Talking With Mary Ellen Geist: Don't Stop the Music

The author of "Measure of the Heart" reflects on caregiving for her father as his Alzheimer's advances, and on staying connected with him through music.

By , Caring.com features editor
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Three Christmases ago, Woody Geist was more than a decade into Alzheimer's and could no longer remember the names of his three daughters, much less those of his fellow Grunyons, an a cappella group he'd sung with for 30 years. But on a December evening, he mounted the stage with the Grunyons to open for the Radio City Music Hall Rockettes' annual Christmas Show at the Fox Theatre in downtown Detroit.

After a lead-up to the performance that was nerve-racking for his caregivers -- wife Rosemary and daughter Mary Ellen Geist -- which included losing him momentarily, Woody Geist performed flawlessly before hundreds of people.

"There was Dad, looking the way he always did when he sang with his group: confident, smiling," recalls Mary Ellen Geist in her caregiving memoir Measure of the Heart: A Father's Alzheimer's, A Daughter's Return.

As audience members who knew nothing of his condition congratulated Woody Geist on his performance, he asked, "What did I do?" He may not have remembered a moment onstage, his daughter writes, "but I am quite sure, from the look on his face, that he knew something wonderful had happened."

Though by profession Woody Geist was a CEO of an industrial distribution company, he always loved music. (In college, he was voted "Swoon Boy" by coeds who thought he danced and sang like Frank Sinatra.) Now, as Alzheimer's has stolen much of the rest of his life, his avocation has become his support.

He whistles from the time he wakes up until he goes to bed, and sometimes during his sleep. His daughter wakes him up with one of his favorite Sinatra songs, "In the Wee Small Hours of the Morning." Describing him in Musicophilia: Tales of Music and the Brain, Oliver Sacks wrote that music has the power to "give him back himself" -- erasing the moments when his is painfully aware of how the disease has ravaged him.

In a family that routinely sings in three-part harmony, Mary Ellen Geist has found music as essential to her caregiving as it is to her 81-year-old father. As the "old Woody" has receded from her view, music has become one of her last connections to him. She's found truth in what music therapist Concetta Tomaino told her: With music, "the person is never gone."

Measure of the Heart illuminates the backbreaking physical and anguishing emotional demands of caregiving as well as the hard-won gifts that can make it so rewarding. But the book ends in limbo, with mother and daughter contemplating when Woody Geist will need residential care and when they -- particularly Mary Ellen -- will need to move on with their lives.

When Mary Ellen Geist spoke with Caring.com, the first thing I asked her was what had happened since she finished writing her book.

Your father's worsening condition and the strains of caregiving -- especially on your mother, Rosemary, who has cared for him for 14 years -- seemed to be signaling that it might be time to consider assisted living for him. What did you decide to do?

In January, my mother and I felt exhausted and at risk -- not just physically and emotionally but, for me, at risk for not getting on with my life. We all know adult children who came home for a short time and are still living in the basement of their parents' house. And that's OK if it's a decision you make, but I wanted to make sure it would be a decision that I made and that didn't just happen to me. And I do worry about my life skills and when will I get back to work.

My two sisters and I got together for a family conference. We agreed that although my coming home had probably extended our father's and mother's lives, we can't save my father from Alzheimer's. But we could save my mother, and she could have another chapter in her life.

So we put him in an institution in January, and it was the most horrible experience of my life. To me, it was worse than someone dying. I know that's severe, but I really believe that.

I had formed a bond with him and the way that we lived together. It was as if we were this trio. My mother and I had formed this caregiving team and surrounded him with love and music, and then we just dropped him off. We dumped him.

How did he do there?

The first and second day seemed fine. My mother and I actually slept for an entire day. We were exhausted from the entire experience, and probably from the last three-and-a-half years of our lives. When we came back, he was sitting in a corner alone, totally ostracized. No one was talking with him and no one would sit with him at dinner.

As I write in the book, he created a soundtrack for his life and whistled all day. And that's why people wouldn't let him sit down with them. One man shouted, "If he sits down with me, I'll stuff a rag in his mouth." Once when I was there, these women were gathered around him telling him to stop whistling -- I really thought they were going to attack him. And the more nervous he gets, the more he whistles. The funny part is, it was actually setting off their hearing aids!

The people in the nursing home said he could no longer be in assisted living. He'd have to move up to the Alzheimer's unit, where many people are near comatose. But he was physically fine.

My mother and I went on a vacation to Florida for a couple of weeks and I called him the day before Father's Day. When I couldn't be with him, I'd call him every day and we'd harmonize on the phone, but this time he wouldn't sing with me. I knew something was very wrong.

