Mary Ellen Geist, author of "Measure of the Heart: A Father's Alzheimer's, A Daughter's Return" described herself as a "typical career woman." She "lived and breathed" journalism, but after returning to her childhood home in Michigan to help her mother care for her father, she saw a total transformation of her life to one that was defined by love. To help her father, she and her mother would start their day playing his favorite Frank Sinatra song "Wee Small Hours of the Morning." She would take her father on long car rides, where they listened to his favorite music and she would tell him the story of his life. They gave him chores, such as getting the newspaper each morning, and vacuuming, so he would continue to feel needed. The experience, "expanded my heart and enriched my life in so many ways. I discovered I had something many of my friends and co-workers might find surprising: I have patience, after all! Most of all, I discovered that one’s life is not ultimately measured by one’s advancement in the workplace." In this interview, she shares tips on the special challenges of feeding those with Alzheimer's and she offers tips on coping with hospital stays, and designing a daily routine that continues communication and interaction despite the disease.
Commitment: Why did you abandon a very successful career in broadcasting to return home to care for your father?
Mary Ellen Geist: As I entered my late forties, I saw that my parent’s lives were in decline due to my father’s Alzheimer’s and I thought: “Why not?” I had won awards and covered big stories and traveled all over the world in my twenty-year career as a journalist. Some of my friends were going through major life changes as well, and deciding to work overseas, joining the Peace Corps or helping with various charities. I realized that I might be able to do more good helping my parents than I could by doing my job.
Commitment: How did you adjust to being back home with your parents after years of living on your own?
Mary Ellen: At first, it was a joyful homecoming. I threw myself into my new role as caregiver and helpmate for my mother. I wanted to take the load off my mother, and it was a pleasure giving comfort to my father and helping out with daily and domestic chores – something I’d had no time to do for two decades. I enjoyed going through old photographs and mementos and getting reacquainted with my family and our history. It was a little weird to be sleeping in the same bedroom in the 1860’s farmhouse in the country where I had lived as a child, especially after living alone in apartments in New York, San Francisco and L.A.!
When I came home, I suppose I had this misconception that I’d come to the rescue. I thought I was going to “fix” everything that had gone wrong in my parent’s lives, including my father. It turns out what works for an aggressive reporter just doesn’t cut it in the world of caregiving. I know I helped. But I had to live my life in a completely new way – and at a very different speed! – and measure success in an entirely different way, too.
I changed my approach. I also achieved a new kind of patience. Almost everything in my life changed. And I came to the realization that I couldn’t “fix” my father’s disease. I could only help a little bit along the way.
Commitment: What advice do you have for other children of Alzheimer's patients who make the choice to return home to help care for a parent?
Mary Ellen: I think it’s important to feel that you are doing this because you CHOOSE to do it. If possible, do as much research as you can about the disease before you “take the leap”. Have not only an entrance strategy, but an exit strategy (something I neglected to formulate before I came home.)
Know that you are emotionally very strong – as well as physically strong -and that you can handle the daily sorrow and joy you will experience living with someone with Alzheimer’s.
I think, in some ways, it was easier for me to take care of my father than it was for my mother, because I hadn’t been with him every day the way my mother had. I accepted where he was in the trajectory of his disease; I saw him as a father who had diminished capacity due to a degenerative disease, not as a loved one I had lost as a partner.
I think it is difficult for many of us to understand the “in-your-face” grief spouses withstand on a daily basis when they are caring for someone with Alzheimer’s. It was easy for me to pick up a child’s puzzle and say “Dad, let’s play this game together!” But that is NOT something a husband or wife wants to do with a mate because it is a glaring example of how much the person they love has lost.
Unfortunately, due to the recent state of the economy, I know that many people are not able to choose to become a caregiver the way I was able to. But in the event you CAN choose, I would also advise this: that if possible, when you do something like this, you have already lived many of your dreams the way I did. And hopefully, you’ve saved more money than I did!!
Commitment: You wrote, "we are coming home to learn how to measure our lives by new standards that we've never explored before, to measure our lives in a different way. Instead of defining ourselves by our careers, we're defining ourselves by the amount of love our hearts can hold." How did returning home to care for your father transform you?
Mary Ellen: I had been a typical career woman. I lived and breathed my life as a journalist to the detriment of almost everything – and everyone - else. When I came home, it was a total transformation to a life that was defined by love, emotion, family and relationship. Talk about a major life change! And yet I honestly feel it expanded my heart and enriched my life in so many ways. I discovered I had something many of my friends and co-workers might find surprising: I have patience, after all! Most of all, I discovered that one’s life is not ultimately measured by one’s advancement in the workplace.
