Alzheimer’s scares me. I suspect it does many people. I cannot hardly think of anything more devastating or tragic than having your mind slip away or watching helplessly as a loved one’s mind fades into confusion, and ultimately oblivion. All of which is to say I was a bit queasy when I got the assignment to profile a woman with Alzheimer’s, or more accurately to profile a family and their odyssey with the afflicted loved one in their care. But I was struck by the love this family has for each other and for their beloved Lorraine, who was variously a wife, mother, grandmother to them. The way they rallied behind her is a testament to the family. Of course, not all families are as close or loving, and not all Alzheimer’s victims are fortunate to have such attentive support. If you’re in the mood for a sentimental story that is based in fact, than this might be your cup of tea. The piece originally appeared in the New Horizons.
I’ll Be Seeing You, An Alzheimer’s Story
©by Leo Adam Biga
Originally published in the New Horizons
I’ll be seeing you in all the old familiar places, and in all the old familar faces…
Blessed with the voice of an angel, the former Lorraine Clines of Omaha enchanted 1930s-1940s audiences with her lilting renditions of romantic ballads as the pert, pretty front singer for local bands. Billed as Laurie Clines, she was also featured on WOW radio’s “Supreme Serenade,” whose host, Lyle DeMoss, made her one of his “discoveries.”
From an early age, she used her fine singing voice to help her poor Irish Catholic family get by during the Great Depression — winning cash prizes in talent contests as a child and, after turning professional in her teens, earning steady paychecks singing with, among others, the Bobby Vann and Chuck Hall orchestras at area clubs and ballrooms. After the war, she gave up her performing career to marry Joe Miklas, an Army veteran, semi-pro baseball player and Falstaff Brewery laborer. The couple raised seven children and boast 17 grandchildren.
The memories and meanings bound up in such a rich past took on added poignancy at a recent Miklas family gathering during which Lorraine, a victim of Alzheimer’s Disease since 1990, sang, in a frail but charming voice, some standards she helped popularize in the big band era. Her family used the occasion to preserve her voice on tape, thus ensuring they will have a record of her singing in her senior years to complement the sound of her voice on platters she cut years before. While even advanced Alzheimer’s patients retain the ability to hum or sing, Lorraine has clung to music with an unusual ardor that reflects her deep feeling for it and the significant role this joyous activity has played in her and her family’s life.
“There was always music in the house — singing, records, dancing,” daughter Kathy Miklas said. “When we were little we each learned two songs Mom recorded, “Playmate” and “Little Sir Echo,” and we all learned how to dance to “Ball and the Jack.” At their mother’s insistence, the Miklas kids took piano lessons and at their father’s urging, they played ball. “We really were lucky Dad loved sports and Mom loved music. It was a great combination. They made sure we did both. It was a nice foundation to have,” daughter Theresa Ryan said, adding the family participated in neighborhood talent shows and competed in softball leagues as the Miklas team.
Even though she went from headliner to homemaker, Lorraine never stopped making music. She harmonized doing chores at home. She sang lullabies to her kids. She broke into tunes on holidays and birthdays. Away from home, she taught music at St. Adalberts Elementary School, vocalized in the church choir, led singalongs on family road trips and performed for her children’s weddings. Ryan said she and her siblings knew that whenever Mama made music, she was in a merry mood.
“You would get a yes if you asked her a favor while she was singing. You knew that was a good time.” Even now, despite the ravages of Alzheimer’s, music continues to hold a special place in Lorraine’s mind and heart. In a reflective moment one September Sunday afternoon Lorraine commented, ‘We gotta get all the music we can.” And then, as if remembering how music enriched life for her and her family despite scant material comforts, she said, “We haven’t had a lot of other things, but we sure have had a lot of music.” Accompanied on piano by Carolyn Wright, Lorraine found most of the words, with some prodding from husband Joe, to ballads like “I’ll Walk Alone” and “Girl of My Dreams.” When she got around to singing the bittersweet “I’ll Be Seeing You,” which is about being true to an absent loved one, Joe broke down in tears — the lyrics hitting too close to home.