I said, "Dad, how are you?"

He said, "I'm dead."

I said, "I'm coming to see you tomorrow, on Father's Day," and he said, "Well, don't bother because I'll be dead."

I got on the phone with the people who ran the place and they said, "He's been saying he's dead for two weeks." And I said, "Didn't you think perhaps you should inform me of this?" Because to me the emotional state is as important as the physical state.

So my older sister went and got him, basically kidnapped him, and took him up north.

So now he's back home?

Yes. He's gained back weight, took my mother ballroom dancing, and played tennis two days after being home. He remembered my name the other day. I'm so glad my sister got him. It's been a gift.

Your father is actually doing better than before he went into a residential facility?

I hate to be so negative because some people have wonderful experiences with nursing homes, but, yes, he's better. I have no idea why.

You know what's interesting? We missed him too. And I think he feels how much we love him. I think he missed us, even though he can't remember.

I almost feel that my father has become telepathic -- you see that with people who have Alzheimer's. He says very lucid, articulate things. Right after he came home, I was trying to get him out the door to the doctor, but he doesn't like to leave the music. So I put on his favorite Frank Sinatra in my Jeep and he followed the music to it, like in The Pied Piper. He opened the door and looked at me and said, "Thank you for keeping me alive."

I can't believe the things he says. It makes you realize that you've made a difference.

It's remarkable how you've used music to stay connected to your father.

That's why I can't give up on my father. I visit institutions and see people sitting next to one another and not even talking, or just watching television, but there's always a way you can communicate. There's always something inside.

John Zeisel, of Hearthstone Alzheimer Care, whom I interviewed for my book, believes this too -- that there's a whole other person who emerges and a whole other Alzheimer's chapter in that person's life, and that you don't just extend that person's physical life -- you find that new person. I know that I have a relationship with my father that's about music and these loving, wonderful things he says, and the way I get into the person that's inside, that's there now. And bits of that person are my father the way he used to be.

When he was unable to sing, I let go more. I thought he was dying. Now he's back, but I feel that when he stops singing and remembering songs, that will be my time to grieve even if he's still with us physically.

Do you know how many single women move back into their parents' homes to care for them?

No. I think a lot of them don't want to admit it! There's a shame involved, and that's one thing I wanted to address in the book. The stereotype was the spinster -- the daughter who was lost and couldn't find a husband and didn't really have a great job, so she's the one who should go home and take care of the parents. What I'm finding more and more are daughters who had great careers and were happy and successful in their lives -- but chose this. That's how we're redefining the role of caregiver.

You started a long-distance relationship while caregiving. Was it hard to keep it going?

It went on for a while, but it didn't work out so well. Then I had a relationship with a man in northern Michigan, but it's difficult to carry on a relationship when you're trying to take care of your father and write a book.

I get more and more e-mails on my website from women who say they came home to take care of their mother or their mother moved in with them, and now their husband is moving out. I really think that being a caregiver is a courageous, good thing, but I'm not recommending that all adult daughters move home to take care of their parents. In my case, I chose this. I'm not going to have any resentments. But if it means sacrificing too much of your life or your primary relationship with a spouse or lover, I'm not sure you should have to give up that much.

We're going to have to make a big decision soon, and he probably will have to go to another institution. It's very tough for my mother now. She feels trapped. She feels that she can't go to dinner or a movie -- you get in this funk where you can't move, you're paralyzed, and I'm watching my mom do that again. So I have to keep an eye on her and an eye on me, but we can't afford to have someone in 24/7 or move him into the home that we liked. It would bleed all my parents' resources. So it's a dilemma.

Why were you the daughter who returned home?

I often think, in retrospect, that maybe there were things I had to work out with my parents. I can't say why -- my parents have been nothing but supportive and great to me. But I did flee. There's always one kid in the family -- "that crazy kid" who takes off to the East Coast or the West Coast. I just got in my car one day and drove to LA. I was always the wild child, an adventurer. I wanted to go. And almost as strongly, this time, I wanted to come home. It's as if I used up all that wanderlust.

What do you wish you had known about caregiving?

I had a Pollyanna-type view of what it would be like. I thought we'd sing together, I'd cook with Mom, we'd go through the family photos, I'd clean up everything in the house and help them organize their lives and change their lives for the better. I wish I'd known how exhausting it would be. But would that have changed anything? I think I still would have come home, but I would have braced myself a little more for how difficult it was going to be.

If I was talking to someone who was going to do what I did, I'd say, "You need to keep your other friends and get out." My phone bills are crazy. I talk to my friends all the time, and I need them.