Life seems richer, bigger, better these days; it has more depth.
Commitment: What was the hardest part of watching your father's memory disappear?
Mary Ellen: I know this is strange, but it’s almost as if the loss of his memory was not as heartbreaking as his own awareness of his loss of his memory. To this day – almost sixteen years from the day of his diagnosis – he is aware he is not the man he was. He apologizes, saying the words “I’m sorry” to us repeatedly. I wish he didn’t know what he does not know. Just today (November 23, 2009) when I was with him, he said “Isn’t it awful? We’ve got to do something. I’m dead.” I think what he’s saying is that his mind is dead. He says the words “I’m dead” over and over again. I believe he knows his brain has atrophied. This is such a tragic disease.
Commitment: What is the hardest part of caring for a relative with Alzheimer's? Tell us about the moments in daily life that can be so difficult, that those who are not caring for Alzheimer's patients cannot even imagine.
Mary Ellen: I know that many people might say it’s the physical parts that are the most difficult: trying to get someone in the shower who has become afraid of water, trying to get someone to eat who no longer recognizes food or utensils, trying to get someone dressed who can’t even recognize what a shoe is. But for me, the hardest parts are realizing that the person you know and love doesn’t remember his life, or your relationship to him.
When I first came home, I remember one day when I was driving in the car and we were listening to my father’s favorite CD, Frank Sinatra’s “Wee Small hours of the Morning”. We were having a lovely afternoon and I remember I was feeling so happy to be with him to comfort him. He turned to me slowly as we drove and said, “Are you the youngest one?” I cannot explain the pain I felt the first time this happened. I said, “No, Dad, I’m your middle daughter”. After the lump in my throat dissolved, I decided to take this opportunity to tell him the story of my life, and then I told him the story of HIS life. He loved hearing it all. That’s what I do now when he makes a statement like this. Ultimately, this heartbreaking moment led to a revelation, a way to communicate with my father in a new way.
I often see people watching T.V. with their loved ones, or just sitting next to them, apparently with nothing to say. To engage a person with Alzheimer’s and to tell them stories of your life or their life, to look through a photo album of their lives while describing it to them, to play their favorite music, and to sing with them, are lovely ways to “connect”. I believe there are ways to communicate and connect until the very end of this disease.
Commitmenet: Can you share with us a little about how your father was diagnosed, and how the disease progressed. In the beginning, what began to change for your father?
Mary Ellen: My mother says at first, he started to forget people’s names. She chalked it up to simply getting older. Then he started forgetting entire evenings. She and my father were becoming frightened. But she says they didn’t take action until he started getting lost driving home. It was actually my father who insisted that he go to a memory care specialist. When the diagnosis came in, he wrote letters to all of us, his three daughters. He expressed his sadness and fears, but he said he was most worried about what was in store for my mother, and he asked us to take care of her. This is so typical of my father. He was always so considerate of others.
After the diagnosis, he started taking Aracept right away. He took Reminyl and Namenda as soon as those drugs were available. His doctor, Stephen Aronson, was very progressive and continues to prescribe a “cocktail” of drugs (including Marinol, a derivative of marijuana) to make my father as happy and comfortable as possible. The fact that he is still walking around, able to speak – and to sing! – and is relatively healthy after having the disease for almost 16 years – is a testament to early diagnosis. I can’t emphasize enough how important early diagnosis and treatment are.
Commitment: What are some ways families can make life easier on the Alzheimer's patient when it comes to eating, food preparation and daily routines?
Mary Ellen: Make it simple. I have no idea why it is important to us to have the people we love who have Alzheimer’s eat the way we eat. What’s the point? Why do we need them to eat the food we eat, use the utensils we use? Can you imagine being upset with an infant because all he/she can eat is baby food? FINGER FOOD is one of the answers. Don’t expect your loved one with Alzheimer’s to be able to use utensils. Carrots. Broccoli. French fries. Chicken nuggets. Hot dogs. Sausages. Anything that can be eaten with your fingers - no messy sauces. The fewer choices a person with Alzheimer’s has to make while having a meal, the better the dining experience will go.
Commitment: Can you share with us some of the wonderful routines you and your mother kept going that helped your father feel needed and a part of the family?
Mary Ellen: We often began the morning with Frank Sinatra’s “Wee Small hours of the Morning”. Familiar music is a wonderful way to start the day. We sang together often which always made him feel comfortable and even useful. We wanted to continue making him feel needed. Getting the newspaper the way he used to do every morning, even though my mother had to direct him to the mailbox and help him put on his coat was a worthwhile venture as well. We tried to include him in the cooking process whenever possible. We would both often say “ Dad I need your help with this” even if it wasn’t exactly his area of expertise.