“Not having her around” is the worst agony for Joe, who loses a little more of his wife each year. “It’s hard to live alone,” said Joe, breaking down with emotion. As he has seen Lorraine slip further and further away into the fog that is Alzheimer’s, he has had to content himself with memories of “the good old days.” He said, simply, “We had some good times.” A son, Joe Miklas, Jr., said the cruel reality of the degenerative disease is that it feels like losing a loved one, only the afflicted is not dead but stranded in a dementia that makes them increasingly unreachable. unknowable, unrecognizable. They are present, yet removed, their essence obscured in a vague shadowland of the mind. “Physically, she’s there, but she’s not Mom anymore. We’ve lost our mother and yet she’s still here.” Kathy Miklas describes the experience as akin to “a slow grieving process.”
Bill Miklas, the youngest among his siblings, is convinced his mother is, on some level, aware of the prison her impaired brain has confined her to, although she is unable to articulate her predicament. Evidence of that came only last year when, Kathy Miklas said, her mother confided to her, “‘I think something’s wrong with me, but I don’t know what it is. It makes me feel bad that people are having to do things for me that I used to have to do for them.’”
The sad thing, Bill said, is “this disease has forced her to be isolated, not only from those around her, but from herself. She has to live within her world. She has to travel this journey, for however long, by herself. It must be very frustrating to her to realize when she talks she’s not making sense. She can see the reactions on our faces, but her pride won’t allow her to show she’s debilitated. It’s hard for her to look me in the face and say, ‘I don’t remember your name.’ Yet even as debilitating as this disease can be…she still likes to sit and talk, and she’s still a happy person.”
As Alzheimer’s evolves, its victim presents changing deficiencies, behaviors and needs. Mirroring the patient’s own journey are the changing emotions and demands felt by family members. Just as no two sufferers are alike, the experience for each family is individual. Every step of the way, the Miklas clan has made Lorraine’s plight a family affair. “Everybody just kind of took their part in it and did what had to be done,” said Ryan. “I don’t know what I would have done without them,” Joe said of his family’s pitching-in. Not everyone always sees eye-to-eye on how to handle things, but the Miklas’s remain united in their commitment to do right by Mom. And, no matter what, they’ve stuck together, through thick and thin, in illness and in health. “We’ve kind of become our own support group,” Joe, Jr. said. “We don’t always agree, but we always communicate, which is the key.”
Married 54 years, Joe and Lorraine hail from a generation for whom the vow “for better and for worse” has real import. That’s why when she was stricken with Alzheimer’s he put his life on hold to become her primary care giver at the couple’s home, where she continued living up until about a year ago. Lorraine’s first symptoms were shrugged off as routine forgetfulness, but as her memory deficits and confused states grew more frequent and pronounced, her family could no longer ignore what was going on. It all began with Lorraine making repeat phone calls to family members without knowing who she was dialing and not remembering she made the exact same call just minutes before.
Ryan said, “At first, we laughed it off among ourselves. It was like, ‘Oh, did Mom call again to ask who’s making the turkey for Thanksgiving? I told her 10 times.’ And then, we got a little upset with her. We’d say, ‘Mom, would you pay attention. You’re just not listening.’ There were other signs. Normally a precise, productive person who kept on top of her large family’s many goings-on, she could no longer keep track of things. She let the house and herself go. She grew disorganized. And she seemed to just shut down. “I think one of the things we first started noticing is that she just wasn’t doing as many things as she was doing before,” Kathy said. “One of the striking differences was she’d always been very organized and efficient” but not anymore.
Concerned, Kathy convinced her mother to be evaluated by the University of Nebraska Medical Center geriatric team. “When the doctors said she didn’t have any physical reason for this — that it’s probably Alzheimer’s — I was totally shocked,” she said. The entire family was. Lorraine went on living at home with Joe. “I think our family…was in denial,” Bill said. “We didn’t want to mention Alzheimer’s in front of Mom. I think a lot of us thought there was a mixed diagnosis. That, you know, it’s not really Alzheimer’s — Mom just forgets things. It’s not that big a deal.” From denial, the family gradually accepted Lorraine’s fate, the diminished capacity that accompanies it and the demands her care requires.
