“Emotionally it’s very difficult to start seeing the person that you love slip away. This is my second round of caregiving. My heart goes out to all carers of patients with dementia. It’s hard for the carers. Really, really hard. It’s hard for the person being cared for too. I can’t, you can’t take care of someone else unless you take care of yourself. I’ve been out five times in the evening in the last two years without my husband. That’s not much. As Frank’s ability to do things has decreased, my need to spend a little more time away to go to the theatre or whatever has increased.”
Carol’s honesty is heart-warming. Something most people will relate to is her Covid experience.
“I’m a very social person, and so being at home alone has really been difficult. And I wasn’t alone, I was with my husband. But having been on the road for 28 years and doing a hundred to 150 cities a year, this was really just like the door slamming in your face. And I’m sure a lot of people experience that and much worse.”
Carol shares her story of coping with Covid, running a business and dealing with a much-loved husband with Lewy Body Dementia and Parkinson’s disease. He also has spinal stenosis. She includes tips for self-care, caring for a loved one while running a business, and at the same time not losing your mind.
- Carol posts a vlog every day. Till date she has done over 600 one-minute spots. On LinkedIn they can be found @Carol Weisman.
- Many of us need some kind of a creative outlet. On Friday, Carol plays Bridge with her friends.
- There is a lot of scheduling around caring. Carol emphasises the importance of building in time for carers to reflect and evaluate where they are at. “Scheduling time for yourself really makes a difference.” says Carol. Ask what did we accomplish today? Some of the accomplishments, may sound so small, but they were so momentous.
- Want to help? Ask that person, what can I do for you? Know your own boundaries.
- Need support? If people say, what can I do? Have a list in the back of your head, because none of us will do anything “I knew what I needed, and I let people know what I needed. As a result of an appeal I put out, I met the grab bar guy”.
- Do some physical activity. “I have 10 hours a week to exercise”.
- Good employers make a difference. People don’t forget what you do for them and how you make them feel, if you have employees who are going through this, as an employer you can support them through it, or help them find support so that they can focus on the work. “Do the right thing for a great employee. Being kind to people is good business”.
- We are all different. As a carer you have different needs. “I need to move, and I need to be with other people. And for some people, they just need time alone. I need time with other people. It’s not easy to take that time away. Cause you do feel very selfish. At least I do. But I do it anyway, shares Carol.
- Create memories.” I wrote a book about Frank, and I wrote it for our grandchildren”. The grandchildren are starting to know what kind of person his grandfather really was before he started fading away. And that helped me a lot.
Carol finishes with a very special offer. “If any of your listeners need help with fundraising and are willing to work around my schedule and we can do it remotely. I’m glad to do a free consultation. Connect me at ‘Carol@boardbuilders.com‘. I’m glad to talk to anybody who needs a little help”.
00:00:00 Paula: Welcome to “TesseLeads” with your host Tesse Akpeki and co host me, Paula Okonneh. “TesseLeads” is a safe, sensitive and supportive place and space. In “TesseLeads”, we encourage our guests to share how they are navigating a diverse range of challenges and how they’re confronting their dilemmas and shaping their futures. Today we are going to have, or we have a special guest, Carol Wiseman. And our conversation would be “selfish versus selfless caring for others”. I’ll tell you a bit about Carol. Carol Wiseman is the CEO and founder of Board Builders, and today she’ll be sharing her story of coping with Covid, running a business and dealing with a much loved husband with Lewy Body Dementia and Parkinson’s disease. He also has spinal stenosis. Carol will include tips for self care, also for caring for a loved one while running a business, and at the same time not losing your mind. Welcome to “TesseLeads”, Carol. You’re amazing. You’re amazing. You’re amazing.
00:01:28 Tesse: Welcome Carol. You’re one of the special people in my life, and you know I’ve known that the last few couple of years have been hard for you. And really curious to know about how you have coped with Covid 19. How’s it been for you and Frank?
00:01:44 Carol Weisman: It’s been really rough and I think it’s been easier for us than many other people. Neither one of us got COVID before the vaccines, so we didn’t have to fight with all that and that we feel we’re very fortunate, and we were able to dodge that covid bullet. I know a lot of people died in those early months until the vaccines came out. But I’m a very social person, and so being at home alone has really been difficult. And I wasn’t alone, I was with my husband. But having been on the road for 28 years and doing a hundred to 150 cities a year, this was really just the door slam in your face. And I’m sure a lot of people experience that and much worse.