He took a liking to vacuuming and did it really well, so we’d often had him vacuum, even if the floors didn’t need it. I’m convinced this helped his self-esteem and sense of pride. My mother was committed to involving him in as many things as possible and making him feel needed. We took him to concerts and out to dinner until recently. I am convinced this helped to “keep him in the world” for a much longer period than most people who have had Alzheimer’s this long might have.
Commitment: Can you share your recipe for "Alzheimer's Chicken", and share with our readers the meaning behind this beautifully written section of the book.
Mary Ellen: The recipe I put in the book – though I must say it’s delicious! – is more about keeping someone with Alzheimer’s included and involved in your life than it is about the chicken! But here’s the recipe:
Whole chicken, about 4 pounds
1 green apple, washed and cored
3 stalks of celery, rinsed
1 yellow or white onion, skin removed
several sprigs of fresh rosemary, sage, and thyme, rinsed
½ cup red wine
3 tablespoons olive oil
Preheat oven to 350 degrees. Rinse the chicken, removing and discarding the giblets from the cavity. Place the green apple, celery, onion and herbs on a large chopping board. Hand a not-so-sharp knife to the Alzheimer’s patient, depending of course on how far the disease has progressed. It may not be wise to do this for Alzheimer’s patients who’ve been living with the disease for more than ten years, but my father can still safely use a knife if I stand next to him and make sure he isn’t holding it upside down.
Let your loved one chop up the fruit, vegetables, and herbs however the hell he or she wants to, without hovering and explaining how to do it! Don’t say, “No! Do it like this!” Remember, it doesn’t matter what the chunks look like or how big or small they are. The process can be liberating not only for your loved one but for you.
Open up the cavity of the chicken and have your loved one help you stuff the bird with a big wooden spoon. Put the chicken in a 9 x 13 inch baking dish or pan. Pour the red wine, olive oil, and a little water over the stuffed chicken. Cook it in the oven at 350 degrees for at least two hours, until the temperature of the thigh reaches 180 degrees. Have your loved one help you baste the bird often. Let it sit a bit after you’ve taken it out of the oven; then slice and serve.
The aroma of the chicken will fill the house, and it will remind you that a person living with Alzheimer’s can, in some way, still be part of making dinner when you have the time. Sing together while you’re basting, if it’s possible.
I think this is just one example of the way my family decided to keep my father in this world, with music, with cooking, with physical activities, with restaurants and concerts - anything to make him feel better and part of our lives, until he – and we – couldn’t do it any longer. When you serve it, make sure thank your loved on for helping you make the dinner.
Commitment: Despite Alzheimer's, what are some of the qualities, memories and feelings it seemed your father was able to hold on to?
Mary Ellen: He still knows all of his family, which is a blessing. Most of the memories of his life are gone. But lately, he seems to be returning to his time as President of E and E Engineering and wants to talk about business. The words “assembly line” and terms that had to do with his work have entered his vocabulary recently. Sometimes, there are unexpected lucid moments, often ones that are brought on by music.
He remembers things like the Lord’s Prayer. He can still count. I try to do these exercises whenever I’m with him. I am convinced remembering these things give him a sense of pride.
But the most important thing for him is music. It’s how we communicate. He sometimes still sings softly to himself. When we play CD’s of his favorite songs, or sing songs with him, it’s as if he comes alive. My mother, my two sisters and me, the sons-in-law, the grandchildren and music : they are all intertwined and they comfort him.
Last night, when I walked in to the assisted living facility where he now lives, we started singing, and then he said “ I love you. You’re wonderful”. His positive approach to life stays with him. So much is gone. But music and love remain.
Commitment: Throughout your book, you wrote about the importance of singing and music in your father's life. How was he able to hold on to the ability to sing and know the words to the songs, despite Alzheimer's?
Mary Ellen: I know this seems ridiculous, but I can’t answer that. Neither can most doctors, scientists and researchers I’ve talked with and interviewed. My father sang from the time he was a little boy and I feel his identify is inextricably tied to singing. He was very close with the group of men he sang with for forty years in an acapella group called “The Grunyons” (you can view my father’s last public performance with the Grunyons in the HBO Series called “The Alzheimer’s Project” executive produced by Maria Shriver which won two Emmy awards. His segment of the documentary is called “The Memory Loss Tapes.”)
