Ep 62: More Men Are Becoming Alzheimer’s Caregivers. Advice from Former Wisconsin Governor Schreiber, Author of My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver

Traditionally two-thirds of unpaid family caregivers have been women, but that is changing. Men now account for more than 40% of those caring for a spouse or aging parent with dementia. Former Wisconsin Governor Martin Schreiber talks with host Meryl Comer about his caregiving journey. Schreiber recounts his wife by his side during 16 years in public service, but his nearly two decade  journey as her caregiver provides insight that he shares in his book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver. Schreiber discusses how to handle the challenges faced by male caregivers when it comes to managing intimate tasks of daily living and shares personal anecdotes. When asked how he endured, he replied “I remember the good times.” You won’t want to miss this episode!

Produced by Susan Quirk and Amber Roniger

Transcript

Governor Schreiber (00:01):

The goal is to help the loved one live their best life possible. And in order to achieve that, we have to join their world. And we cannot try to bring back this person into our world because that's impossible. And so what we have to learn and understand is that if we join their world, what we do is to understand. If they don't know our name, that's okay. Hearts can touch without our loved one knowing our name.

Opening (00:29):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver, an Emmy Award-winning journalist, and the author of the New York Times bestseller, Slow Dancing With a Stranger.

Meryl Comer (00:47):

This is BrainStorm and I’m Meryl Comer. Historically, two thirds of unpaid family caregivers have been women, but men are increasingly stepping up to the front lines of care. Today, 41% of the 53 million Americans caring for a loved one are men in our popular and ongoing series, breaking Through the Silence of Alzheimer's. Our guest is former Wisconsin Governor Martin Schreiber, whose work on behalf of older citizens goes back decades to his 16 years in public service as a State Senator, Lieutenant Governor, and Governor in the state of Wisconsin. But it is his decade plus journey and the lesson shared in his book, My Two Elaine's: Learning, Coping, and Surviving as an Alzheimer's Caregiver that are our focus today. Welcome Governor Schreiber and thank you for joining us

Governor Schreiber (01:41):

Meryl. Thank you. And thank you for everything that you do to help so many live their best lives possible. Thank you for that.

Meryl Comer (01:48):

We agreed I could call you Marty, describe your wife Alay into our listeners in the best of times and your life together in public office.

Governor Schreiber (01:58):

I met Elaine when I was a freshman in high school, Latin class that goes back to 1953 and I knew right away that she was the one for me. And so we dated, we went steady, we got engaged and married and four children, 13 grandchildren, now eight great-grandchildren, but she was my friend, my advisor, my companion, my life partner. Everything that was a success in my life was because Elaine was there to help and to give guidance and to be there. One of her really great points, if I would run for an office and I would lose an election, I would lose, but she would never let me feel defeated. And it was that legacy that she passed on to me that we may have tough times, but we can never let ourselves feel defeated. If you would ask any of your listeners to think about the most wonderful person in the world, it may not be Elaine to them, but it would certainly be Elaine to me.

Meryl Comer (02:57):

Marty, you served in the Wisconsin State Senate from 1963 to 1971. You were the youngest senator in the state's history at age 23. So you married Elaine in 1961. She was a public school teacher. But my question to you is why so early in your political career did you focus on vulnerable populations from children to consumers and specifically to the elderly?

Governor Schreiber (03:24):

I grew up in a working class neighborhood and I saw the challenge of working people. My dad was on the city council at in the evening, he would go and visit people who had concerns about city services. And so I saw at a very early age some of the inner homes of people seeing my dad bring a type of public service to people because of his activities as an alderman on the city council. I think that was what really inspired me to want to go ahead and try and make a difference. And I wanted to make a difference in the lives of people who always couldn't speak and act and be strong and effective in and of their own being.

Meryl Comer (04:04):

You're quoted as saying if there's one thing worse than Alzheimer's, it's ignorance of the disease. Before your wife was stricken, do you recall what, what your own ignorance was about the disease?

Governor Schreiber (04:17):

Well, it always happened to somebody else. That's number one. It never would happen to me or to my wife before she was stricken. I just had no concept. I knew it was something that would take the mind away from a person, but above and beyond that I had no idea what one might do about this disease. I had no idea that you couldn't fight this disease head on. You know, I had really no idea that there are going to be challenges along the way and I had no idea that my wife would no longer be able to take care of herself in any possible kind of a way. So many of those things I didn't know. And when the diagnosis was made, the doctor said that there were four things that we should do. EDA and Aricept, well, I don't know if they work or not, but we did it.

Governor Schreiber (05:02):

He recommended and then socialization and then walking, and then also a glass of red wine every evening. Well, the fact of the matter is that that's all I knew. And just no concept, no understanding. And also because others in our relative relationships and friend relationship, because they were ignorant of the disease, they also didn't know how to act or what to do. And because of that, I think that the life, the travel, the journey of a caregiver becomes even that much more lonely and challenging because we at times feel deserted, abandoned by our friends, but not because they're mean or because they don't maybe love us, but they just simply don't know what to do because they don't understand the disease.

Meryl Comer (05:50):

Fast forward to today, what types of ignorance around the disease or stigma continue to offend you the most?