00:02:34 Paula: Yeah, I can only imagine how you feel. I mean, my mom just passed away and she had dementia. It was tough. It was really tough. And I’ve said to people, it’s like we lost our mom six years ago. Because she was a very dynamic woman, and at the end she was not the mom that we knew. So my heart goes out to you, Carol. My heart goes out to all carers of patients with dementia. It’s hard for the carers. Really, really hard. It’s hard for the patient too. But it’s particularly hard I think for the carers.
00:03:11 Carol Weisman: Well, and that’s really what we’re going to talk about today. I think, is how do you run a business and take care of a loved one and keep moving forward. For us, we’re a little older. My husband’s 71 and I’m 73. When he was diagnosed, I was 71 and we had savings, and so I didn’t have to go on the road and then I couldn’t go on the road because of COVID. We were very fortunate in that sense, and we don’t have the kind of health insurance you have in the UK. One third of all bankruptcies in the United States are because of health problems. So we were okay there and we had good insurance. But emotionally it’s very difficult to start seeing the person that you love slip away.
00:03:57 Tesse: Yes.
00:03:58 Carol Weisman: And also if you have a real partnership with somebody, and this may be an employee rather than a spouse. If that person is not your partner anymore, it’s very, very difficult, even doing the smallest things. You find out how much you depend on the other person. So my husband always did the dishes, and now I’m doing the cooking and the dishes. It’s just small things like that that start to mount up.
00:04:26 Paula: Absolutely. I can just imagine how you feel, or initially you felt lost.
00:04:32 Carol Weisman: Yeah.
00:04:32 Paula: Because you are a business owner, that in itself is stressful. And then compounded with a, not well, I should say, partner or spouse. That’s tough.
00:04:44 Carol Weisman: Yeah.
00:04:44 Paula: Really tough. Yeah. So I was going to ask you partially answered that question, How did you continue running your business?
00:04:53 Carol Weisman: It was very, very difficult. And one of the things that I did, I don’t recommend this to anyone. I wrote two books in 2019. And don’t ever write two books in a year, it’s a ridiculous thing to do. And they were both on planned giving and in other words, putting a charity in your estate. And I had all of the marketing tour lined up, and then Covid hit. So there’s a warehouse full of books because I haven’t been able to get on the road to sell them. And so I started really looking more and more to the internet and have sold some. But when I would do a speaking engagement, they may buy two or 300 copies of one of my books. And that was all lined up. And then it wasn’t. So it was a huge drop in income. And the other thing is if you have to do things differently, many people don’t want to pay for it. And that’s true with delivering things especially, I wasn’t delivering things. But one of my colleagues had a tour of, I think it was Montana. And he was going to do five cities that, I don’t know what the fee was, but let’s say it was $5,000 a city. So then they decided they wanted him to do it online and wanted to pay him the equivalent of one city.
00:06:13 Paula: Oh no.
00:06:14 Carol Weisman: Even though the same people, of course, you don’t get the same interaction with the audience. But he wasn’t going to be in Montana for 10 days. And they just thought it was so much easier, and of course it’s not. So that happened to a lot of my colleagues and it happened to me. Pricing things is very difficult when you start doing things online. And the other thing is, a lot of people, and again it depends on the business you’re in. But they give away free advice. And so who’s going to pay for your knowledge if you can get it for free?
00:06:47 Paula: Mm-hmm. Yeah.
00:06:49 Carol Weisman: That’s another big challenge in the online marketplace, unless you have a product to sell.
00:06:56 Paula: That’s true. And especially in a culture that loves free.
00:06:59 Carol Weisman: And I had, this was actually my second round of caregiving. I took care of my mother till she died when I was 45, and she had Emphysema. So we had about three years of really rough times. I’d get a call and she was in the emergency room about to be admitted, or she was in the ICU and they were going to trach her, whatever. So I managed to do this twice. It’s difficult.
00:07:24 Tesse: So Carol, one of the things that I do as a daily routine, I actually look out for your posts on social media. So either YouTube, or IG, or LinkedIn. And I really want to thank you for keeping us informed about your journey and what’s going on for you. And there’s always a hint of humor or somewhere there. That, you know, in the midst of everything, kind of like have a bit of a laugh. But you know, I’m really curious about how you are dealing with your much loved Frank, who I love dearly. I’ve had the pleasure of meeting him and being with you both over the years and stuff. But what’s keeping you going in this situation?
