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Don’t do it alone: how one man learned to reach out for help during his experience as an Alzheimer’s caregiver
When former Wisconsin governor Martin J. Schreiber realized his wife Elaine’s Alzheimer’s diagnosis was being proven out by her increasing need for memory care, he did what many resourceful men do when faced with a similar situation: he committed himself to taking care of her, body and soul. But later in his caregiving journey, he realized he had been unaware of readily available and often invaluable resources at critical times.
So Marty decided to share his experience in his recent book, My Two Elaines Learning, Coping, and Surviving as an Alzheimer’s Caregiver (Schreiber, Martin J., Breitenbucher, Cathy. Bothell, WA: Book Publishers Network, 2017. Print.). We are fortunate that he agreed to grant us this interview, explaining in a compellingly humane and compassionate voice the challenges, heartbreaks, and joys that he experienced during his journey with Elaine.
Written for men, but instructive and appropriate for all caregivers
In the preface to My Two Elaines, Marty explains that “sharing this message man-to-man was a primary objective.” (xvii) But readers given the opportunity to review the manuscript in advance pointed out that the book could help a wider audience, because the issues it addresses are pertinent to nearly all Alzheimer’s/dementia caregivers.
I asked Marty how the specific idea of a man in the role of caregiver sparked the inspiration to put his experiences down in a book. His reply was wonderfully typical of his responses throughout our interview: candidly and humorously thoughtful, self-effacing, and immediately comprehensible: “I think it began with the understanding that I wasn't very bright and that I made any number of mistakes. Men don't like to ask for directions. We're heroes. We gather, we hunt, we do all of those things. And then, when a loved one comes down and is diagnosed with dementia, we don't realize what a challenge it is, and what happened was with Elaine's diagnosis, I think up until that point, and maybe even today, we failed to realize that there are two patients when there's a diagnosis with dementia. There is a person with dementia, then there is the caregiver. And we've got to understand that the caregiver must realize they can't do it alone, but they also have to understand more of the disease.
And it seemed that women as caregivers were better able to understand, yet many women have told me that this was extremely helpful. But sometimes we men are arrogant, we're self-centered, and we're too proud, and we think of ourselves as being too manly and therefore because of that we wanna do it alone, and that's a disservice to the person with dementia. And also it's a disservice to the caregiver himself and to the family and to the loved ones.” (2:23)
The emergence of the second Elaine
In the book’s introduction, Marty describes the transformation he witnessed in Elaine, startling changes in behavior and personality which people thrust into similar caregiving roles will recognize: “While on your journey, your beloved partner will be replaced by someone with the same name in the same body. Your loved one’s mind will be even more different than you can imagine. As time passes, his or her memory will be erased to such degree that most of the memories of your life together are partially missing or completely gone. You will experience someone behaving and talking in a manner completely different from the person you have known and loved.” (xxv) But even in this dire scenario, Marty can’t help but let his essential warmth inform the experience, writing that “Even with Alzheimer’s disease, Elaine remains as kind, gracious, loving, and self-sacrificing as any person could be. But she is not the same person. My First Elaine gave way to my Second Elaine.” (xxi)
Practical applications in My Two Elaines: “What I wish I’d known,” and “What I wish I’d done.”
My Two Elaines is organized into three sections that correspond with the title of the book. The first section is titled “Learning about Alzheimer’s Disease,” the second “Coping with Alzheimer’s Disease,” and the third “Surviving Alzheimer’s Disease.” The sequence of events described in these sections is largely chronological, beginning with the recognition of alarming changes in Elaine’s behavior and ending with the great difficulty of moving Elaine to a place where she receives constant memory care.
As he tells us in the introduction, the overarching goal of writing the book is to act as a trail guide for caregivers undergoing a similar journey. Interspersed throughout these sections and their component chapters are graphics of post-it notes that caregivers can learn from and act on right away. They are organized in two categories, “What I wish I’d known,” and “What I wish I’d done.” Contained in these concise, important messages are resources, strategies, and concepts critical to providing better understanding in the caregiver and better outcomes for the person receiving care. They are as follows, taken in order from the pages of My Two Elaines:
|What I wish I’d known.
||What I wish I’d done.
