Governor Martin Schreiber and Caring For His Wife Elaine Through Alzheimer's

As caregivers we have so many things that hit us all the time and we can't always nail these things down by ourselves. Who helps you what does that look like I'm Peter Rosenberg and I wanted to you about a program but a part of. Now for almost 10 years. That's legal shield for less than $30 a month. I have access to a full law firm they can handle all kinds of things. If I get a contract put in front of me if I get of dispute was something doesn't matter, I've got full law firm that can help me navigate through all the sticky wicket is that we as caregivers have to deal with power of attorney medical power of attorney will every bit of it as a caregiver. We need someone who advocates for us and that's why I use legal shield to go to caregiver legal.com look on the left-hand side versus legal shield to selected turns purple this pick a plan to give you some options if you don't need to do those no selected checkout and be protected. Starting today that caregiver legal.com October the caregiver dispute Roseburg. This is the program for you as a family caregiver for so glad that you are with this hopefully caregiver.com hope for the cure.com I'm joined today by Jim and I got to meet a couple years ago and thrilled to have him back his former governor of Wisconsin. I think I said that right. By the way, Wisconsin. The advice of the accident come through Wisconsin and this is Martin Friberg Gov. Martin Shriver in his book is called my two lanes in it details his journey caring for his wife Elaine through Alzheimer's for 18 years.

She recently passed away and Marty here to just share his thoughts, his insights this book a wonderful book that I would highly recommend getting read through it it it it it moved me very deeply from just one caregiving husband to another Phelps such a connection and I am just I couldn't.

I can't sing this price.

The price of this event because he's very honest about this journey from somebody who put some time and it's a Marty welcome back to the program and were so glad that you're with. Thank you, where what is right for me throughout the with you once again and and you know what is so wonderful about this that you heard me talk once but you invited me back as I can find that you have an open invitation.

I am grateful I join all of your list is yours and being grateful what you're doing. They help give people some hope and help give people some opportunity to better cope with some with with this whole business of caregiving so your your outstanding and what you're doing. So thank you. Well that's that's very gracious.

I I know you you lost Elaine this year but as you said before we came on the show here you have lost her for many years and in this been a journey. Can you come to give us a little bit of a backdrop for those who don't know you and then let's talk about, where you are right now in your thoughts. Since all the background I remain wise that girl I met when I was a freshman in Latin class in high school I was 14 years old and I knew right away I was love at first sight, and so we dated and we went steady and we got engaged and we got married and four children, 13 grandchildren now seven great-grandchildren, but she was everything that you could ever want in a spouse and wife, caring and loving and understanding and patient beginning when I would run for office should be the hardest working campaigner if I would lose you and never let me feel defeated and that just a great guy. So now she's about 64 years of age and now she's getting lost. Driving to and from places had been driving to and from or 10 years.

She was a great cook and that sometimes she would mess up correct recipe so badly that she would cry and that sometimes she would tell people what we did and we never did it. And so that was then the beginning of what I call the second Elaine and Zoe.

We we've been on this journey.

Now for the 18 years and I think one thing that I learned more than anything else and that is Alzheimer's that bad ignorance of the disease is worse.

And when I say ignorance of the disease.

I healthcare professionals who many times do not understand that when there is a diagnosis of Alzheimer's. There are two patients, a person who is ill and then also the caregiver. And so, but also in units of the disease by the caregiver. All my guys Peter I will you know there's an old German saying that you get also quickens parcel eight but I and and so I I I learned these things, sometimes too late and I felt I just had to do something to help other caregivers learn article so we can survive. And – so then I did everything I could trying to take care of me all my children finally had it like an intervention with me and said that if you don't get some help in and get help from her mom were going to lose you to and why we want to lose to parents well, but when I began to understand and and and and more is more strongly and that is that what I was trying to what when I was doubtlessly doing was Peter. I was fighting this disease cannot okay and I would not let it whip me and it began to dawn on me that my fight with this disease was more important than Elaine living her best life and finally I had to realize that there is a better and a different way to fight this disease and trying to take it and on and down and so the placement of Elaine into assisted living.

