Paula: Welcome to TesseTalks with your host, Tesse Akpeki, and co-host me Paula Okonneh where we share with you top leadership and management strategies. This is and continues to be a journey of discovery where we learn that leadership is personal and professional. And we hope you, our listeners, will walk with us in this adventure. Today I have the greatest pleasure of welcoming back the brilliant Carol Weisman, who has been a guest several times with us on TesseTalks. But before she joins us, let me tell you a bit about her. Carol founded Board Builders, an international consultant firm for custom fundraising, philanthropy, and governance in 1994. She’s the author of 11 books, not one, 11 books. And in 2020 her husband Frank, was diagnosed with Lewy Body dementia, Parkinson’s Disease, and spinal stenosis. Carol put a pause on her consultant and speaking to care for her lovely husband Frank, who passed away in January of 2025. She’s now returning to international work, grateful for the time she spent with Frank and looking forward to connecting with the world once again. So our theme today is Your Life Caring for Frank. And with that I welcome Carol Weisman to TesseTalks.
Carol: Good to be there.
Tesse: Hi Carol.
Carol: Hi Tesse.
Tesse: It’s lovely to see you again. And I’m so looking forward to seeing you in London, it’s been too long. And you came on the show, I think it was about two years ago, and you shared some of your journey with Frank and caring for Frank. How was the experience for both of you, with him being diagnosed and up till January, 2025? What was your journey like?
Carol: It was really rough. I’m not going to say it was any prettier than it was, but it was an honor to take care of him. He was a great husband, and I don’t know honestly how anybody takes care of someone who has not been great to them in the past. And I have friends who have had to take care of husbands that were abusive or parents that were neglectful. That’s really rough. This is a whole lot easier, but it doesn’t make it easy. So, it was quite a journey. It started in 2020 when he woke up one morning and had no idea who I was. And I knew something was seriously wrong and I called his doctor and he said, take him to the emergency room. And so I did, and I’m sure it’s the same way in London. You start with a medical student and then you go to the next one and the next one you go through seven doctors before you get to the guy in charge or the woman in charge.
And so they would always ask him the same set of questions. And one of the questions was always, do you know where you are? And he would say, Charles F. Knight. And they would say, no, you’re in the Barnes ER. Well, in fact, the Barnes Emergency Room is in the Charles F. Knight building. And so he was getting it right. And I had to keep saying, this is the Charles F. Knight Building, which was a fairly new building and they weren’t referring it to it the way that it had been referred to by other people before had been completed. So about the fourth doctor said, no, this is the Barnes ER. And I said, it’s the Barnes ER in the Charles F. Knight Building. And he said, ma’am, I’ve been working here three years. And I said, okay sweetie, let’s go outside. And I showed him this sign that’s four feet tall that says the Charles F. Knight Building.

So that was how this all started, our really horrific journey. He was diagnosed within 24 hours. And that was really when the mourning process began. Because unlike cancer, a cancer diagnosis is like being on a rollercoaster. Some people do well, some people are cured, some people go into remission, and some people die. But there is hope and there’s a lot of hope with cancer, with Lewy Bodies dementia. There’s no treatment, no cure, no hope. So you really begin saying goodbye at that point. It’s the beginning of the mourning process because every day is another loss.
Tesse: Wow. Every day is another loss.
Carol: Yes.
Tesse: Paula, as you listen to Carol and what are your thoughts?
Paula: I’m thinking how tough that may have not may have been. That is very tough when you get a diagnosis like that and you know there’s no cure.
