Leaving a career, finding her heart
Photographed by Fran Collin
Broadcast journalist Mary Ellen Geist left her big-time reporting life and returned to her family home in Michigan to help her mother care for her father, who suffers from Alzheimer's.
"It was as though there were an arrow over my head, pointing at me," she says, recalling the "confluence of events" that led her to take this step. Her career, though going well, was no longer riveting. She felt her parents' lives were in a downward spiral, she missed her family and her father needed knee surgery. Maybe it was also a midlife crisis, she notes—certainly her friends were having them. "So," she said to herself, "if you're going to have one, why not help your parents during it?"
Three years later, we talk to Mary Ellen about her experience and her new book, Measure of the Heart: A Father's Alzheimer's, A Daughter's Return (Springboard Press, 2008).
Caring Today: What was it like returning to your childhood home after 20 years?
Mary Ellen Geist: I remember so well walking in the door and feeling, Oh, this is going to be so wonderful—then I had a moment of dread because I thought, How do I return to my family home, my tiny room I had as baby? I looked around my room, with all my stuffed animals, my little dollhouse. Where was I going to put my contemporary furniture, my latte machine? I just sort of ended up leaving my life in storage, except for my computer, a few pieces of clothing and some books. I sort of went back to the life I'd had as a child with my parents.
But then I found, after a few months, that I'd brought my passion for reporting to the situation. I kind of transferred that passion to this role I'd taken on—taking care of my parents. This is how the book happened—and it was, of course, a wonderful release.
I started keeping charts and schedules. I wrote down Dad's doctor appointments and what was going on with him physically and emotionally. I just dove in. I made some errors in the beginning. I'm an aggressive reporter. I don't give up on stories. Well, I wasn't going to give up on Mom and Dad. I was going to do everything I could to help them...and I think I pushed them a bit too much at first. Then I learned.
We actually had fun in the beginning and it was a wonderful feeling. Dad was lucid enough that we could talk about things. We traveled to see my sisters. We did lots of things my mom wouldn't have been able to do alone with my dad. I didn't know it would turn into three years.
CT: How was life over those next years?
MEG: At the beginning, there was the crisis of my dad going into the hospital for knee-replacement surgery, one of the reasons I came home when I did. So, for me, it was, OK, here's the project I can attack. I'll keep schedules, take him to the doctor. We'll go to rehab and the gym. We'll get his knees better. That kept me going. I was working with him and I could see his knees improving and the next thing you know, he was walking beautifully. So, of course, I felt I'd done this. Then, I asked, what's the next challenge? Well, there wasn't one. There was just helping my parents get through this phase of their lives.
CT: You seemed to find renewed respect for your mother—almost awe.
MEG: I continue to feel incredible awe for her. I'm loud, aggressive and talk about everything at the top of my lungs. She has this wonderful grace and a quiet way she deals with problems. That's a good—and bad—thing. As Dad declined, I think she really didn't want to tell us how difficult it had become. But she's very organized and resourceful. She handles so much and she even looks pretty doing it.
She's amazing. She'll be wrestling Dad into his tennis shoes. He keeps asking "Why?" at every turn. She simply says, "Because you need to put on your shoes." She doesn't get exasperated. Then they emerge from the bedroom. He's looking wonderful, and she's coifed perfectly. After I'm with Dad for two hours, my hair is sticking straight up and I haven't even changed from my pajamas into my jeans yet.
CT: Talk about music in your family's life. You're all musical.
MEG: We are. We burst into song at any moment. This was a bit distressing when we were younger. We'd be driving somewhere and suddenly start singing—friends found this very strange. But I realize now, this is a wonderful base for this phase of my family's life because this is the way we communicate with my father. It's been a way, over the years, that we've gotten along and worked out our problems. We gather around the piano and it's: "You're flat." "No, I'm not." "You're taking the tempo too fast."
And music was important for my father when we were growing up. This is the way he expressed himself; he could be emotional through his music. As a young boy he sang with church groups and made recordings and I think his identity was very tied to his role as a singer. When we sang together as a family, he was so proud. So, when I came home to take care of my father, since the words were all falling away, the way I talked with him was to sing with him. And it still is.
CT: How did you get to meet famed neurologist Dr. Oliver Sacks, author of the new book Musicophilia, among others?
MEG: In my book proposal I said, "I will be talking with Dr. Oliver Sacks." About three months into writing the book, I emailed him and told him about my father's proclivity for music, how amazing it was, after having Alzheimer's for over a decade, that he could still remember the words to pretty much every song. Dr. Sacks emailed back-he could come to Michigan or we could meet in New York. Well, it happened that we were going to New York the next weekend to celebrate my mother's birthday with her brother.