Some eight years ago was one of the very toughest decisions I've ever made, and in my whole life, but probably was one of the best for her tonight and I asked you a question about that when you left her that night that you went back home after you placed her assisted living. What was that drive home for you. We alone did you have somebody you know of what was that like for you where I can find what I was alone and then was it was horrible and when it was just absolutely horrible. And what what what we have to fight we caregivers we have to fight the emotional versus the intellectual intellectually. That was the best thing for Elaine, intellectually, that was the best thing for me emotionally to who to leave your loved one ends and know that that's general the end of this life together in your own home and and so forth. That was so so difficult but you know and the reason I asked that is, you know. Looking back on it, would you if so would you say to someone now go into that same process that being alone was it was important for you to be able to grieve that out by yourself would you suggest it would be better to have somebody with you.

I have learned in talking with Elaine's sisters and brother and also with my own children. Everyone handles grief a different way and that I think I was glad that I was alone because I shed tears cry like a baby almost an and I had to. And I think that's another thing for we caregivers do understand we got him that our emotions out and you know I'm a grown man. I should be crying 60 in what was an unknown early 70s that I should be crying absolutely not what I began to realize that God and that these emotions out so I can that can be help of Huey and and tears are sometimes that looked upon as being a type of skimming, but I was alone and I'm glad I was not there again on you every everyone handles this a different way and I think they should think about what kind of comfort that the get one way or another, will, and it that I think that's the kind of thing I want listeners to hear from you because you're still wrong way through just there's just the way you go to do it that the process this out. The only baby wrong way would be to ignore it altogether. I think that would be the unhealthy way, but I think what I'm hoping to point fellow caregivers to is fine that way that helps healthfully process that grief out for you for me when I am overwhelmed by grief. A lot of times I just go to the panel and I like to be by myself and I just work that out at the keyboard and sometimes I get on a horse know which leaders will Rogers is that there is nothing wrong with the inside of a man at the outset of a horse can't fix right and I'm a big fan of that statement, but it's so you know I think that's one of the issues I struggle with for myself personally. I know my fellow caregivers to okay how we grief how we do this and as you stated we talked about before coming on the program. She passed away in April, but you've been grieving for almost 2 decades talk about the what what we caregivers stay particularly with the mention so forth Alzheimer's.

What we see as our loved one dying of each state and we know something is not going right. We try and do our best take care of that deficits that are left because I loved ones mind is is is is getting smaller. We we trying and and deal with that and so we work harder and spend more time don't go to the gym. What we maybe do is that we we skip going out with friends because we want to help our loved one is as much as possible and out here. I had a good friend who retired and that and he was enjoying retirement.

He ate dinner one night after dinner, he laid on the on on the college, watch television, and he died of a massive heart attack and it was a terrible tragedy of certainly there was a funeral and people came by to express her sympathy and acknowledge the loss a caregiver, because your loved one is still with you, even though they are leaving you in mind, but a caregiver never has that closure that one would get when one passes away, and because there is never that closure. I think that that caregivers we caregivers do not really fully understand the fact that were grieving along with the depression and the worry and anxiety that we feel we we don't realize that were grieving and so what I think is important for caregivers to understand is we are in the process of meeting and and I think the more that we can understand that in a brief and the cheers are. I really had our complement of the love and if if it is possible to acknowledge that grief while it's in process.

I think that can make make things easier now on when we are talking before the show them interrelate past when April 25 and how do I feel, to a degree. I feel relieved. I feel relieved for me, but I also feel relieved for Elaine because her life was so very good baseball and I was so worried that she would maybe get cold and have a very difficult time in the in the process of dying by the grace of God it was that it was passing in her sleep so so that in and of itself was was a blessing, but that this this process of reading it again if Alzheimer's will. He would hang onto that thought we got to go to quick break your farm up against the heartbreak okay that I did and I don't want to interrupt that but I want to give it give it the fullness. I'll let you have the whole segment of the next one. Talking with former governor of Wisconsin, Marty Schreiber, his book is by two Elaine's and he brings a wealth of insight, comfort, wisdom, talk more with him in the next segment is Peter Rosenberg.