Carol: The other piece of it, Paula, is that you don’t have a timeline. They say 2 to 10 years. One of my friends recently passed with pancreatic cancer and she had stage four and they said eight to 12 months. But to have such a long timeline, who knows? So, that’s really frustrating as well in terms of whether you close your business or whether you keep working or how do you manage that? Now I’m 76 and this was my husband of 48 years. But if you are, let’s say in your forties, and this is a parent and you’re also dealing with children, that’s a whole different thing then you’re really the bologna in the sandwich. And the decision making can be quite a bit harder when you have to make money to support yourself, take care of a parent, and also take care of your children. So, I think that’s much more difficult. I think the most difficult is when you’re caring for someone who hasn’t cared for you. And I was extremely fortunate in that by some fluke of luck or God or whatever, I married a really terrific guy and we were very happy. We were married for 48 years. But I have friends who have had to care for spouses that were abusive or neglectful or for parents who were abusive or neglectful. And I think that must be about as hard as it gets. This was frustrating enough without caring for someone who had given you unconditional love for that many years.
Paula: I agree with you 100%. Because off camera, I think you had said, oh, Tesse and I had mentioned how we are sorry for your loss. And you were like, it’s not really a loss.
Carol: It wasn’t a loss. When he finally died in January, I was so relieved. And I think he was relieved as well because although he was not oriented to where he was. But it was really, we were both finally free. He was free of pain and confusion. He was at the point because of his spinal stenosis and his Parkinson’s disease, he was getting bed sores. It just was a horrible situation to have someone you loved that also be in pain.
Paula: Yes, yes. I understand a bit about the relief because my mom had dementia and it was to see the personality, the person you knew physically okay in some sense, as you say, it’s not cancer, but at the same time you’re losing them. And it’s like every day you’re losing them more and more of them. And they’re still here. It’s painful.
Carol: Yes. Well, and Frank had Parkinson’s and spinal stenosis in addition. So, he did have a lot of physical pain as well, but I learned a lot, a lot about myself, a lot about Frank. There were some funny things that happened. I think my favorite thing that happened, he was always a gentleman and Tesse knew him well, and he was always very polite. And so his doctor said probably the best way to bathe him is just, he could still stand up at that point, it was about two years ago, to help him in the shower. And so I just took a shower with him. And so we were about to get in the shower, and he said, oh, I’m sorry, I’m Frank Robbins. And I thought, what? And he said, what should I call you? And I said, well, you can call me Carol, or you can call me sweetie, or you can call me baby cakes. And he said, I used to call my wife baby cakes. And so he had no idea who this naked woman was, but he was very polite. What are you thinking, Frank? You know, whatever. So, I helped him in shower and got him all cleaned up. But the other thing that happened about, oh, I guess it was about a year and a half into this nightmare, he said, I’m quite fond of you. Again, he didn’t know I was his wife, but he said, would you consider marrying me? And so I said, I would love to marry you. What an honor. And so we live in a tall building and one of my friends lived upstairs and I said, what are you doing this afternoon? And he said, I’m free. And I said, could you marry Frank and me? And so we’ve both been married twice. My friend downloaded a marriage certificate and we got married right before the condo association board meeting downstairs. So, it’s not all horror stories. But the good times were few and far between.
Paula: Oh boy. Because I wanted to ask you whether there were any highs and lows. I think you’ve answered that. I mean, that’s a really good memory that you have. When you think about that you chuckle, don’t you?
Carol: Yes. But there was one real low, two real lows. One on my half and one on his behalf. I had been married for a very long time, and my whole marriage, I had never screamed at Frank. I’d never yelled. And because of his Parkinson’s, he couldn’t feed himself. And he was on a high calorie diet because he was losing weight and I was gaining weight because I was eating at night. And so I’d have to make two separate dinners. So, I would feed him first and cut up his food and feed him, and then I would go and make something for myself and come back and sit down. And one day I totally lost my cool. And I was just having the worst day. And I sat down and he wanted me to move the food and do this and get him something else and get him some more ice cubes for his water and I just blew a gasket. And I just started screaming, I deserve to have a hot meal. And I just completely lost it. I’d never screamed at him. I’d never lost my temper with him in all those years. And boy did I lose my temper. And I felt awful later, but I just felt so oppressed by this whole thing. I’ve been in the condo for three days straight without a break and just went nuts. So, that was my low point.

