandemic has exposed the depth of our nation's caregiving crisis.

The cost of caregiving for many families can be overwhelming, and families are often unaware that Medicare and other government assistance only cover a fraction of the expenses involved in long-term care. While Medicaid, the US poverty assistance program does cover these costs, it also requires a person to spend down all their assets and to have less than $2,000 in order to be eligible. Let's just look at the price tag of professional caretaking.

The median yearly cost of employing a home health aid full-time is around $50,000. It's even more if we're talking about nursing homes. On top of that, professional caregivers are undervalued in the health care system. Often facing tough working conditions, inadequate pay, and few benefits. The median hourly wage for home health and personal care aides is just $13 an hour.

Either for financial reasons or for other reasons, more and more Americans are trying to take on that role of unpaid caregiver by themselves. Finding ways to work their jobs, run their everyday lives, care for elderly family members, and it is taking a toll. We've been hearing from you about how many of you have navigated caregiving of the elders in your life, and what that experience has been like for you and for your loved one.

Janet: Hi, this is Janet and I am calling from Charlotte, North Carolina. I had to take care of my mom when she was dying of cancer. I worked full-time, had a young preschooler at the time. I was a single mom, so I had hired somebody to take care of her during the day while I worked, and when I came home, I took care of her all night. I had to.

I ended up hiring somebody to take care of her using her savings because at that point, she thought she was saving it for us, but there was no need. She needed to be cared for. It was very draining, tiring, but I wouldn't have it any other way, but it was a lot.

Ifaq Holiday Riss: Hi, my name is Ifaq Holiday Riss, I live in Las Vegas, Nevada. It is quite difficult to take care of an elderly person. In my case, I take care of my mother who's 82 years old, and she is home-bound. I find that it's very difficult even to get funding to help take care of her in various resources because the threshold for what a person could make are so low it makes it difficult to get financial help for the caregiver to stay home, a person like myself as well.

Kim: Hi, I'm Kim from Portland and I've had to leave my job to care for my elderly aunt who never married or had children 24/7. Unfortunately, I had to leave a full-time good-paying job with benefits, and now, I am going to be relying on whatever the state's caregiving rate is to take care of her. Of course, I have no health insurance now, but in the meantime, this is what I'm going to do. She's my aunt, I love her, and someone's going to have to take care of her. Unfortunately, she only has social security, so I'm taking on that burden.

Lori: Hi, this is Lori calling from Dallas. My mom supports my dad, and therefore, I support her in this season, and it's a very difficult season. There's just very few resources for caregivers. We live in Texas, which Medicaid, Medicare is the very bare minimum of resources and services that are available. My dad is bedridden, so that adds to the complications and he's obese. Whereas one person could come in and provide services, we need additional help. I wish that there was just more conversation about the burden caregiver space.

Becky: Hi, this is Becky I'm calling from Bellingham, Washington. I took care of my octogenarian parents until their death at 90 about a year apart. I am still wrapped by stress and trauma by the experience. It was easily the worst times of my life.

Melissa Harris-Perry: Now, we're going to hear from someone about their personal journey navigating the caregiving crisis during the pandemic. Lynn Hallarman is a former director of palliative care at Stony Brook University Hospital in New York, and a consultant to the National Center for Equitable Care for Elders based at Harvard University. Dr. Hallarman recently wrote about her 92-year-old mother's caregiving needs for the New York Times, and here's what she told me.

Dr. Lynn Hallarman: She was living in what I would call supported independence with a 24 hour home care home health aid professionals. She had what would be described as a moderate dementia which means that she had her problems with short-term memory. She had a little trouble with life's to-do list, so to speak. I was living about an hour and a half away from my mother's and working at Stony Brook as a palliative care doctor, and my sisters, two of them, one lives in New Hampshire and one lives in Massachusetts. Over the years, my mother had probably about six to eight years of a dementia diagnosis.

We had been slowly increasing the amount of help she needed, and that was usually in response to changes in her function. Meaning that for a long time, she was a very robust life-loving person. She didn't need too much help at first, but then over the years, that increased and she became more functionally dependent on her getting through her day to the point where around the time of the pandemic in March of 2020, she had 24-hour caregivers about five different people who were really ushering her through her day and to just keep her in as much quality as possible.

Melissa Harris-Perry: Once the pandemic hit, I assume it's not just one person who's there 24 hours a day with her, it's a team of individuals over the course of a day or a week. Was it possible to continue to have that care once COVID-19 and the restrictions associated with it emerged?

Dr. Lynn Hallarman: We were very, very worried. Under conditions, I'll say, relative stability over the years. My sister was really choreographing having many aides in the house. I was offering myself as the medical piece of my mother's care. Under those conditions of stability, we could deal with it, and we had wonderful caregivers that were with her for many years.

However, when COVID started to emerge in New York, which happened, it started in the city, and we saw it coming out like a wildfire really out on Long Island where we live, I was watching, I could see Stony Brook was starting to fill up with very sick patients. We realized that we needed to make some very quick decisions about my mother. That was partially because the wonderful aides that we had, they had their own lives, they had their own complications, they all commuted to take care of my mother, so we had to consider that.