00:08:03 Carol Weisman: I think many of us need some kind of a creative outlet. And a lot of the people I’ve connected with, a lot of them are friends have found, whether it’s quilting, or needle point, or painting, or watercolor, or taking it up an instrument, or learning a new language. For me, it was doing a vlog every day, and I’ve done over 600. And there are one minute spots, and you can find them on LinkedIn under “Carol Weisman”, WEISMAN. And you may want to just take one look at it. If you’re not on this journey, you may not be interested. But it really gave me a way to assess where we were at the end of that day. So I would go to bed thinking, what did we accomplish today? Some of the accomplishments, they sound so small, but they were so momentous. One of them was to get Frank to stop trying to use a belt and use elastic pants. So this is not climbing Mount Everest, but for us it was. He did not want to give up wearing a belt, and he had neuropathy and couldn’t fasten the belt. You know, he said, elastic pants are for little children and old men. And I thought you’re in one of those categories, pal . And so the triumphs were frequently very small in comparison to getting your PHD, or having a baby, or anything really big. But they counted at the end of the day and I could share them. So my creative outlet was doing a one minute video a day, and it made me feel so much better. One of the other things that I learned, is that if people say, what can I do? Have a list in the back of your head, because none of us will do anything. So, you know, I couldn’t say pay my mortgage, that wasn’t going to happen. But I knew what I needed, and I let people know what I needed. So on Facebook, I posted that I was looking for a nurse’s aid or a nurse. And an old colleague of mine wrote back and said, my sister-in-law just moved to St. Louis where I live. She lives 10 minutes from you. She’s a retired RN, and she’s looking to work part-time. And our wonderful Janet came to work with us. And she’s been fabulous. But had I not put it out there into the universe, my angel wouldn’t have found me. You know, she’s got wings, but not sonar, she couldn’t see what I needed. And every time I’ve needed something, I’ve let people know. And that’s everything from I needed grab bars for the bathroom. And so I wrote on Facebook, “does anyone know anybody who installs grab bars”? And I met the grab bar guy, that’s his, that’s the name of his business. And so he installed all these grab bars all over the place. And so simply letting the universe know what you need, whether it’s a ride to the hospital or something to do with work. I have a friend now who has just moved to St. Louis recently, and she wrote to all of us who are in this women’s club. “who knows a good dog care, who will take care of our dog while I’m at the hospital with my husband”. And that was a big deal for her. And her dog is happy and now loving someone else probably. But she picks the dog up at night, and she can not worry about one more thing. The same thing goes if you have children or if you have a piece of work that you need some help with, can you take this on? So simply letting people know.
00:11:56 Paula: I guess that kind of rolls indirectly in a way to self care. Self care, you know, realizing what you need and expressing it in whichever method that works best for you. And in your case, you said social media really came into play in a big way in your life because the angel, you said without the wings, came and has helped you immensely. So I was wondering are there any other self care tips that you can share. I mean those two that you gave, oh that one about using social media is excellent. Anything else?
00:12:32 Carol Weisman: Absolutely. I schedule my time for myself.
00:12:36 Paula: Okay.
00:12:36 Carol Weisman: I have 10 hours a week that our nurse Janet comes, and I need to do some physical activity. And my husband walks very slowly now. It’s sort of like we look like we’re always in a wedding, you know, walking down the aisle, and he is 14 inches taller than I am. And can’t keep up with me. So it’s like a great day in a chihuahua. But now he can’t keep up. So I have 10 hours a week to exercise. And then on Friday I play Bridge with my friends. 50% of the women I play Bridge with are widows. So they’ve been through something and they know stuff. And we talk about really important things like curtain colors and you know, where you can buy this on sale. But I feel like I’m with my peer group and they all know what I’m going through. So finding your tribe, whether it’s online and there’s great sites for Lewy Body Dementia and chat rooms. And there is for just about anything, whether all of a sudden you’re a single mother or father because of divorce or death. And I’ve gotten a lot of help just putting questions out. And also feeling good about helping others that are struggling. So I think scheduling that time for yourself really makes a difference. And frequently, I mean, Frank doesn’t want me to go. It’s not easy. I’m not saying any of this is easy. He gets very upset when I leave, and very glad when I come home. And he always thinks I’m going to die when I’m gone. And something horrible’s going to happen. I’m going to be hit by a car or whatever, and he’s extremely anxious. But I have to go. I can’t, you can’t take care of someone else unless you take care of yourself.
00:14:34 Paula: Absolutely. Yeah. That’s very important. It’s like on the plane where they say it, you’re encouraged to put on your, you know, your mask first before,
00:14:44 Carol Weisman: Right.
00:14:45 Paula: Anyone else. Yeah. If you’re not well, your dependents won’t be able to depend upon you.
00:14:51 Carol Weisman: Well, and it’s not as easy as it sounds, because it’s like having to wrestle the mask away from them.
00:14:56 Paula: Yes.