To get to that point, however, the Miklas children first had to come to terms with how their mother’s condition was affecting their father. “We were all kind of going on with our lives,” Ryan said, “but I don’t think we were focused too much on the disease because Dad was there to do the day to day caring.” As the disease progressed and Lorraine grew more unmanageable, the job of caring for her 24/7 consumed Joe’s life. He halted his active recreational life to attend to her needs. “Dad started to give up a lot of the things he likes to do,” Ryan said. It got so that it was dangerous leaving her alone, even for brief periods, and no longer possible for anyone untrained like Joe, now 79, to always be on call. Overwhelmed by it all, he could no longer hack it alone, and that’s when the family began the long, winding odyssey to find the right care giving situation.
Kathy, a private practice speech-language pathologist, steeped herself in Alzheimer’s — from possible causes to drug therapies to support services to care providers. “I felt like I could deal with it better if I understood it. So, I started talking to the Alzheimer’s Association and reading lots of stuff. As a family, we shared information about what Alzheimer’s is and what goes on with it. I didn’t want to miss an opportunity to do something or to have something because we didn’t know about it.”
Family members also attended conferences to glean more understanding — from health professionals and family care givers alike — about what to expect from Alzheimer’s and what adjustments the family could make to ease things for themselves and for Lorraine. For further insight about her condition and how to manage it, they consulted one of the world’s preeminent Alzheimer’s experts, Dr. Patricio Reyes, director of the Center for Aging, Alzheimer’s Disease and Neurodegenerative Disorders at Creighton University Medical Center. “We just lived and made adaptations and accommodations as needed,” Kathy said. “We knew not to ask Mom to do certain things because she wouldn’t remember them and we reminded her to do things she maybe still remembered how to do.”
The family explored several care giving options: first, enrolling her in a respite day care program; next, arranging for a home health nurse to come each morning to assist with her personal needs; and, then, when respite/home care was no longer sufficient to accommodate her unfolding illness, they sought more intensive aid.
“In November, we decided it was not a good idea for Dad to have to constantly be on duty all the time,” Kathy said. “We could see his health deteriorating from the stress…so we started looking at nursing homes.” Lorraine was placed in one, but the family found its medically-based approach and strictly-regulated environment stifling for their mobile, verbal, social mother, who felt uneasy in such a restrictive setting.
According to Kathy, the site “just wasn’t set-up to handle somebody like Mom. They had everybody get up at seven, eat breakfast at eight and go to bed by seven-thirty. Well, having been a singer — Mom never gets up at seven and she’s used to going to bed at about one o’clock in the morning. Plus, they had her heavily medicated. One night, they called and said, ‘Your mom is having a behavior episode we can’t manage.’ Well, I got there and she was having ice cream with a nurse. She was fine. Mom was very frustrated because in her mind this was her house and at night she got terrified. She would ask, ‘Why are all these people in my house?’ After a month of that place, we decided it wasn’t working out.”
Searching for the best care facility for a love one means weighing many complex issues and making many difficult decisions, not the least of which are financial. Although the nursing home was unsatisfactory, it did have the advantage of being Medicaid certified. As the Miklas’s looked around for an alternative, they discovered most quality care centers do not accept Medicaid patients, are cost prohibitive on a private pay basis and, even if the family could afford to pay privately, they would face a two or three-year waiting list.
“We were struggling with what we were going to do,” Kathy said. That’s when they found new hope and the right fit in Betty’s House, a residential assisted care facility, where Lorraine resides today. Where, at the large, institutional nursing home, Lorraine was anxious and irritable, the family has seen “a dramatic difference” in her mood at Betty’s House, Kathy said, adding: “It’s been a godsend. It’s small and home-like, not like a nursing home. The lady who runs it, Mary Jo Wilson, cared for her own Alzheimer’s-sticken mother for 10 years. She knows how to do Alzheimer’s. She knows what you say, when you argue, when you don’t argue, what’s important, what’s not important and she teaches her staff…that you give residents praise and tell them how happy you are they’re there, and I really think that positive feedback is part of the reason Mom’s been so calm and so happy the past few months. She’s doing well.”
And, relieved from the pressure of daily care giving, Joe Miklas began doing better, too. “Now, he can relax,” Kathy said.