This is hope for the caregiver will be right back.

As caregivers we have so many things that hit us all the time and we can't always nail these things down by ourselves. Who helps you what does that look like I'm Peter Rosenberg and I wanted to you about a program evident part of now for almost 10 years. That's legal shield for less than $30 a month. I have access to a full law firm they can handle all kinds of things.

If I get a contract put in front of me if I get of dispute was something doesn't matter, I've got full law firm that can help me navigate through all the sticky wickets that we as caregivers have to deal with power of attorney medical power of attorney will every bit of it as a caregiver.

We need someone who advocates for us and that's why I use legal shield to go to caregiver legal.com look on the left-hand side versus legal shield to selected turns purple this pick a plan to give you some options if you don't need to do those though selected checkout and be protected.

Starting today that caregiver legal.com seeing caregiver.com dispute arose. But if this is program for family caregiver healthy caregiver sling letter. And we're glad that you're here pushing against the isolation, the cripple so many of us as caregivers today are very special guest for continue my interview here with the governor was cousin Marty Schreiber. This book is my two Elaine's details his journey caring for his wife, Elaine Alzheimer's care for her for 18 years. She recently passed away and Marty is here to bring us some context, wisdom, insights and other issues that we as caregivers can glean from people like Marty blaze a trail for the rest of us and I'm extremely grateful to have him here have enjoyed our conversations in the past and I want to continue on this Marty were talking the last segment about grief and mourning want to think that I've talked about this. A lot of the program that there's a Scripture says bless Jesus of Blessed are those who mourn for they shall be comforted. But we can't mourn if were reaching out and despairing. I think part of morning is that acceptance of what is in the comfort comes once we cross that threshold of accepting what is, is that something that resonates with you through your journey one. One of the things that I learned as it as it relates to the journey in Nana's as long as I tried to keep Elaine in my world. No Elaine didn't happen on a Wednesday. It happened on the Thursday and knowing it was Jones that was the Smithson knowing then you don't need another jacket, no Elaine, you don't need another blanket and so forth and so what what I was doing was trying to keep her in my life making her life miserable with anxiety and uncertainty in very in my life filled with the same kinds of things so what I learned was that I had to begin to let go of this person once was, so I could embrace and live in all the person now is that back process of transitioning from what Elaine was lot, Elaine now is that was very important transition and on for four or we caregivers it doesn't happen with the snap of a finger. It happened with the little bit of peers and worry and anxiety a little bit all the time and finance are not. Once world gets smaller. Finally, we get to the point where we get to the point of acceptance acceptance that this is a person that this is no longer the person once was and what what what is important in and that is it on a few factors. One is I have seen caregivers and siblings.

Family members become so distraught when their level and could not remember their name or the relationship.

Well, the plane of the matter is that yes that person once could do that but there mind is broken and we cannot accept the rejection. We cannot accept the what we think is hurt when I left one doesn't remember names of their again is transitioning its its beginning to gain an acceptance of of what the current situation is and if if we can do that I think is going to go such a long way in using the anxiety and worry so what what would happen is an when he later was diagnosed Peter she kept her like a journal or diary and I never I never understood until I read that how much she depended upon the but never did I get an insight into her worries, you know what's gonna happen to me and my children tell me it's when it's time for nursing home at a and so with within that framework, she had so many worries you add onto the worries of someone who knows that there mind is disappearing you. You have that situation and then be corrected for everything know it didn't happen when it happened on the Thursday I told you once before. Why don't you remember what you doing way that I can send so that adds so much more misery into someone who is already dealing with some supreme challenges of we caregivers have to understand the importance of the transitioning of of beginning to let ourselves go easy for me to say extremely difficult to do, but I think so important Peter for caregivers to understand that so they can live a better life will like. I see that in and I I've struggled with that of my the way I've come to understand it with me and when I explained Philip caregivers with my wife.