And I think I should've kept other things going. I wish I'd developed some social thing that I had to do, say, between 3:00 and 4:00 every day. This is what spouses do wrong too. My mom should have said, "Mary Ellen, now that you're home, I have to go see women friends or go to this book club for an hour every day." You've got to take care of yourself.

Was writing a kind of therapy?

At 2:57 in the morning, I'd wake up and I'd go downstairs to write. I had to. It's funny because that's when I used to get up and write for KGO radio. But this time I wrote my own story. From three to six I'd write, and then I'd go back to sleep.

I feel like my father reached through his Alzheimer's and gave me the gift of this book. The advance helped me stay home for two years to take care of him.

What did you get out of caregiving that you didn't expect?

I really had started not liking the person I was becoming. I was already kind of bitchy as a reporter, but as an anchor you get even bitchier because you're alone with a microphone and if something crumbles, you have to keep talking. I watched the people around me who were high on the ladder and I didn't really like how they treated people.

Caregiving has expanded my heart in a whole new way. I have this patience I didn't know I had. And this sense of giving over -- and giving up the petty, stupid things that you thought were so important in your life -- to help somebody in need feels really good. I know that sounds dorky, but I really learned so much about myself. I found that I am kind after all and that, ultimately, I would choose kindness over success, and I'm very glad to find that out. Because maybe my job and my identity as an anchor and a reporter wasn't all that after all.

People used to call me "Danger Girl" because I lived on breaking news. I didn't need anyone, and I wasn't a nurturer. If I had a plant, it would have died because I wouldn't have watered it. Now I've changed the markers by which I lead my life. I found this quote recently from Mother Teresa: "If we have no peace, it's because we've forgotten we belong to one another." I think that coming home was a way of saying I belong to my parents and they belong to me.

Ideally, you say that every person with Alzheimer's who lives at home should have two caregivers.

With two people, you can take care of each other. When Dad would go to sleep at night, Mom and I would talk to each other. She has COPD [chronic obstructive pulmonary disease] and if she gets sick, it could turn to pneumonia. One time she was coughing and sick, and if I hadn't been there, I really don't know if she would have gone to the doctor. You need to have another person who's looking out for you. Two people can take care of each other as well as the person who has Alzheimer's.

You also believe that part of the reason Alzheimer's caregivers get so exhausted is from trying to keep up the pretense that things are still normal.

I think that's what made my mother so tired. We continued to go out to dinner with my father, but she wanted him to look perfect, so it would take an hour and a half to get him ready. Well, he could just throw on a sweatshirt. But she wouldn't capitulate to that. She wanted her Woody to look really good and wear suits, and it was exhausting. She was trying so hard to keep him in the world. But now she's not doing that as much.

She also imagined all these things he needed and wanted: "He says he doesn't like his clothes this way" or "He likes his shoes a certain way." But he doesn't care. It's just how she kept him in her mind the way he was before.

Do you think many family members are too embarrassed to take people with Alzheimer's out in public?

Yes. In restaurants, Woody shakes hands and introduces himself to the waiters and waitresses over and over. There are times they really don't like it. And he will whistle or burst into song in a quiet restaurant and it's really embarrassing. That's why elderly people are axed from the world when they get like this.

But we're a weird family. We decided to take him out and expose the world to him. I see the waiters and waitresses when they see us coming, and I know they're probably saying, "Oh, it's Woody. He's going to introduce himself to me a lot and he'll probably spill stuff down the front of himself." But it's so worthwhile for the person to have some semblance of the way their lives used to be, because the social cues often come back, just like the music comes back.

Realistically, do you think that if more people took out loved ones with Alzheimer's, society would become more accepting of them?

I do, and I think they should. One of the reasons my family was not prepared for this, and why a lot of people don't know what to do, is that elderly are not incorporated into our lives enough. Instead, they become isolated and shut away.

When I did an interview with Wisconsin Public Radio, I said, "I bet on every block around here, there's an elderly person who is alone in an apartment, who doesn't go out and no one comes to visit them." This woman called in and said she's 86 years old and no one had come to visit her in a year. She said, "I just found out I need to have a heart surgery that's going to cost a lot of money, and I don't think it's going to be worth it for me to have it."

I felt so awful and I thought, what if we even just called people on the phone? If you stop in for 15 minutes a week at the home of that elderly person you see in the window all the time, you would make such a difference in that person's life. But I think we don't want to touch it, see it, or be around it because we fear our own mortality and aging. It's not just about children being responsible for their parents. It's about society being responsible for its elderly.