Joe is just relieved Lorraine is situated where she seems at peace. “She’s safe. She seems to be happy,” he said. “They’re very good out there. The owner does a hands-on job. She’s always around, supervising things. She’s got some good help. It makes a lot of difference. I try to make it out there every other day if I can. Lorraine talks about coming home, and I’m not sure whether she has this (he gestured to mean their home) in mind or what. I thought she considered that (Betty’s House) her home. It’s hard to know.”
He does know she’s content whenever she breaks into song, as she did upon overhearing a conversation he had with another visitor to Betty’s House. “We got to talking about music when Lorraine suddenly sang ‘When Irish Eyes Are Smiling’ and she just took it up right from there.” Anything Irish elicits a response from her, said Kathy. “She’s always been passionate about her heritage. St. Patrick’s Day was a big day at our house. She’d sing Irish songs. Even now, when you mention something about being Irish, she’ll go into her version of an Irish brogue” and maybe start up a song.
Music remains a vital conduit to the past. “Still, in spite of all the things she can’t do, if you put a microphone in front of her, she turns into Laurie Clines, the singer,” Kathy said. “Her body moves as a singer. Her voice changes and her intonation, her breath and her rhythm become that of the singer again.” This transformation was evident the night son Tim Miklas appeared with his band, the Pharomoans, at Harvey’s Casino. “I went down into the crowd where Mom was and we sang “When Irish Eyes Are Smiling” together. That was pretty special,” Tim said.
Family and faith have defined Lorraine’s and Joe’s lives. Growing up within blocks of each other in south Omaha, each lost their father at a young age and each began working early on to support their family during tough times. They attended the same school and church, St. Adalberts, but didn’t start dating until after the war.
“I thought she was the prettiest girl in school,” Joe said, “but I didn’t think I had a chance to get a date with her, so I just kind of put it out of my mind.” After marrying and starting their own family, the pair made sure all their kids attended parochial school, scraping together the tuition from his modest Falstaff salary, and even saved enough for family vacations. “Family was very big to her and she passed that on,” Theresa Ryan said. “I think they both wanted that family environment and worked very hard to achieve it.” Bill Miklas added, “One of their man ambitions was to raise a great family, and I think they did a wonderful job.”
Through the process of Lorraine’s sickness, the Miklas’s, always close to begin with, have drawn ever closer. If there’s anything they’ve learned about dealing with a loved who has Alzheimer’s it is, Tim Miklas said, “to try to maintain the courage to go on and make sure that person is still a member of your family. Maintain your relationship with that person as much as possible. At some level, some of the things get through to them.” Whatever the family occasion, Joe knows his wife still “wants to be part of it, that’s for sure.”
Kathy Miklas advises others to “really value the time and the experiences you have with your loved one because you don’t know what it’s going to be like three months or six months from now. Like many people with Alzheimer’s, physically Mom’s going to last a lot longer than she is mentally.” Another piece of advice she has is: “Give people choices. Give people dignity and the ability to have some control over their lives. For example, giving my mother the choice of when gets dressed eliminated a lot of arguments.”
In the end, this Alzheimer’s story is about the enduring love of a man and a woman and of a resilient family. “Theirs was a very subtle love,” Bill Miklas said of his parents. “It was something you always felt. The same with the faith they lived. It was a constant. There was never a question — never a doubt. It was a very stable reality. I think Mom taught us a lot about faith and about commitment — to ourselves and to our family. She taught us not to focus on what you don’t have but to enjoy what you do have and to find the value in that. Somehow, if I can take that to my family than that will be Mom’s greatest legacy.”
I’ll see you in the morning sun and when the sky is grey. I’ll be looking at the moon, but I’ll be seeing you…
- ‘Memory Show’ a sweet, painful portrait of Alzheimer’s toll (boston.com)
- Caring for a Loved One With Alzheimer’s: New Insight on Memory Care (health.usnews.com)
- Test may catch Alzheimer’s in earliest stage (abclocal.go.com)
- Maria Shriver Raises Awareness of Alzheimer’s Disease (psychologytoday.com)
- Progress made on blood test screening for Alzheimer’s (ctv.ca)
- Half of All Alzheimer Cases Might Be Preventable (newser.com)