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A Caregiver Who Dances in the Rain

Alzheimers: It’s ‘not a tuna casserole disease’

Martin “Marty” Schreiber knows a thing or two about tackling a tough job. As a governor, he oversaw a $1 billion-plus budget, shepherded key legislation through the State House, and was ultimately responsible for responding to any crisis that might arise in the state of Wisconsin. A stressful position to be sure, but, as Schreiber discovered, not nearly as harrowing as being a caregiver for a spouse battling Alzheimer’s Disease (AD). 

Starting in 2005, Schreiber watched as the memories of more than 40 years of marriage slowly began to slip away from his beautiful wife Elaine, his high school sweetheart who went on to be his wife, the mother of his four children, a dedicated NEA-represented Milwaukee public school teacher, and a constant source of support and laughter. Today, she clearly loves a man who is deeply devoted to her, but she can’t recall all the reasons why. 

It’s an anguish known all too well. In the U.S. alone, some 5.5 million suffer from Alzheimer’s, but, of course, the shadow cast by the disease is far wider, as family members also are so deeply affected. No one’s life, however, changes more so than that of the primary caregiver. 

A Love Story and More

While much has been written about the ordeals associated with AD and other forms of dementia, Schreiber (with Cathy Breitenbucher) has authored a book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, which is difficult to neatly categorize into one literary genre. It’s part love story (“If you believe in love at first sight, then I fell in love with Elaine Ruth Thaney in the fall of 1953”);  part guide for caregivers (“Chronic stress experienced by Alzheimer’s caregivers may shorten their lives by as much as four to eight years”); and part manual for those on the outside looking in (“Alzheimer’s is not a tuna-casserole disease…People don’t usually think of offering rides or meals or help with yard work to an Alzheimer’s caregiver”). 

One thing is for certain though, Schreiber’s book is 100 percent non-fiction and is written in a no-nonsense fashion. As Schreiber, who served as Wisconsin’s lieutenant governor and then governor in the 1970s, says, “Not one of the books I read conveyed the ugly truth about caregiving: that it can destroy you—even kill you—if you go about it wrong.” 

As the title suggests, My Two Elaines (available on Amazon and at mytwoelaines.com) not only chronicles how AD robbed Schreiber of the woman he married 56 years ago, it also illustrates how it gave him his wife of today, a woman he loves even while he grieves for another.  Schreiber puts it this way, “I have hoped, laughed, and cried with both of them…and I now have had to acknowledge that the future will not unfold the way I thought it would.”  

“There’s no question, it’s a sad story, but there’s enough heartbreak out there,” explains Schreiber. “I wrote the book because I wanted to share what I learned with other people who find themselves in the same position I did. As a caregiver, it’s hard to know what is happening to you. The disease is so gradual. The person you love is slowly turning into someone you don’t even know. The caregiver is left dealing with anxiety, depression, and grief.”

More than One Victim

Negative emotions get the best of anyone, and Schreiber—even though he has four loving adult children, an office full of supportive professional colleagues, a wide number of life-long friends, and financial stability—was no exception. The daily routine of ensuring that his wife was fed, clean, dressed, safe and happy took a physical toll that led to a multitude of tests, and procedures—including installing a pacemaker—totaling approximately $250,000 in medical expenses. After years of being in and out of the doctor’s office and the hospital, the culprit of his maladies was finally revealed: the stress and strain of dealing with loneliness and trying to be a “hero” to a victim who couldn’t really be saved. 

The final “diagnosis” was the wake-up call he needed to stop trying to do everything on his own, and feeling guilty when he couldn’t.  

“Because caregiving is a 24/7 job, it’s easy to lose contact with friends. Your relationships at work change and exercise and activities come to an end. Caregivers tend to beat themselves up on a daily basis. At some point, we need to realize that all of the navies sailing and all of the armies marching aren’t going to change the course of AD. It’s crucial to get information and get help where you can.”