00:14:57 Carol Weisman: To get it on. Especially someone in pain. Whether again it’s an employee or a loved one. You can’t break through that pain to say, I need something too. And It’s not easy, and you feel like a jerk sometimes leaving. Especially if it’s to do something frivolous like Play bridge. I’m not out curing cancer in my spare time.
00:15:21 Paula: Yeah.
00:15:22 Carol Weisman: But I need that time.
00:15:23 Paula: You do.
00:15:24 Carol Weisman: And I think that’s important if you have employees who are going through this. To support them through it, or help them find support so that they can focus on the work.
00:15:38 Tesse: I really like what you’re saying, Carol, because there’s a whole big thing around wellbeing and resilience and all this. But it’s kind of come down to things that are very practical. You know, you were saying that you would share things about not losing your mind while running a business. So what is keeping you sane? What’s keeping you with the program?
00:15:56 Carol Weisman: Pickle Ball and Bridge. Has Pickle Ball hit the UK? Yes? Well, it’s very big here. And my only goal with that is world domination. And so I’m pretty far away from that. But I need to move, and I need to be with other people. And for some people, they just need time alone. I need time with other people. But if you’re the kind of person who just wants to be able to go someplace, have a cup of coffee and read a book, you have to put it on your schedule. So that you have coverage for the person who needs help, and that can be a friend or a professional. And you go down the street and you bring your book and you sit quietly and read. Again it’s not easy to take that time away. Cause you do feel very selfish. At least I do. But I do it anyway.
00:16:51 Paula: And that’s why you’re here.
00:16:53 Carol Weisman: Up until about a month ago, I’ve been out five times in the evening in the last two years without my husband. That’s not much.
00:17:01 Paula: That isn’t.
00:17:02 Carol Weisman: But as his ability to do things has decreased, my need to spend a little more time away to go to the theater or whatever has increased. That’s been five nights in two years, and so it’s difficult. And one of the things that’s good and bad about his disease is that it makes him sleepy. There’s a huge problem with fatigue with Lewy Body Dementia and Parkinson’s. And so when he’s asleep, I read and I do my work, and I talk to my clients, and I do more and more pro bono. Because if I’m doing pro bono work, then it’s by my rules. It’s not my client’s rules. So I’ve really enjoyed, I’ve worked with the Russian orphanage on fundraising and a place in Haiti, and the Children’s Eternal Rainforest in Costa Rica. And so we can work worldwide, and I schedule it around Frank’s naps. So it’s a lot of scheduling. And sometimes it’s sort of like those news commentators, when the kids walk in and they’re on the on tv. He periodically pops in and my clients understand. And if they are not the type of people to understand, they’re not a good client for me, whether I’m paid or not paid.
00:18:27 Paula: Yeah, that’s so true.
00:18:30 Carol Weisman: The other thing I did that made a big difference for me, because one of the things I turned to. I’ve written 11 books, so one of the things I do is write. And I wrote a book about Frank, and I wrote it for our grandchildren. When he got sick, they were like seven, nine, and 11, and I thought, they’re never going to know who their grandfather really was. And so it’s 150 pages and it has 303 photos. And it’s not for sale publicly. It’s the shortest run ever. I had 15 copies. My grandchildren are now much older, the oldest one’s 14. And he starts to know what kind of person his grandfather really was before he started fading away. And that helped me a lot. And while Frank still could remember things, I would ask him, where did you go to high school? Who was your first date? If I find her, I’ll hunt her down. But actually his old girlfriend is a friend of mine from when he was 13. And they’re both in their seventies. And so I called her and she sent me some pictures of them when they were teenagers that went in the book. That really had meaning for me, and it also took my mind off of what was going on.
00:19:51 Paula: I love what you’re doing. I love what you’re saying. I mean, it’s so relevant. I mean, you’re hearing so much more. Maybe cause we are more aware of it. We’re hearing a lot more people who are, you know, battling Dementia of some form or Alzheimer’s. And these tips that you’re giving are really relevant. I wrote down some of them, which I think are pertinent. Like scheduling time for yourself, that’s really important. Asking for help on social media in particular, any way that you are comfortable with asking for that help. In your case, you started by writing a book for your grandkids. So you’re recording his life as you knew him before the disease got to it may most likely get him to. I think those was are excellent tips. And do you have any other ones?