I’m convinced that the relationships he had with the twelve men in his singing group and the joy he felt performing with them and with his family imbedded the music in his brain in a special way because there was so much love around him when the music was being sung.
Commitment: How can music be used to help Alzheimer's patients retain a part of themselves, when everything else is slipping away?
Mary Ellen: I am convinced music is a tool, a way to communicate, a way to open a door into the brain of people with Alzheimer’s that we have only begun to investigate. You can use music to improve the mood of a person living with Alzheimer’s. You can use music to help someone who seems to be catatonic start to speak again. You can use music to comfort someone with Alzheimer’s.
Music also helps with many daily tasks. I have seen loved ones communicate with people living with Alzheimer’s by using music to engage them. I have watched music help connect someone with happiness. If you can combine music and some sort of physical skill (like dancing) it’s even better!
Commitment: Your mother is quite a heroine throughout this book (as well as yourself) for her hard work on behalf of your father. How did your mother cope so successfully with caring for a husband with Alzheimer's?
Mary Ellen: I’m going to have my mother, Rosemary, answer this:
“As Mary Ellen has mentioned in her book, denial is the normal reaction until the official diagnosis is made. One has been denying the symptoms even when they are obvious, often for a long time, as in my case. Then a time came for me of a kind of terror at the realization that, yes, It is real. it is happening to me. It’s all I could think about. That is the time when action must be taken – this is the time when one must seek the best medical care from neurologists, gerontologists, and psychiatrists. CAT scans, MRI’s , endless word tests etc. will be ordered. Get every “rule out” test your doctor wants in order to eliminate other causes. Then you know you’re REALLY in trouble! And though you’re frightened, it’s time to be active and doing, and this helps .
Drug regimens will be offered at this point and they are also useful. Clinical trials come along and are worth trying. I think Woody has survived for 15 years partly because of these drugs. It is like the stages of grief - and it is grief –denial, anger and acceptance.
Woody and I have loved each other a long time - 61 years! - It is important to keep this in the forefront and reflect it in all you do, as he would for me. Keep all expressions of love going –touches, hugs and kisses, and holding hands. Music of our early years together is very helpful and often brings a smile. In Woody’s case, music was the theme of his life, and he can often sing words, music and parts to familiar songs although he can’t remember much else.
For other people with Alzheimer’s, other hobbies and habits can “reach” them as well. Be kind to yourself. Get help. I haven’t kept up with friends and activities as well as I’d like. It’s hard to do, but important. Exhaustion often takes over. But friends and family offer and want to help. Find a way to let them take your loved one out or stay with them while YOU go out. Also, letting others help you keeps those friends closer to you, keeps them in the loop. I wasn’t very good at this.”
“Adult Day Care can be your biggest help as the disease progresses, and is very good for your loved one as well. Enjoy your time off, but also use this opportunity to check out assisted living options for the future. Make appointments, talk to others at these facilities IN ADDITION TO THE MARKETING STAFF. Ask friends about their recommendations for residential facilities. Do you qualify for Medicaid? Veterans Benefits? If you decide to keep your loved on at home, call the Alzheimer’s Association. In some communities, you can get free or low-cost respite care at home. Support groups can be great, as can your local Area Agency on Aging.
Most important: ACCEPT HELP, LISTENING EARS AND LOVE. “
Commitment: How did you not snap and 'lose it' through this process? How did you care for yourself so that you were able to give so much? Basically, how did you keep your own sanity?
Mary Ellen: The jury is still out on that.
But here’s the serious answer: I believe I could withstand it because I knew it was temporary. I don’t know how husbands, wives, lovers and partners do it for an extended period of time. After four years, I am burned out and unable to do it anymore. I don’t know how my mother did it alone for more than 12 years. I want to take this opportunity to empower all caregivers to attend support groups as much as possible, call the Alzheimer’s Association to find out what counseling might be available for you, and if you can afford it or if it’s covered by your insurance, please see a therapist. Caregiving for someone with Alzheimer’s can put you in a very precarious mental state, no matter how strong you are.
Commitment: When your father had his knees replaced, his hospital experience was very traumatic for both him and your entire family. What tips do you have for those who must put their Alzheimer's family member through a hospital stay? If you had to do it over, what are some things you would have done to alleviate some of the stress and trauma?
Mary Ellen: The word “HELL” is in the title of the chapter I wrote about the hospital and for a very good reason. A major change must occur in the way hospitals treat people with Alzheimer’s. The biggest tip I can offer: DO NOT EVER LEAVE SOMEONE WITH ALZHEIMER’S ALONE IN THE HOSPITAL. Make sure that someone – a family member or some form of patient advocate - is with him/her all the time.