Governor Schreiber (06:00):

I think what offends me the most is the fact that there are some caregivers and members of family who do not understand that the goal is to help the loved one live their best life possible. And in order to achieve that, we have to join their world. And we cannot try to bring back this person into our world because that's impossible. And so what we have to learn and understand is that if we join their world, what we do is understand. If they don't know our name, that's okay. Hearts can touch without our loved one knowing our name. But by far the most upsetting thing to me is the argument that one caregiver or family member might get into with a person with Alzheimer's because the person with Alzheimer's made certain actions or words and was not really aware of their discussion. And then to see the caregiver say, you're wrong, didn't happen then it's not, wasn't Charlie, it was Joe, it wasn't this, it was that. And I see the worry, the fear, the concern on the face of the person who is ill. So confused, mixed up. You're

Meryl Comer (07:08):

Quoted as saying Alzheimer's disease creeps slowly into a person's life but never retreats. What do you feel are some of the unique challenges faced by men who less self-identify as caregivers?

Governor Schreiber (07:21):

I think the biggest problem we men have is we don't like to ask for directions. I think we're sometimes too proud and too arrogant for our own good. I think that we have to understand that to ask for help is a matter of courage. To ask for help means we're not giving up. And I think the sooner we can get that into the mind of the male caregiver, the better off the male caregiver is going to be and helping that caregiver live their best life possible, but also the best chance we have of helping the person who is Ill live their best life possible.

Meryl Comer (07:55):

There's some stats that I want to share with you. 49% of men feel that they had no choice in taking on this responsibility. 65% are employed while caregiving. What frustrations did they share with you?

Governor Schreiber (08:10):

First of all, I was very fortunate in that I had my own business and I could take care of my wife and still be financially independent. And so when I think about being a male caregiver, truly we don't choose it and we truly try to do our best and you can't beat this disease. So then we get to what you are trying to do to help people better understand this disease, to be better caregivers. It almost becomes more a matter of mind over matter, and we've got to get ourselves into the mental position of realizing that to take this disease head on is foolhardy, but to set a goal of helping our loved one live their best life possible, that's doable. That could be exciting, that could be rewarding, and that could be a matter of comfort.

Meryl Comer (09:01):

Most men aren't those in families where a loved one has the disease often help with finances, they arrange the care, but they do less of the hands-on task. Do men show a preference to manage the care rather than to administer it?

Governor Schreiber (09:18):

Yes. We're not the ones that changed the child's diapers. We're not the ones that gave the children the baths. We're not the ones that washed the clothes and so forth. Some of that is completely alien. And so to think about helping a loved one with taking a shower or to be doing other types of needed activities, I don't think men want to do that at all and feel extremely uncomfortable. And as far as the financial aspect, we can handle that because we're smart and so forth, but when it comes to the physical meeting, the direct health needs of our loved one, we don't know anything about it. We've never had that kind of experience and it's alien to us and we shirk it. It's one thing to see your loved one's mind disappear. It's another thing to think that you're going to have to help them. It never occurs to you.

Meryl Comer (10:04):

The most difficult duties like bathing, toileting, dressing are very intimate aspects of care. And as a mother, it's the last thing that I would want my son to do for me. So what advice do you offer men? They don't all have the love story or the relationship that you have with your wife that permits you to override the intimacy of the issues. What do you tell them?

Governor Schreiber (10:28):

I tell them that this disease is one of the toughest in the world. Being the caregiver is one of the toughest jobs in the world. We can't beat this disease. And so what we have to do is to understand our goal has to be to help our loved one live their best life possible. And if that can be our goal, it could be that giving someone a shower or toileting or so forth, it could be that that helps get us over the hump, so to speak, of just being able to do the job. I know it's not easy, but again, the whole concept of what the goal is, it's not giving someone a shower. The goal is to help our loved one live their best life possible. And I think that's what should be running through our head.

Meryl Comer (11:17):

Did your wife ever show any signs of agitation? And if so, how did you manage it?

Governor Schreiber (11:23):

Elaine got very angry with me and in the book I talk about how many times she would say how great I am, and then other times she would be so upset with me because I wouldn't let her drive or because I wouldn't let her go to the store alone. But Elaine would never be really angry by the grace of God, but she would be upset and upset that I was limiting her, her activities. Even at night when she would want to go out for a walk and it would be two o'clock in the morning, I still had to, so to speak, hold her back. That made her very upset. But I was very fortunate in that she never became physically upset, abusive. She was in assisted living memory care. This is maybe about eight years into her journey. Anyway, so we're having lunch and she started to cry and I said, well, Elaine, why are you crying?

Governor Schreiber (12:12):

Well, she said, I'm beginning to love you more than my husband. I didn't ask her, what's wrong with your Turkey husband? I didn't do that. But what that meant to me certainly was that this disease was progressing. But what it also meant to me was that it was not necessary for her to know my name in order for our hearts to touch. And I try and have other caregivers understand that it is not necessary for the person to know their name. That hearts can touch by the holding of hands, by the giving of a smile, by the singing of a song, by the giving of a hug. I know that it is devastating when our loved one doesn't remember our name. That's the disease. If we can join their world, we just accept it and we go on knowing that our hearts can continue to touch no matter who they might think we are.

