On the Record with former Gov. Martin Schreiber

As his wife’s Alzheimer’s disease progressed, former Gov. Martin Schreiber realized she was no longer the same person he once knew.

“You’re dealing with a new person,” said Schreiber, who currently leads a public affairs consulting firm. “You’ve got to enter their world for there to be some kind of a better outcome, of a better atmosphere, and even a chance for moments of joy and happiness.”

To help caregivers, Schreiber has co-written a book detailing his experiences with Elaine. It offers advice to caregivers, highlighting what he wish he had known as he became a caregiver.

“I tried to develop something of a practical nature because many of the books that I saw were more technical,” he said. “From the standpoint of practically dealing with the disease I thought there was something significantly lacking.”

Schreiber recently spoke with Wisconsin Health News about the book, “My Two Elaines: Learning, Coping and Surviving as an Alzheimer’s Caregiver.”

Edited excerpts below:

WHN: Why did you decide to write this book?

MS: In the course of experiencing life as a caregiver and now looking back, I concluded that if there’s one thing worse than Alzheimer’s, it’s ignorance of the disease. And it’s really what I wish I would’ve known sooner. I experienced some significant health problems, and I also failed to understand the impact of the disease. I decided that I wanted to have people understand this disease, so that they can cope and survive the heroics of caregiving but, along with that, to make life for the person with dementia, as well as life with the caregiver, easier. Because unless you understand, for example, that you can’t argue with Alzheimer’s, life could be extremely unhappy with the combative nature of people insisting that they’re right when one of them doesn’t understand that the brain of the person with dementia is broken.

WHN: How did caregiving affect you?

MS: What happened is you unknowingly morph from a loving husband to a caregiver. And you don’t know exactly when that happens. But all of a sudden as you get involved in caregiving, it consumers your life 24/7. Because of that, you don’t spend the time taking care of yourself. You don’t spend the time trying to be healthy. And the really criminal part about that is contrary to what they tell you when you get on an airplane and that is, “Put on your own oxygen mask first.” So as I’m turning into a caregiver, I’m becoming ill. There’s no question that there’s a grieving and a depression and anxiety that’s setting in. But you don’t realize that’s all happening and it’s taking its toll from a standpoint of how you’re looking at the world mentally but also how your own health is impacted. If you just start out as a loving husband, trying to do your best, and all of a sudden you’re 24/7 caregiving, nobody’s set up for that. You can’t do it without help.

WHN: What kind of burden does this have on our society?

MS: First of all, they’re talking about a cure in 2025. That’s completely unacceptable. We have got to increase the amount of funding for research that’s going into fighting this disease. Now let’s talk about some of the tolls: Alzheimer’s is the sixth leading cause of death among the top 10. But it is the only disease that cannot be prevented, cannot be cured and cannot be delayed. So it’s there. And the death sentence so to speak is pronounced. And what happens then is that the caregiver is involved in trying to make things go well and that affects that caregiver’s health. It affects the longevity of their life. It affects the quality of their work performance. Chances are it’s getting near exhausting people’s savings. It’s going to impact their retirement and take a significant toll. And it will continue.

Now with the increased impact on negative health, the health insurance companies should be looking at this and saying, “Wait a minute. We’ve got to be doing something to better help the caregiver.” Because it’s shown over and over again that a caregiver experiences significant greater healthcare costs. If the caregiver has significantly greater healthcare costs, it means that the caregiver is going to be less able to help out the person with dementia. Then society loses on both ends along with the negative impact of what may happen to that person’s job in the workplace because of the extra anxiety, tensions and pressures brought about by caregiving.

WHN: What should policymakers do?

MS: The state is beginning to make an effort by establishing the dementia friendly workplace. The state website helps an employer understand a little bit more about what can and should be happening in order to help a caregiver not only maintain their productivity and quality of work performance but at the same time help the caregiver get through all of this. So once we’re able to do that, the projection about the number of people with Alzheimer’s is increasing and that’s going to have a significant impact on depleting our resources at assisted living facilities, memory care facilities. And I think the state also should be involved in more directly working with Congress to continue the pressure, to get the focus on the solution so that there can be increased funds spent on research to get us to the end. A stitch in time saves nine. And if we can get this Alzheimer’s cured, one, two, three, four, five years earlier, can you imagine the kind of economic impact that would have on our society?

WHN: What do you see as the most important advice for caregivers?

MS: The most important is to understand the disease, to understand that the person’s brain is broken and that you cannot argue with Alzheimer’s. You just simply can’t. In addition to that, in order for me to be a better caregiver for my wife Elaine, I had to let go of my first Elaine. I had to understand that she no longer is going to be the wonderful, loving, support person she has been almost all of my life. And I have to understand that there now is a new person. And my role then as a caregiver is to as much as possible enter that new person’s life. By entering the life of a person with dementia, meaning understanding their surroundings and how they look at things, there is so much anxiety and confrontation that can be avoided because you understand. When a person with dementia asks the same question 35 times in a row, they’re not doing it to be funny. They’re not doing it to be irritable. They’re doing it because they don’t realize they ever asked that question before. So join their world. Understand the disease – knowing that you can’t argue with it and also that you’re dealing with a new person.

WHN: What resources are out there to support caregivers?

MS: Not enough. Any profits off my book are going to go to caregiver support groups. I said earlier that one of the tragedies of Alzheimer’s is not knowing the disease. We have got to have the medical profession understand that when there is a diagnosis of Alzheimer’s, there are two patients. I’ve heard stories where a doctor will seriously tell the spouse who does not have dementia, “Your wife has Alzheimer’s” and so forth. And they say, “What do I do about it?” And the doctor says, “Make the best of it.” That is just simply unacceptable. There is no medical professional who had better dare not understand and counsel the caregiver. And the Alzheimer’s Association now is trying to work with the medical profession so that there’s a consent form that the caregiver signs allowing the Alzheimer’s Association to contact them, to start giving them background information as to the kinds of issues and concerns involved as a caregiver…That could make such a big difference. They’re sort of like the gatekeepers. And once you go on from there, there are memory cafes that are sprouting out throughout Wisconsin. There’s also grief counseling and memory care counseling.

WHN: What’s next for you?

MS: My goal is to help caregivers cope, learn and survive. So I want to make sure I get this book into as many hands as possible. I’ve been doing my best to make it as reasonable and affordable as possible. But then I’ve got to convince legislators, particularly in Congress, that 2025 is not an acceptable goal from the standpoint of the toll that the disease takes. And then to also make the medical profession, employers, health insurance companies, financial advisors, attorneys – anyone who comes into contact with people who are dealing with dementia, anyone who does that has got to better understand the disease. So my goal is to get before, for example, employee assistance program, before financial advisors, just so there can be that awareness. And what pushes me forward is there is so much anxiety and grief and challenges that can be avoided if there’s a better understanding of how to handle this disease.