For example, her legs are going you don't argue with AP Tatian you not aware that argument. It's done, it's gone. It's this and we could see that when you have a physical disability like that it's you wrap your mind around it that I do of a man who was deaf and he said one of things that it was so hard about being deaf versus anything else is that he didn't look disabled. You know what you're blind you look disabled sometimes wear dark glasses. Whatever when you're disabled physically with your mobility like Gracie is with her legs, you can see that but with deafness you can't instantly people would just yell at them to become angry because he couldn't hear and and that's what happened. So much when people's minds are broken that were were yelling at the disease as if we could somehow go 12 rounds with Alzheimer's and what are the things I love about your book is that you show that no, you're not going to go if you never fight this defeat is it that this disease is bigger than us and you you you clearly show your journey of coming to that acceptance.

It's a beautiful path, but if it came at great cost to you that we did. It's clear Marty with just the conversations you would've had it in your book, this, this did not come easy when you work through that acceptance were you doing this again by yourself.

Did you have people that were given along the way or would you foraging or did you have people with intentionality coming to give you some guidance or how that work for you. What I learned was nobody now it's with one thing for me to read by myself. I stated before anything went into the assisted living but in this journey, no caregiver should think that they and do it alone.

Absolutely not. If it wouldn't have been for counseling with the Alzheimer's Association. I went to counseling in an and that helped me immensely to be able to share with other people know what your life is like to have other people acknowledge what it's like to be a caregiver, that they understand to get help. I Alzheimer's is bad ignorance of the disease is worth one of the ignorant things about my journey was I realized maybe. Well, hopefully in the right time that I couldn't do it alone.

And so I then did go into counseling and I did see a mentor who also was an experience. This and and it is so important to get that kindness see I call Alzheimer's, not a chicken castle disease if if I have heart operation. I come home and I can't get around people will bring me a chicken castle that I have, hypothetically, I have a hip surgery and I can't walk the bring me a chicken castle with Alzheimer's because people don't understand this disease ran many many years and and relatives in an even church members and so forth papers to shy away because they don't know how to handle and so now the caregiver we caregivers are going through this really tough time trying to adjust to our loved one having their mind they need a way and in addition that now we feel that working deserted. If you haven't been deserted because people are staying away because they simply don't know. You want to be mean and I want to be hurtful, but they just don't know what to do so. Here again, professional help, talking with someone the Alzheimer's has a 24 seven outline that people can, but it is just so critical in my mind, you reinforce the fact you cannot, you must not do it alone. Here's what I found out in this process. I found out that all of the armies marching in all that. Maybe sailing in all of the beer that's brewed in all the alcohol that is distilled is not going to stop this disease but is support and comfort of friends and its technology. What were going through and and and dealing with our emotions with the kind of help that is going to make a difference is not only a matter of surviving as a caregiver, but hopefully even thriving and were not going to get to that point by going solo by going alone.

Will said I lead a I started and lead a caregiver support group out here in our community in Montana and never had anything like this in Nashville when I lived there for 35 years and and I thought you know what we need to have some of this. I didn't know quite what it would look like. I just did it the first couple of his every Thursday in the first couple Thursday. I was by myself. This is still above us up and eventually people started trickling in. There were having more more people from the community showing up and I got a couple of gentlemen in the group mail whose wives or dealing with his in they've expressed almost verbatim what you just sit you know that that that they were trying to do this alone, and it was crushing them and they realize now that they can't they have to have some kind of community that 11 Jim in particular somebody you know his church just late.