Meryl Comer (13:02):

Deep down somewhere, you're always trying to reach a loved one and touch becomes probably one of the last things that you have to reach them with. Because I was very careful with my husband. I never spoke about him in front of him. I never spoke with a doctor about him in front of him or with a caregiver who was in my home. We always included him in the conversation. How did you manage the dialogue around Elaine?

Governor Schreiber (13:34):

In much the same way that you described, and I think rather than rules of who we talk in front of or don't talk in front of, but the mindset is to help our loved one live their best life possible. So to understand the courage that they're showing as they try and live through this journey, the courage that they're showing when they realize that they're losing their memory and so forth to talk in front of someone in that type of setting, just leaves to and deepens the angst, the worry, the frustration, the despair, all of the things that we want to try and have our loved one avoid. And I mean, you hit the nail on the head by making sure that there is that kind of communication or even lack of communication as it relates to when our loved one might be involved in a conversation.

Meryl Comer (14:21):

You know, you made the point. Self-Care is non-negotiable. Now, if that's your mantra, it's easier said than done. How did you manage your own care? Because the caregiver is the second patient.

Governor Schreiber (14:34):

That is correct. And I didn't in the beginning manage my own care. I ended up with a bunch of serious medical implications. Why would this man ordinarily of good health have all of these complications? Well, unfortunately, I, Marty and the doctors and the medical profession didn't really look at what was going on in my life deeply. What was going on in my life is that trying to deal with this challenge of seeing my wife disappear mentally, even the unacknowledged grieving that they expressed place, the depression, all of those begin to mount as I set it forth in the book. Being a caregiver is really a lifeline to our loved one who is ill. And if we're the lifeline and we gnaw at us being the lifeline by not getting enough sleep, by not getting a proper diet, by not having enough respite, by not getting enough exercise, by not enough socialization, all of those things, they continue to gnaw away. And finally it gets to the breaking point where the caregiver can become irrationally irritable. I found my comfort after a while in beef feeder's, gin, and finally my children had a sit-down session with me and they say, dad, if you don't take care of yourself, you're going to be dead before mom and we don't want to lose both of our parents. So caregivers, you’ve got to take care of yourself.

Meryl Comer (15:55):

Marni. One of the reasons I became an advocate is because no matter what I did every day for my husband and my mother, I knew the disease was going to win. So I had to fight it outside. And I'm sure you can appreciate it, which is why you wrote the book and that you've worked so hard outside. You have to do something based on the knowledge you have and use it to help other families because you don't want families going through what you learned, what we both learned the hard way. Would you agree?

Governor Schreiber (16:30):

Absolutely. And that's why I say if there's one thing worse than Alzheimer's, it's ignorance of the disease. The really tough part, Meryl is letting go of that person who wants was

Meryl Comer (16:40):

Honey. Let me ask you a very personal question. When you think about Elaine, do you think about the personal care that you gave her that probably wasn't as pleasant as you might like? Or do you think about the good times?

Governor Schreiber (16:55):

I think about the good times, and I hope other people can too, because I knew I was giving her something special in her life and that was a good feeling. I try and stay away from the misery.

Meryl Comer (17:05):

Both you and I have testified before the FDA as advocates. Why based on your experience in government, is it important to hear the perspective of both the patient and the caregiver?

Governor Schreiber (17:18):

Well, it's important because simply policy decision makers don't understand. And if there's one thing worse than Alzheimer's, it's ignorance of the disease. And I don't think that decision makers really understand the impact on the life of a caregiver. I don't think they also really don't understand how much service, if you relate it to dollars and to the now, the billions, how much service the caregivers perform. So desperately important for any caregivers to make sure that that policymaker understands the kind of challenge to a caregiver and the kind of benefit the caregiver provides.

Meryl Comer (17:56):

Let's use your position in public service and go to the issue of currently it's important to get to early diagnosis and you have younger people who are still in the workplace being diagnosed with MCI, how do you protect them from discrimination when they still feel they have something to give?

Governor Schreiber (18:20):

I batted around in my mind because I have seen people who have been dismissed from their employment because of that. I can see the worthwhileness of people with early onset of still being able to make a contribution, but also I can feel and sense what it's like to be turned out the pasture because your mind is not going to work as it should.

Meryl Comer (18:41):

Marty, thank you so much for joining us. I think the image that is lasting to me from your book is memory fading, love Enduring, I think that sort of epitomizes your life. Together with Elaine, our guest, former governor of Wisconsin, Martin Schreiber, his book, my two Elaine's, learning, coping, and Surviving as an Alzheimer's caregiver. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us. Our team is on a mission to help you stay up with the latest scientific breakthroughs from new therapies to technologies on early diagnosis and personal brain health advice from well-known experts using an equity lens that promotes brain health for all. Now we'd like to hear what's on your mind, what are the topics and guests you'd like to hear featured on brainstorm? Send your comments to BrainStorm@usagainstalzheimers.org. 

Speaker 2 (19:43):

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