For some reason, many hospitals do not pass along to each member of the hospital staff that the person they are taking care of has Alzheimer’s disease. This leads to a host of problems too numerous to mention here (read my book!) Bringing photo albums, framed photos of your loved one with family members and friends, and favorite CD’s can help with the disorientation that will inevitably occur in the hospital.
I wish we had consulted with the hospital more before my father’s stay. I wish we had DEMANDED that everyone taking care of my father was informed of his disease. I wish hospitals could write “ALZHEIMER”S” on the patients door, on the hospital bed, or even tattoo the word on his forehead! But apparently there is a patent privacy problem for many hospitals that gets in the way of communicating his disease to hospital employees.
Commitment: You and your father often took rides together, listening and singing along to music. What did these moments mean to you? What other things did you do to make caring for your father something that could at times have elements of pleasure and joy?
Mary Ellen: I will always cherish our times driving in the car together listening to music. He didn’t have to worry about where to go, what to do, what was appropriate, and I didn’t have to worry about some of the things that go wrong when we are in public places. He was strapped in, safe and sound next to me, everything around us familiar. He was able to watch the world go by, with music – his favorite thing in the whole world – surrounding us. I urge anyone taking care of someone with Alzheimer’s to find a comfort zone, and make the most of it.
Other things my father enjoyed was going to concerts and restaurants. It wasn’t always easy. But I am amazed how much he remembered about “appropriate behavior” when he went out. it’s hard -wired. He still puts his hand out to shake stranger’s hands and introduces himself. He often says “wonderful to meet you!” I am convinced these activities bring him back in to the world
Commitment: The summer time vacations your entire family spent at the lake sounded so idyllic. Can you share with us what this time meant to both yourself, your mother and father, and what lessons does that time as a family have when it comes to Alzheimer's?
Mary Ellen: This lake (where I am writing to you from right now) is where our family has always gathered, each summer. It is where we join together on holidays. It’s where we sing together. My Grandfather and Grandmother spent summers here, too.. My older sister was married here. I feel my father senses the history and love in this place. Just the summer before last, we put my father at the helm of the float boat and had him drive. He seemed to remember how to do it right away.
We also try to connect him with familiar sports. Just the summer before last, he played tennis with us. He even threw a Frisbee with us. (It’s hard to imagine right now because he is so frail.) We took him to the country club where he used to golf. The whole family came up to the cottage. Perhaps we all knew this would be the last time. He really enjoyed it. He would come out on the dock and have breakfast with all of us. He went with us on boat rides. We took him out to dinner. I know that time was exhausting and difficult for my mother, but everyone in the family helped to care for him. I am so glad we had that last summer together. My sisters, my brothers-in-law, Woody’s three grandsons, my mother and I : we all have wonderful memories of that last summer together on the lake. It was a very special time. I felt like everyone got to say goodbye.
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About the Author: Mary Ellen Geist grew up in a farmhouse in the country outside of Detroit, Michigan. She graduated from Kalamazoo College with a degree in English and studied abroad in Sierra Leone.
She has been a broadcast journalist for more than 20 years, at radio stations in Los Angeles, San Francisco, and New York. Her many honors have included national and regional awards, including the Edward R. Murrow Awards for best newscast and investigative reporting and Associated Press Awards for best newscast, live coverage, investigative reporting, and Reporter of the Year.
In February of 2005, Mary Ellen left WCBS Radio in New York to return home to Michigan to help her mother care for her father, who has Alzheimer’s. Her book, “Measure of the Heart,” which was released this past August, describes her experiences with her father during these years. Mary Ellen has been interviewed by national and local media across the country about her book and experiences, including interviews with the Today Show, the Diane Rehm Show on National Public Radio, Reader’s Digest, and Caring Today.
Mary Ellen has just been selected as one of the top twenty 2009 Michigan Notable Authors and will be touring libraries throughout the state this spring. “Measure of the Heart” was on AARP’s “Best Book List” for the month of September and has been selected as one of the Best Books for Caregivers. The book was also chosen to be read for the nationwide Public Radio program, “Radio Reader.”
Mary Ellen has been lecturing about the gifts of coming home to help take care of a loved one with Alzheimer’s disease and about the special connection music can create between caregivers and people living with Alzheimer's. Mary Ellen believes that music has a positive impact on people living with the disease, and as a result of the book, a capella singing groups throughout the nation have begun organizing visits to residential facilities for people with Alzheimer's and nursing homes.
She can be reached at http://www.maryellengeist.com