They just almost ignore it and he said is very hurtful and I don't understand it and I think a lot of people don't know what to say. One of the reasons I do this program is I want to give people the vocabulary of what to say of how to build and sometimes you don't need to say anything sometimes just need to show up, you know, just be there and and Ed and I are really appreciate what you just said there because people of faith, particularly we we have a mandate to minister to the sick, the broken hearted to wounded and and yet we don't sometimes out of our own discomfort and I think it's I love your words to help push through that got just about 30 seconds before go to another break and want to continue on this end of what are your thoughts transitioning as you're getting ready to take this new place in your life where you this burden has been lifted from you and wanted you to think about that before we go into the next segment and the fact that the couple had to do that now, just go ahead Gordon Nixon because I want you to want to set that up with you as you now have trait you transitioning again in your life is a life you share your thoughts are things that are dispute arose where this is hopefully caregiver talking with Marty Shriver from government Wisconsin. It is book is my two delays will be right up your Rosenberger many years ago when my wife Grace became a AA PT. She sold the importance of quality prosthetics. He saw the importance of the support team and people that could help her regain her life after losing both legs.

She had this vision of creating an organization that would help others do the very same thing while pulling them to Christ and for more than 17 years we been doing just that we purchase supplies. We send equipment and we train recent teams over to West Africa. We could working with the country of Ghana. Several clinics over there now and each week more people walk because of Gracie's vision 2011.

We watched the new program outreach to family caregivers. Drawing on my mail 36+ years as Gracie's caregiver through a medical nightmare for insights have learned all of it the hard way to fellow caregivers to help them stay strong and healthy will take care of someone is not you would be a part of this go out to stand without.com/giving stayed with the calm/giving. Help us do more steady without reaching the wound and those careful steady without.com/giving. We know caregiver is calm that is my wife Gracie from receiving you can see more about her.com.

Also check out our Facebook group is a private group that started just for caregivers is the hopefully caregiver group and you can see that amort hopefully caregiver.cobbler continue our conversation with Marty Shriver, his former governor of Wisconsin is book is my two elites is available wherever books are sold, and I would highly recommend you get a copy of this book edited by Mr. copy to give to a friend this going through this to give it to your pastor give it to anyone you know that is touching this world. He brings the amazing insight is you for been hearing from our conversation together Marty before the break we were talking about. Okay you done this now for 18 years and you have you've logged in some hard days as a caregiver. Alzheimer's is one of the things that it takes so much off was like that of the character years off the life of caregiver times and you've done this and now Elaine has gone and you are catching your breath from this.

What's next what what's what's the next transition for you first thought. I want you to know how much I admire and am grateful for what you do because your helping give insight to caregivers to give them that hope and that strength is is is incalculable as to as to the importance and value with happy.

I know we cannot fight this Alzheimer's disease add-on and I know that if we try and do it.

It's a disaster for not only the caregiver but also for the person that is still thinking how can we develop the ability to learn to cope and survive, and I concluded by saying forget about fighting the disease can find is our goal now our fight is to help our loved one, and ourselves that our best five now that opens up something brand-new because when when a man and I were dating. How are we going to live our best as possible when we are getting our first my first thought was how can we best price possible. Looking at home. The best always searching for the best life possible. And just because Alzheimer's comes along that does not mean that we stop looking for how we live our best life possible and I think if it is possible for we caregivers to begin focusing on that, it's going to assuage is going to take away a lot of that guilt a lot of anxiety because now we have a new mission that you can look at all times as being the world's most dreaded disease. Okay, well, let's do that, but then also, what, let's look at what is the greatest opportunity. Well, the greatest opportunity for us is just a we are going to try and now focus on the best life possible. So what will I be doing. I think I want to work with caregivers and I want to work with doctors and nurses and and and physical therapists and lawyers sent and and I was still first came in recent resource departments to help them understand this disease a little bit better help them understand that challenges in a caregiver and and and even to work to have more dementia friendly churches and parishes and synagogues in human relations departments and so forth and so forth and so I think that that's what I want to do when and down it. It's become a mission is to become a passionate it's become something I want to do and down next and exciting kind of prospect for me and exciting kind of prospect, you know, you spent a career in public service and you reach the pinnacle in your state's governor and now you're entering in a level of public service that escapes most people and that you were taking your own pain your own wounds your own heart ache and your channeling this into a way to lift others up and reach into their their heart ache with a with a clear message of hope and a path you've done this of this book you're doing this to this conversation you what I have in your notice to your life and it really is quite moving party to watch this and see to see your passion, our energy on this and I am grateful to be part of what you're doing. I got about a minute or two and I like you, just to offer one last insight to listers white male who are just at the beginning of this journey you take about a minute to do that (I think one of the most important is to learn about this disease again if Alzheimer's is better ignorance of the disease is worse and then the next is to join the world of the first now is, and that no way you're going to change it except that and even rejoice in it to the best of your ability and then also by doing that you are going to enable yourself to have more moments of joy with your loved one. And if we don't understand this disease.