The building that my mother lived in which she was renting in a condo, they had started to show signs of, I'll say, some panic actually around COVID and I was not really sure. I started to worry that I'd literally lose access to my mother, or they wouldn't let the caregivers in just out of the panic that was occurring at that time. What we ended up deciding to do was we said, "You know what? Let's get our mother closer to my sister in New Hampshire."

Very close either to live with her or to set up an apartment because we just thought we were watching it fall apart in New York. Just talking to my friends, we decided to make a move. In a very short time, I literally packed up her apartment. My sister found a place for her to stay, we found a home care agency that was willing to take my mother on. New Hampshire, they still didn't have numbers of cases of COVID.

My mother, we put her in the car along with, fortunately, one of her long-term aides was willing to come with us. I really don't know what we would have done if that hadn't been the case because she knew my mother, she knew how to care for my mother. I trusted her, my mother trusted her, so we all got in the car, and we sped away to New Hampshire, thinking that we were literally escaping a caregiving crisis.

Melissa Harris-Perry: There are two parts of the story I then want to build out a little bigger. One is, we heard a lot of media, and we had a lot of conversations and social media was full of and it was understood that the COVID-19 shutdown and maybe another one in pending created a childcare crisis. That is the tip of everyone's tongue.

You can't really talk about this past year and a half without talking about what it meant for schools to be closed and what it meant for adults, for the economy to have children not in school and not available, and not have childcare available as well, but did feel like eldercare, like the other part of caregiving was less talked about. We certainly talked about the effects on nursing homes, but I'm wondering why our care for our elderly parents is still so invisible.

Dr. Lynn Hallarman I would say invisible is a very good word for it. I would say it's basically invisible infrastructure. I had a very unusual experience as a physician early in my training as a palliative care doctor that made me understand the work maybe a little bit more than some doctors because I worked on an interdisciplinary hospice team. In that context, what that really means is that every day on this inpatient unit, we had the nurse, the social worker, the chaplain, myself, and the nursing assistant, another name for a direct care worker.

We all rounded, went room to room to see our patients. It's really where I learned what it meant to take care of someone, do the physical care, how difficult it was. You can get injured quite easily taking care of somebody. I learned about how to feed someone properly. I learned what it really meant to turn them over carefully to look at their backsides. A lot of things that you really don't get trained as a doctor.

When the pandemic came around, I understood the partnership that is necessary between unpaid caregivers and paid care that's necessary to take care of someone who's frail. I understood that part. In our case, we simply couldn't have done it without professional caregivers, and I'm forever grateful for that.

Melissa Harris-Perry: My older sister has been caring for her mother who is my godmother throughout the pandemic. She's now in hospice care and we're at the end. I was with her just two weeks ago and watching my sister first feed her mother, and then the big thing was lotion that day, making sure that she had enough lotion on her arms, then on her legs, and that they weren't dried.

I wonder about the disservice we do by not talking about how painful and beautiful and difficult and challenging. Also, as I watched my sister performing these acts, unpaid acts of love and care for her mother in these final weeks, it also just occurs to me we don't even have a good framework for the leave time that my sister needs for this.

She were pregnant and had a baby, we would understand she needed a certain number of weeks, but there isn't a social norm about the time that you need. Whenever I hear you talking about the time of these care teams, it feels almost like that time aspect, even more than any other aspect is what's critical.

Dr. Lynn Hallarman It's gratifying to be at the side of someone you love when they're going through something like that, but it's also incredibly strenuous. It's strenuous emotionally, physically. I would say probably one of the very hardest things I had to do as a palliative care doctor was to help families navigate through a system that really doesn't make it easy.

In my case, I was working with families who were literally in a caregiver crisis, meaning they had had maybe years because oftentimes, caregiving for someone with a chronic illness who is aging plays out over years, not just weeks, so the system doesn't really flex to that. I would have to sit with families and just go over what they had been doing, which was often ad hoc combinations of different family members helping.

They could pull that off in what I felt was really heroic levels for very long times, but then what would happen sometimes is someone would have an incident, for instance, breaking a hip, like in the case of my mother, she broke her hip, or when she slipped and fell off the toilet through no one's fault and broke her wrist. Things like that happen and patients will end up in the hospital. When it's all said and done, the amount of caregiving that they've been doing just doesn't work anymore.

Melissa Harris-Perry: It seems to me part of the story Americans like to tell about our health care system is that you go, you have treatment, you get better, and palliative care, that is not what's going to happen. There's no better. There is an end, but there is a thing that is a good death, and so I'm wondering if you could help us to understand that. What is a good death?

Dr. Lynn Hallarman I think I just go back to the story of my mother. When we brought her up to New Hampshire, we were staying in a hotel where my mother knew this hotel is where we stayed for Thanksgiving, me and my sister, and through no one's fault, because she was unstable, she actually wanted some chocolate ice cream, which was her favorite. She was reaching for that despite being told to wait, and she basically fell really just flat on her face.