His low point was he was having a lot of back pain from his spinal stenosis, and he couldn’t get comfortable in his lift chair. So I said, why don’t we lay you down in bed, maybe you’ll be more comfortable. And so I put him in the bed and I put up the rails. He was in a hospital bed by then, and he started screaming that I was holding him captive. He was screaming at the top of his lungs for 30 minutes for the police. I want the police, she’s holding me captive. Help, help, help. And I live in an old building, not old by British standards. It’s over a hundred years old.

Tesse: Okay. That’s old.

Carol: So, it’s old for the United States. It’s not an old castle or anything that’s 500 years old. We don’t have any moats, but I like that. So, I couldn’t get them to calm down. And I was afraid of bringing down the rails because I thought he’d fall and hurt himself. Or he’d lunge at me and I would be hurt. So I was really worried. And I finally got my sister on the phone and my sister’s a nurse practitioner, and she talked him down and calmed him down and said, she’s not going to hurt you. She’s there to take care of you. You’re going to be okay. And then once he calmed down, he fell asleep. And Jonnie said to me, what are your neighbors going to think? And I said, I have to tell you about my neighbors. If I hadn’t have been able to get you on the phone, I was going straight next door to get my neighbor to help me. And that was one of the things that was so precious to me, was how helpful and wonderful the people in my building were. Mike called me, the guy who lives next door and in my condo building, and said, when Frank was diagnosed, and he said, Carol, if you have a problem, just call me and there are three Mikes on my floor. I think one Frank and three Mikes. And one guy named Christian, there are five of us on the floor.

And so he said, I’ll get Mike Haring or Mike Murphy and we’ll get Frank up. And I said, you are the kindest man in the world, but all three of you have had heart attacks, so I don’t need a pile of you guys. So, we live in a building that has valet parking. And so I said, I’ll call one of the valets, but I knew he would come and help me. And that meant the world to me. And there was one guy in the building that was very tall. My husband was six three and a half and weighed about 220 pounds, which is heaven knows how many stone. I don’t get stone. But anyway, so he was a very big guy. And I’m five foot one, although my doctor’s office lies and says, I’m five feet and a half an inch, which is a lie, it’s a lie. I’m five one, but I come from Russian peasant stock. And so I’m very strong, even though I’m old. And I could lift him. When he fell on the floor, I called this one guy in the building and he came and he is one of my neighbors. And he lifted him with no trouble, got him back in the chair. And the whole thing was probably five minutes from the time I called him to the time he came, the time we got Frank back in the chair and calmed down. And unfortunately he moved to California. I live in the Midwest. And I said, how are you going to pick up Frank from California? But here’s what I learned. And this was the biggest lesson for me, and this is the total takeaway for your listeners. If you need something, ask. Don’t wait for someone to volunteer. And don’t be unhappy if they say no. And it does sting if they say, no, it doesn’t feel good. But I didn’t get a lot of support from his family. And it hurt. It really hurt my feelings. But so many people that I asked said yes. And here’s the really sad thing is that people, well, this is the good news and the bad news, people are not mind readers. Which is good sometimes because you may not be thinking the kindest or the purest thoughts.
Paula: That’s funny.
Carol: So, that’s good news with mind reading. But you have to ask people, and you have to ask them very specifically, not, can you help me? But could you take care of Frank for 20 minutes while I go to the grocery store? Or whether I need to go to the pharmacy and pick something up, or, could you go to the pharmacy for me? And be very specific. And that goes for your employer. If you’re still working, it goes for your children. And if they say, I’m not comfortable with that, live with it. Some people are not comfortable as caregivers, and they would rather go to the pharmacy for you than to sit with your loved one. And some of my friends love to cook. I don’t, and I do, but I don’t like it. I like me a good restaurant. So, some of my friends who love to cook would call and say, what can Frank eat now? And so he was eating a lot of soup near the end because he was having trouble swallowing. And I had one girlfriend, I called the soup goddess, and she loved making soup. And it was what she cared about and did well, I would’ve never asked her to stay with him. Because she was using a cane and she couldn’t pick him up or help him up. So, being very specific and ask when you need help.