Dancing in the Rain

Schreiber recommends starting with a local Alzheimer’s Association office, something he didn’t do until Elaine had declined considerably. He credits the office in Milwaukee with providing him with the tools he needs to be successful in caring for both Elaine and for himself. It’s where he found support, strategies, and solace. As he so fully articulates, it’s where he learned that “rather than waiting for the storm to pass, you need to learn how to dance in the rain.”

Schreiber is one of those people to whom a laugh seems to come easily. There’s an eagerness in his voice and almost certainly a bounce in his step. Still, even the cheeriest optimist would find it difficult to find joy in a neurological disease that purloins the past, puts pressure on the present, and fills the future with doom. But that’s what Schreiber has managed to do, at least most of the time. 

He has also learned to laugh again, often with Elaine. He explains that his wife, who recently moved to a memory care facility, has a wry sense of humor and will even curse now and again, something his first Elaine would never do. 

Dancing in the rain also means doing everything possible to see his wife’s familiar smile even if that means engaging in “therapeutic fibbing.” For example, when his wife asks about her deceased parents, Schreiber tells her that they are doing well and looking forward to seeing her. The satisfaction on Elaine’s face lets him know he is doing the right thing.

If Schreiber needs any further confirmation of his devotion, he need only to read the notes that Elaine left for him. In notes, diary entries, and letters to loved ones that she began writing when she was first diagnosed, Elaine makes clear that she “needs to rely on Marty for everything.” Schreiber discovered the handwritten messages as he was completing his manuscript. The sentiments she wrote, often found in random locations and at various times, were like notes on a roadmap that led back to Schreiber’s heart. 

Navigating through the pain of Alzheimer’s is not going to be easy. It isn’t for anyone. But, as Schreiber shows, a caregiver can survive the disease that he says is a “death by a thousand cuts.” After all, as he adds, “…there are Band-Aids for these cuts—resources and help of which you must take advantage.” 

To reach the Alzheimer’s Association at any time, call the helpline, 1-800-272-3900, or visit alz.org.


Schreiber’s Tips for Loving and Effective Caregiving

Get help. As soon as your loved one has been diagnosed with Alzheimer’s, contact the Alzheimer’s Association 24/7 helpline (1-800-272-3900). There, you will speak with men and women who are trained to provide education, support, and strategies for dealing with the disease. 

Remember to take care of yourself. Think of the “oxygen mask” analogy: During an airplane emergency, we are asked to put on our own mask before helping others. It’s true in caregiving too. The task can be all-consuming, but it’s vital that you continue to eat well, exercise, and keep up with your own medical and dental appointments. It is also important to maintain your own friendships and professional relationships, to whatever extent is possible.

Be understanding about how others cope with having a loved one with Alzheimer’s. Don’t lay “guilt trips” on those who distance themselves from the person who has been diagnosed. Remember, everyone employs unique coping strategies when faced with a crisis. Learn to accept and appreciate whatever others can give.

Laugh! It doesn’t just lighten your mood, it also has real health benefits. According to the Mayo Clinic, laughter stimulates your major organs and increases endorphins to the brain. It also stimulates circulation and muscle relaxation. 

Practice effective communication. Utilize strategies, such as what Schreiber calls “therapeutic fibbing.” The bottom line is that you want the person who is battling AD to feel loved and content. 

Confide in someone. It’s important to talk to someone about your feelings. A close friend, a support group, and/or a therapist are good options to consider. 

Visit your loved one when you can. Don’t feel guilty if you’re not up for a visit. Everyone needs to take a step back now and then. Your loved one may pick up on negative moods, so avoid visits if you are in a “bad place.”

Support efforts to increase funding for Alzheimer’s research and services. Funds are crucial for finding a cure and for providing much-needed services. Back political candidates who fight for robust funding for medical research, and give what you can to such organizations as the Alzheimer’s Association. 

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1-Aug-17

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