She ended up breaking her nose, breaking a bone in her neck. When I found her, she was with the aide through no fault of her own. She was very unstable. She was whisked off to a local hospital. I thought, "This is everything I was trying to prevent for my mother when we talk about a good death." She was out of my control. She was in an ambulance. I was watching her disappear into an emergency room. I had to fight my way into the emergency room.

They didn't want to let me in. I was like, "Please, she has dementia, you're not going to get any information from her" We had this catastrophe that was playing out as COVID was starting to ramp up in New Hampshire. Everybody was scared, everything was closed. Through a miracle, we managed to get her out of the hospital and into an apartment that my sister had been frantically setting up. While this was all playing out, I was dealing with the hospital, she was dealing with the apartment.

What I had imagined a good death for my mother, it was definitely at home. We had had a long legacy in my own family of home deaths. My father died at home, my grandparents died at home, my great grandparents. In my family, lexicon, so to speak, a home death was the most important thing we were doing as a loving relative, but during COVID, we had her in an apartment. She had a hard collar around her neck for a broken neck basically. There were no masks. They had no PPE, nothing. My niece ended up sewing masks for the caregivers.

They were really on their own as well, so here we were, and here they were, and we just had to pull it together on our own. The agency, thinking about infection control, all the things that come up, they also had their own lives. When it comes to a good death for my mother, even though she was surviving this neck fracture that she had, I knew in my heart of hearts just because I was a palliative care doctor that it wouldn't take much to tip my mother into a depth scenario.

She was having trouble swallowing, she was having trouble eating. They couldn't get her up really from a chair. I actually had to go back to New York. I was there seven or eight weeks, I had to go back, so I wasn't there anymore. She was with the professional aid and a series from the agency. The night my mom died, it was the middle of the night. I got a phone call. I could hear what was going on on the other end.

It was the aide that knew her well that was really with her and my mother had been taken to the bathroom, she collapsed on the floor. The aide was with her on the floor, holding her hand and put a pillow under her head. We called 911 because she couldn't get her up off the floor and the paramedics were some of the nicest, kindest on the phone. I could hear them. They lifted my mother into bed. The caregiver that she knew forever was by her side, my sister was on her way, and my mother died. However hard that was for me not to be there, I knew because I had somebody that really knew what they were doing, who I had had a partnership with a number of years, a professional, and it's giving me incredible peace and comfort to know that. For our family, that's what happened during COVID, but I would say it was a so-called good death. I don't think that's been the case for everybody, however, during COVID.

I think that many people have had similar experiences to our family, but weren't able to get their loved one back home and found them disappearing into the system and not having access, which I think would be very difficult for them.

Melissa Harris-Perry: Dr. Lynn Hallarman is a consultant to the National Center for Equitable Care for Elders based at Harvard University. Dr. Hallarman, thank you for sharing your personal and your professional story with us.

Dr. Lynn Hallarman: It's been my pleasure. Thank you for having me on the show.

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Speaker: Hi, I'm calling from Madison. My grandmother needed to come live with us when I was in high school. My mom had been recently diagnosed with breast cancer, and she had to care for her mom, move her out of the house, close up the house, and my grandmother came to live with us. It was a very important time for us. We got to know her much better and she blossomed while she was with us. I don't know how my parents took care of all that while my mom was also dealing with a new diagnosis. They were so strong. I don't know how they did it.

Tom Shelley: My name is Tom Shelley calling from Shorewood, Minnesota regarding navigating caregiving of older people. My response was, yes, just for the last four weeks of my mom's life while she was in hospice for cancer. Main lesson learned was how important it is for a person in institutional care to have an outside advocate to look out for their interests.

Catherine: Hi, my name is Catherine. I'm calling from San Diego. It's a full-time job to do caregiving. Luckily, I was retired. It's not like children that grow up and need less, aging parents need more and more.

Linda Aldridge: Hi, this is Linda Aldridge. I am calling from Concord, California. When my parents were no longer capable of caring for themselves, they moved from Pennsylvania to California here where I live. I moved from a home I loved to a larger home where I and my partners could care for my parents. That was seven years ago. My mother has since died, my father is still with us, and looks like he will be for some time.

I am grateful to be able to care for him, but the long-term effect of living with a parent of having the daily friction on childhood wounds is hard and wearing in ways I did not imagine. I struggle with depression and despair. There are gains in this situation, but, oh, there are also so many losses.

Nancy: Hello, this is Nancy from Omaha. I was my family's dying process caretaker for a generation. My daughter has taken up that now. A family member died last month. She was in her 80s, got to die where she wanted to spend her last day, at the home of the grandson she'd raised and his family. Taken on [unintelligible 00:23:46] to the ocean and mountain she loved, and when she survived COVID, to a blues box to dance in her wheelchair. When she was done with life, she left us. Aside from missing her, I'm not sad about her passing.

I've been a support at the end of enough lives that I do not fear death. I fear for those dying alone, feeling forgotten, or held prisoner in bodies on machines not allowed to die because others can't bear to let them go. I watch her granddaughter giving support for her terminally ill grandfather, and I am ambivalent. It's such a hard pressure for both. I've tried to teach her to take care of herself, put on her own oxygen mask first, then continue doing what she can to assist others. Thank you for having me.

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