Tesse: Yeah. These are such good tips for people to ask good neighbors who can help. Occasionally one gets down because if people are human, you’re a human. And you’ve explained that. And I’m curious, Carol, because I was reading your post from the first day you started to even now I read your post today and stuff. Did you find in writing, did you find posting? Did you find that helpful?
Carol: Yes. For me it was posting. And I also, having been a professional speaker, to tell a story in one minute was a good discipline. You have to have a beginning, middle, and end. And every once in a while, I had to do it in two takes, but I almost always just sat down and did it. And I would think about it the night before, and it was a way to reflect on the day, what happened that I wanted to share. And I didn’t share everything by any means, but people don’t want to hear some of this stuff. But I got a lot of help. And here’s the great help I got that I would never in a million billion years have ever thought of this. One of the challenges with Lewy Bodies dementia is that the patients hallucinate. And there’s a drug called Carbidopa for the hallucinations, but it makes you wobbly. And he was already wobbly enough, so you don’t want to give him a dose so that he’s falling all the time. So I said, my husband’s having terrible hallucinations and they’re frightening. And does anybody have any solutions? And this woman wrote in with the most brilliant solution I would’ve never thought of. She said, when my husband had hallucinations that were frightening, I took a bottle of glass cleaner. I don’t know if you have Windex in the UK.
Tesse: Yeah, we do.
Carol: Okay. You emptied the bottle and she put magic water in it, and so he could use his hands. And she said, this is magic water. And when they come, it’s all been pretreated, so don’t have to worry about it. You can use as much as you want. And when the animals come, you just spray them. And they’ll go away. And so Frank couldn’t use his hands, but I said, I’ve got the magic water from the doctor, and this will take care of the people who keep showing up who you don’t want to have here. So, I would say, where are they? There’s one in the corner, there’s one in the corner. And I’d say, get out of here. Get out of here. You leave Frank alone, and I’d spray and spray and spray. I said, I got him. He’s gone. And I said, who else is here? I can’t see everybody. And he would point out and I’d say, what do you think you’re doing? You don’t belong here. You leave my Frank alone. And I would spray the water bottle and it worked. I mean, would you have thought of that?
Tesse: No.
Paula: No, never.
Carol: And that’s what happens when you share things, is that you get the value from other people’s life experiences that just would’ve never occurred in a million years. So, I’m so grateful to that woman. And he was able to calm down, and usually after we had sprayed all the magic water, he would nap for a while because it was exhausting for him to be hallucinating and frightened. And it took the fear away.
Tesse: Wow. Carol, that’s a great story. I remember that one.
Carol: You need magic water.
Tesse: Oh, now that you said it, in fact, I think I did read the posts when the person suggested it. And still have your own fan group.
Carol: Yes.
Paula: Thank you. Wow. And so, Carol, you talked, I mean, you built in a story you tell you are a professional speaker.
Tesse: You can tell. Yeah.
Paula: Yeah. We can tell. And that you built in your highs and lows in a humorous and very relatable way, to the extent that I’m even taking mental notes that is, and Tesse has audibly said she’s taking notes about the magic water.
Tesse: Oh, definitely. Oh, always.
Paula: Because something that we all, well, let’s talk about after you hit 50, it, it dawns on you that 60, 70, 80 is just around the corner.
Carol: You’re closer to the end than the beginning.
Paula: Yes. You’re so right. And so these are things that are real and not just, oh, that’s going to happen in like another 50 to a hundred years. It’s just around the corner.