When Dad walked into Dr. Sacks' office, they connected immediately. It was wonderful to watch. We sang in his office—and Dr. Sacks ended up writing about my father in his book. And we left a Grunyon CD behind Dr. Sacks often plays "Shooby Doin'" , a song that contains my father's solo, during radio interviews. (Editor's Note: The Grunyons is a 12-man singing group my father has sung with for decades. Until very recently, they included him in their performances.)
CT: How do your two sisters fit into this?
MEG: They have been so amazing and supportive and have been there as much as they can. They have families and jobs, and I know it's been strange that this middle child just sort of parachuted into my parent's lives and took over—but they're nothing but grateful.
Before I came home, we discussed this at length. My sisters wanted to make sure that I would not be giving up my place in the world as a journalist. They were worried that I've lived in cities and was coming back to live in the middle of the woods.
It's hard to describe, but I've talked with lots of daughters-and sons-who felt that they are the ones who had been called home to do this thing but couldn't describe exactly why. But a lot of them were in circumstances like mine—didn't have kids, or they were going through a job change or the way they felt about their jobs so that they could come home to help.
CT: What's the best thing you did for your dad?
MEG: I think I now realize how Alzheimer's affects a person—that feeling of being so lost and alone. I was another person to attach to besides my mother, which meant that it wasn't just the two of them alone in the house. There was this third person. I brought my usual chaos: Let's do this. Let's go to that.
Also, my father would wake up sometimes in the morning and ask, "Is our daughter here?" I think he felt a return to a comfort zone, a time in his life when his whole family was there. He attached to me—and I attached to him and Mom. I think this was really good. But, by year three, it was exhausting. There came a time when you say, There is too much attachment.
CT: And the best thing you did for your mom?
MEG: I think it was her having another person there. The two of us could sit on the couch and share our feelings. "It hurt my feelings when he didn't remember which daughter I am" or "He didn't remember our wedding day." So many caregivers are facing this alone. I was a sounding board. Often Dad would go to bed about nine and Mom and I would stay up and just talk and be with each other. That, and the help with the daily tasks of simply cleaning and cooking that are so overwhelming when you're also taking care of a person with Alzheimer's.
CT: And the best thing you did for yourself?
MEG: For three years, I really feel I made a difference. I think people look at people like me and say, "She'll never marry again" or "She's aggressive" or "She's just a career gal." I've left people sitting at dinner to cover a fire. Once I had friends coming to town and I ended up in London covering Princess Diana's death. My job was all that mattered.
Many people can balance everything but I think, for me, it's been wonderful to find out that I can have these skills of the heart after being a career woman for 20 years. It's helped me in my relationships with people. I learned I could cook a pot roast. I learned about cleaning products. I developed domestic skills I didn't know I had. Most of all, I think it has expanded my heart...I really do.
CT: What has happened since you finished your book?
MEG: Sometimes I feel like a failure because Dad's in a nursing home now. Maybe it's good for people to know that I did this thing for three years and that it really made a difference but that you also get to a point when you know you can't do it anymore. I had to listen to my needs and my mother had to listen to hers and think what was going to happen next in our lives.
Probably, none of this would have happened if my father weren't so wonderful. He's an optimist, and 13 years into this he says he loves us all the time. Unlike those with Alzheimer's who become hostile and difficult, he says thank you, and pulls the chair out for my mother when we go out to eat-even though he might not know which utensil to use.
What's made it so awful is that he doesn't remember anything anymore and can't do much of anything for himself. It was exhausting, even with two of us as a team, taking care of my father. So, in January, we finally made the very difficult decision to place my father in a nursing home. I feel guilty and am having trouble with it. But I'm hoping my mother will have another chapter in her life, and I know I have to get on with my life. Yet, it's so strange to have developed this attachment and now we've handed him off to strangers.
CT: But you still see him.
MEG: I do. I'm not sure what's going to happen next. If I were to continue to write, this would be called: "Letting go of my father." But he's still here—and that's what's so awful about Alzheimer's. Now, each time I go to see him, he doesn't realize I've been gone and that often hurts. Sometimes my mother and I see him together, other times separately. The last time they brought him down to the lobby to meet us, he looked at my mother and then at me, put his arms around us and said, "Ooooh, it's back to us." And that made me sad, because I still want to be "back to us."
Also, when my father said that, I missed who I was when I took care of him full-time. I missed being a caregiver. I feel like I was a better person then, and that the three of us were better people in every way. That's one of the reasons why it's so hard to let go.