If we don't join the world of the personal knowledge were going to miss out on moments of joy and how tragic would that be in addition to the challenge of facing this disease will said Marty Shriver in the book is called my to Elaine's, you can get it wherever books are sold and I again I would highly recommend you doing this you know we have a mandate is for our Savior to the sick naked hungry prison thirsty and is pretty pretty pretty serious about it and these missions of mercy, of extending mercy that we are. We see throughout all of Scripture, and Marty has model model. This beautiful, excuse me and and I think this is our calling into two, and it is Marty so often also modeled for us showing mercy to yourself, showing mercy to yourself that this journey it is painful enough without you pushed putting unreasonable expectations on you to fight something that is way beyond her papers. We are not able to do it. I will close with the song that I've never played on the program before and this is this is a piece that I wrote for caregivers and a friend of mine in Nashville help me finish it up and it's called I can only hold you now and I asked a plate this on the keyboard and asked Gracie to sing it with me and she she agreed to do so in limine that gorgeous voice of hers and she so precious when she did it – want to do a good job of this. He knew how important this almost every somewhat in with this and Marty want to thank you again for the privilege of just sitting down and talk with you III cherish these times and you're always welcome.

Okay, my pleasure.

Thank you so very much governor you are most welcome. This song I think you can find very meaningful Scott. I can only hold you now this Peter Rosenberger this is hope for the caregiver.

Hopefully caregiver.com will see you next year's grace I pay the latest Peter Rosenberger did you know that you can recycle used prosthetic limbs know.

Can we been doing this at steady with hope since 2005 for six years I did it myself out of our garage and sometimes on colder nights of sit by the fire, nor did I be surrounded by a bunch of prosthetic legs that have come from all of the country that would disassemble them and store the feet the pylons the needs the adapters the screws all those things. It can be re-salvaged and repurposed to build a custom fit leg a wonderful organization in Nashville partnered with us to help take it out of my garage in my den and into a better system. This is core civic core civic.com that they are the nation's largest owner of partnership correctional detention and residential reentry facilities and they have a lot of faith-based programs and I'm proud to say that standing with hope is one of those programs and has been there for over a decade inmates volunteer to help us disassemble those used prosthetic limbs. Reports show the inmates who go through faith-based programs are better equipped to go back into society and the recidivism rate of return back to prison is so low they don't want to come back in society doesn't want to come back and faith-based programs are a big part of that and that's something that core civic really believes in, and we are so thrilled that standing with hope is one of those programs for the first time started inmate looked at me said I'm never done anything positive with my hands until I started doing this program stating without another inmate told me he said I never thought of people with disabilities until I started doing this and this is an extraordinary partnership and very moving to see this see we can do so much with these materials but a lot of family members have a love on the passes away. They don't know what to do with the Linda keep it in the closet or sometimes even worse than throw it away. Please don't let that happen. Please send it to us through stating with hope stated with hope.com/recycle steady with hope.com/recycle and let's give the gift that keeps on walking