Carol: I’ll tell you the other thing that helped Frank, and I’m sure you have these in the UK. But I got a digital picture frame, and eventually he couldn’t process enough to follow a story. And the TV that he watched had to be very sequential. So, I don’t know if you have the show Murder she wrote with Angela Lansbury. We watched that about five times the entire series. It’s like 24 per series. And it was like a hundred years. And it was something like 250 or 260 episodes. And we watched it two or three times, but it’s beginning, middle, and end. And there are no flashbacks. So he could follow it, and he loved Perry Mason, but he couldn’t follow that anymore. And so he would sit there and look at the digital photographs and you can load them, like my kids could load them from Boston. And my son who lived in St. Louis could. And he would just see pictures of our wedding and our kids when they were little. And it just seemed to bring him comfort. There was no noise and no sound. And some people respond very well to music, and you have to just try different things. But the digital picture frame seemed to really work. I have another friend whose wife has Alzheimer’s and she’s still alive. And every night he goes to see her, they live in a place where she’s in memory care and he’s in assisted living. And he loads a different trip every night that they took. And he talks to her about it. Remember when this happened? Remember when that happened? Look how pretty you are in that picture. Oh, I loved that blouse on you. You’re still beautiful now. And it would really calm her down before bed.
Tesse: Carol, I’ve known you for so long. I mean, I love you to bits. And this has been a really interest, I wouldn’t even say interesting, but it’s complex journey as well with ups and downs and highs and lows and tears and fears and such a mixture. I’m really curious about what success means to you and the light of this journey you’ve been on.
Carol: For me, success was being able to keep Frank at home. And as pain-free as possible, he wanted to stay at home and he died at home. And I was awake with him. And he died at four in the morning. But I was holding his hand. We were together. People want to die differently. I have another friend who died about a month ago, and when she died, quite different, she had pancreatic cancer and she was much more lucid than Frank, but she had her husband, her two daughters, three grandchildren, and five siblings and one nephew there. And that’s the way she wanted to leave the world surrounded by love and those who cared about her. And for Frank, it was a journey he wanted to take with me. So people are very different in what they want, and he wanted to stay at home. And that, for me was success. And that I didn’t go bonkers again and start scream and running into the night.
Tesse: That beautiful, beautiful. Paula, do you have any last question to ask Carol?
Paula: Yeah. And so, Carol, you know what you’re talking about, as we said a few minutes ago, is a reality. It’s something that all of us either going to face, may experience personally, it may happen to us, or it may happen to our loved ones. And so I was wondering if you had any last thoughts for people out there, because this episode is about your life caring for Frank. Do you have any last thoughts that you can share with people who are caring for others right now? Yeah, right now.
Carol: Tell people what you need. Tell people what your loved one needs. I needed conversation. He needed soup. And I got soup for him. And then when he fell, I had people to pick him up and I had people in my life to pick me up. So, ask for the help you need and graciously accept no when someone can’t give it, because this is a rough journey.
Paula: Wow. It’s indeed. It’s indeed. So people are listening to this, who are listening to this. How can they find you? Well, you said ask people what they need. And for you, it was conversation. Yes, Frank needed soup. But if someone wants to talk more with you to find out how you can help them go through the journey, where can they find you online?
Carol: I’m on Facebook, I’m on Instagram, I’m on YouTube. I think that’s pretty much it. So Facebook, Instagram, and it’s Carol Weisman4.0 on YouTube. And just Carol Weisman, W-E-I-S-M-A-N. And I’d love to hear from your listeners.
Paula: Oh. And so on that note, we want to thank you, our listeners because you’re such an amazing audience. Thank you so much for tuning in. We ask that you head over to anywhere that you get your podcast, whether it’s Apple Podcasts, YouTube, or Spotify, and subscribe to our channel. And if you love what you just heard, you always are asking for reviews, write us a raving One please. And if you have any questions or topics that you want us to cover related to leadership, governance, life in general, send us a note. Remember, it can be personal as well as professional. And last but not least, if you’d like to be a guest on this show, please head over to our website, which is TesseAkpeki.com/Tessetalks to apply. Carol, thank you.
Carol: Thank you.
Tesse: Carol. You’re brilliant. Love you. Bye.
Carol: Love you too, Tesse Blessed.
Tesse: Take care. Bye-Bye.