|A person with Alzheimer’s will experience diminished mental capabilities at a rate of three to five points per year on the MMSE (Mini–Mental State Examination) scale. But, it doesn’t happen in a predictable way. (8)
||Right away, I should have taken full advantage of all that the Alzheimer’s Association® has to offer. Besides support groups, there is individual counseling—plus online tools and information. (14)
|Chronic stress experienced by Alzheimer’s caregivers may shorten their lives by as much as four to eight years. (31)
||I should have started earlier to search out adult daycare so that I could reclaim part of the day for myself, including time for exercise. (34)
|The fact that family and friends can’t fully understand what a caregiver is going through is not a good enough reason to avoid them. (43)
||From the beginning, I should have shared more information about Elaine and concerns about my ability to cope so that I could focus on surviving. (46)
|Unfamiliar settings such as hotels can be particularly upsetting to people with dementia because they have trouble re-orienting. (51)
||I should have paid more attention to reducing my stress so that I wouldn’t become irrationally irritable, distracted, and forgetful. (56)
|The Alzheimer’s Association has information on local programs and care centers. On alz.org, find the search field at the top of the home page, and type in “community resources.” (67)
||I should have worked to find a healthy outlet for my own sadness and fearfulness, so that anticipatory grief wouldn’t limit my day-to-day functioning. (71)
|Asking others to help does not mean you’re not strong enough or not trying hard enough. (78)
||I should have enlisted a couple friends to be my team captains who could do the asking and scheduling for me. (80)
|You’re a healthier, happier, and more helpful caregiver if you are less confrontational. (86)
||I should have used my wife’s frame of reference instead of challenging it. (88)
|Alzheimer’s is a disease of inactivity of both mind and body. As it progresses, the person with the disease becomes slower and less capable. You can try familiar activities, but you need to accept when the brain can no longer process the information. (94)
||By wishing for the past, I had deprived my wife of happiness in the moment. Even though it broke my heart, I should have let go of my First Elaine sooner, so I could love my Second Elaine where she is now. (96)
|When your partner gets an Alzheimer’s diagnosis, it’s important to get started on a bucket list of things you want to experience together. Prioritizing helps you feel comfortable later on when you are alone and must do things without your spouse. (102)
||I should have forgiven myself for not being perfect because I was doing the best I could in a difficult situation. It’s understandable to have regrets about my shortcomings, but there is no point in feeling guilty. (106)
“A widower with a wife”
Virginia Pflanz, former director of sales operations for CPI’s Dementia Care Specialists division, also participated in the interview. Near its conclusion, she observes, “You referred to yourself at one point in the book as ‘a widower with a wife,’ which I could see some people sort of thinking, ‘Oh my goodness, that's a big thing to say.’ But I imagine that is something that resonates quite a bit for people who are caregivers like you and for people who are sharing that experience.” (34:36)
Marty is quick to acknowledge the painful reality of the situation, but also offers other bereaving caregivers words of commiseration and support: “My first Elaine is gone. And with all the pain—and so because she's gone, I just have to move on . . . . But one of the things that really is a challenge, and I think one of the reasons caregivers have such a difficult time emotionally, and I want to be very careful how I say this because I don't ever want to hurt anyone or offend anyone. But if there is a sudden death by heart attack, there is an immediate acknowledgment for the grieving, and there is almost an immediate closure because you know for better or for worse that person is gone, and because of that, life, better or for worse, continues for those who are surviving.
With Alzheimer's, there are many times there's not the acknowledgement because people really don't understand what you're going through, but then there also really is never closure. It's a constant kind of changing and watching this person devolve. And I won't use the word evolve, but change into someone different. And so you don't get that closure, and so you try and work it out as best you can. But I think if more of us caregivers could understand that somehow or other this whole area of bereavement is something we have to work about coming to grips with because the better we can handle that bereavement, I think the better we can go on with our lives, but also the better caregivers we could be.” (34:58)
Irrational irritability, therapeutic fibbing, and what surviving looks like
Listen to or watch the podcast to learn about other common experiences Marty discovers on the caregiver’s journey, including the pitfalls of irrational irritability, the value and acceptability of therapeutic fibbing, and, finally, a living testament to what surviving as an Alzheimer’s caregiver looks like.
Martin James “Marty” Schreiber (born April 8, 1939) is an American politician, publisher, and lobbyist, the 38th lieutenant governor of Wisconsin, and the governor of Wisconsin from 1977 to 1979. Active in seeking political office from his successful bid for the Wisconsin State Senate in 1963 until his run for mayor in Milwaukee in 1988, Schreiber was also a tireless campaigner for other national leaders such as Bobby Kennedy and Jimmy Carter. During his political career, Schreiber focused on consumer protection, education, and the rights of workers and the elderly. After his political career he became an executive for Sentry Insurance, and later, a successful lobbyist and public affairs consultant.
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