Rosalie Lorene Hagans Cary Jackson lived for 101 years.
For her last year and a half, until her death in November 2008, her primary caretaker was her granddaughter, Lorene Cary.
Cary, a writer, community activist and a senior lecturer in creative writing at Penn, wrote about that experience in her newest book, Ladysitting: My Year with Nana at the End of Her Century.
“Ladysitting” was the term the family used for taking care of Nana. When she would gripe ― “I know you have to get someone to babysit me” — they would respond, “no, she’s going to ladysit you.”
“Yes, it was babysitting,” Cary recalled. “But she was a lady. For us, it encapsulated the way to talk honestly among ourselves, with respect.”
Cary will be the keynote speaker Saturday, Nov. 14, for The Inquirer’s “Telling Your Health Story” two-day writing conference for health-care practitioners, patients, students, and caregivers. Because of COVID-19 restrictions, the event will be virtual. Tickets are available at Inquirer.com/TYHS.
Cary is especially well known to readers in Philadelphia. Her novel based on the true story of a formerly enslaved woman, The Price of a Child, was chosen as the first One Book, One Philadelphia selection in 2003. And her first play, My General Tubman, was produced earlier this year, pre-COVID-19, at the Arden Theatre, which has made it available for streaming at home.
For “Telling Your Health Story,” Cary will focus on Ladysitting, her loving yet unsentimental memoir about an extraordinary and even infuriating woman, and the impact she left. Cary spoke with us about family bonds, caregiving and “defense against despair.”
Tell us about Nana.
Nana came to Philadelphia from North Carolina with her father, mother, and four siblings. She was from a Brahmin Black family that had suffered the loss of possibility under Jim Crow. She then lost her mother, who died three weeks after having a baby. Her father then lost all his money in the Depression.
So she was a woman who had experienced a lot of loss early, and held on to what she could of her material life and her respectability. She was also a woman who, probably because of these things, had a very difficult time with intimacy. She had a failed marriage. She could be very cold. She could also be very indulgent.
She was trustee of a small parcel of apartments whose proceeds went to modest scholarships for Black students: generous to students, not tenants. Personally, she could be indulgent and graceful and eloquent, or cold and aloof.
I loved her. She loved us. She also had a fraught relationship with my dad, which I was very sorry for.
What were your biggest fears in deciding to care for her?
That I didn’t know what the hell I was doing. My aunt had been an invalid from the age of 32, and my maternal grandmother had taken care of her. My husband, Bob, and I had gone back to Iowa to care for my in-laws when each of them came to the end of their lives. But when you get into caretaking, you do not know what’s going to come next. We have some skills. We have some experience. But every caretaking experience is so, so different. You don’t know what will be required of you.
What actually turned out to be the most difficult part?
What keeps coming back to me is all the judgment calls. Constantly, constantly having to make judgment calls. And the anxiety of being overextended. I said to Nana, “I can take care of you, or I can take care of your stuff.”
She had a two-story house in New Jersey. I had a life, children, church. And then running over to New Jersey to maintain this house, which was a definite grandmother house. You had to go downstairs and fill the boiler with water.
And the business. I was full of shame about the way the sales went, and the people wrecked by the process.
What was the best part?
I’m not going to say anything joyful. The best was staying true to the commitment. There are so many times in daily life when you have a chance to go off the rails, together or not. I’m so glad that with her there, we were able to stay a family.
My sister had very young children and lived in Montclair, N.J. She wasn’t around the corner. But in a way, I felt closer to her through this. She did as much as you could possibly ask.
I also felt like it was a time for my dad and me to do the family work you do together. You do problem-solving in families. How do we live? How do we make enough? How do we help each other? Emotionally financially, socially, what do we need to do together? I feel like Nana’s care required we all work really hard on that.
That’s because my grandmother was not capable of intimacy. We had to figure out a way to learn and love together. I tucked her in one night with this little fleece thing that we called the Mommy Blanket. She was very thin at that point. I could feel her bones as I tucked. And she said to me, “I never had a mother to tuck me in.” Boom! Oh, right! That’s what was going on with you and dad. That’s why Nana’s understanding was that, at bottom, it’s every person for herself. It was hard for her to accept care without trying to pay for it, to escape obligation.
It was even harder for her to accept death. She was terrified. By 100, most people have already done a whole lot of figuring. But Nana was as shocked by mortality as a 38-year-old who has just received a cancer diagnosis.
That’s why I had to write about it. Because it wasn’t simple. I had stored up lots of lessons, but I hadn’t put it together into a full learning. And because I’m old enough now that I need to think about death.
With the pandemic causing so many deaths in nursing homes, people may be reluctant to go that route. What would you tell others considering being a full-time caretaker for an elderly relative?
First, I want to acknowledge all the people who are shoved into care without a choice. Many people just don’t have a plan B. Some, because they refuse to acknowledge that they need one. Nana planned to die like her father. Just go to bed one night and don’t get up the next morning. She had no plan B.
So many people don’t have money. They don’t have insurance. They don’t have whatever family relationships they need to be ready to talk about it. They have no plan B because their lives haven’t let them. Another reason I wrote the book is to be company for those people. But I cannot presume to give advice to folks in all the difficult circumstances.
Caring for someone has to do with finding things out, figuring things out. It has everything to do with who you are. Finding that out while you make mistakes and fall short. What is your capacity, socially, financially? And who is that person, and what is her or his capacity? Even their capacity to consider you and your family? Some people don’t. Some people never did.
Nana came to us on hospice. The doctors thought she had six months, tops. Nobody thought she was going to live for a year and a half. Or, as she did, to sit up in bed after about eight months and say, “Oh, honey, you’re taking such good care of me, I can’t die.”
Also, I would say that whatever your spiritual belief is, you need a practice of some sort, whether it’s religion, whether it’s mindfulness, whether it’s even some sort of sacred relationship time with someone you love. Something to lean on. What one has to get is some defense against despair as a caretaker. I feel so presumptuous saying that, because I have not been in the God-awful situations that some people are in day and day out and day and night. But that is what one needs: defense against despair.