00:20:43 Carol Weisman: I think it depends on what’s going on with someone in your life. So not everybody’s prognosis is as bad as Frank. So let’s say you have a child or a loved one or an employee who has cancer. Asking that person, what can I do for you? And knowing your own boundaries. I had a friend when we were both 45 who had cancer. And I said, what can I do to help? And she said, like what? Now, I’m not a great cook, and I don’t like to cook, and I do it every night. But Mary Berry is not worried about me taking over her job. And so I said, “can I drive carpool for you”? Can I run errands for you? And she said, “I have a carpool every Wednesday, are you available”? And I said, “as long as I’m in town, and if I’m not available, I will find someone else and you don’t have to do it”. So I drove her carpool every Wednesday until she passed away. And it was about two years. And driving carpool can be, you know, it’s like being on the front lines. Of course, sometimes when you’ve got kids that are like 11, 12, 13. Not the easiest ages, but we all made it work and the cooks cooked, and the drivers drove. And so offering, being very specific about what you can do and can’t do. My husband would work sometimes at night, and so I wasn’t about to say, I can come over and take care of your kids. I had my own small kids as well. But other people said, I’d be glad to come over or do bath time, put the kids to bed. And so being very specific about what your skills are, what your time is like, what you’d like to share, what makes sense. And again, I think flexibility, if you’re talking about an employee makes all the difference. One of the things I’ve noticed, I had a friend whose brother died of AIDS. And he worked for a motion picture company in California. He had been in the job for like 12 years, which is a long time. He was a lawyer. And his boss treated him so well, that he said he did just ignored the sick days and told Mark, take off as much time as you need. And even when he was in the ICU and dying, he continued to send a paycheck. And he said, there are so many people who have tried to recruit my team. This was the right thing to do for a great employee. But in fact it was a brilliant business move. Cause I know people try to poach my talent and they knew that if they got sick or had a loved one that was sick, that they would be treated just as well. I thought that was brilliant. When my friend talked to Mark’s boss to thank him for treating him, and he wanted to return the paycheck. The last paycheck arrived after Mark had died. And he said, put it towards funeral expenses. And then the entire group came in on a Saturday and did a quilt square for him. He said, I’ve never had such loyal employees. So being kind to people is good business.
00:24:07 Paula: Carol. Wow. You gave examples that I don’t think too many people think about, but they are important. That is part of life. Sickness is a part of life. And what you said about the flexibility for your employees, if you are a business owner. Realizing the worth of the value that your employees bring to your business. So much so that you support them, whether they’re well or not well. Wow. That’s a big deal, because loyalties go far, and we never, people don’t forget what you do for them and how you make them feel, you know?
00:24:51 Carol Weisman: One small thing that COVIID gave us, was a way to be flexible. Now there’s some jobs you can’t do remotely. You can’t deliver the mail. You can’t be a gynecologist. You know, there’s all kinds of stuff that you can’t and shouldn’t do remotely. But many things can, and just at the beginning of the pandemic, my son got a new job, and it was two years before he ever stepped foot into their office. He was an engineer and he worked at home with his dog Penny at his feet. And he talked to one of his coworkers, about a year and a half into the job, she said, I think your desk is next to mine. He had never been in the building. I think we have learned some flexibility. And so if you need to go to the hospital to visit a loved one or take them in for chemo or whatever, a doctor’s appointment. Then if you work till seven or eight at night or after you put your children to bed or your spouse or whatever. Or if you have insomnia, you can get it done at two o’clock in the morning. And we do have flexibility. So I think that is one of the few things we actually got out of this miserable pandemic, was a willingness and need for people to work remotely. Again, depending on the work you do.
00:26:17 Paula: Yeah. Some good did come out of the pandemic. Another great point you made was, when you’re talking to someone who’s ill, or their family members only volunteering to do the things that you know you’re good at, made me smile. But it’s the truth, you know?
00:26:34 Carol Weisman: Oh yeah. You don’t want a meal for me that I haven’t bought in a store, really?
00:26:41 Paula: Oh boy. Oh boy. Oh boy.
00:26:43 Carol Weisman: There’s nothing special.
00:26:44 Paula: Oh boy. Well Carol, I mean it’s been fantastic talking with you, but we want to respect your time. You said 45 minutes we’ve been talking to you for about that. You’ve been amazing. Tesse any other things to ask our amazing friend?
00:27:01 Tesse: I actually, I have no words for Carol. The kindness, the generosity, the humor you show, the courage. How brave you are. How positive you remain. You continue to be the gift that keeps giving. And I just want to thank you for this time that you’ve generously given to us and to say that our heart and our hopes and everything is with you at this time. And thank you for being so generous even at this time. Much love to you Carol.
00:27:31 Carol Weisman: Tesse, you and I have worked together all over the world. We’ve worked together in Australia, and Bermuda, and the UK, and the States. And I hope there’s a time where we’ll be face to face. And also if any of your listeners need help with fundraising and are willing to work around my schedule and we can do it remotely. I’m glad to do a free consultation. So it’s “Carol@boardbuilders.com”. I know the UK system is very different from America. I’m glad to talk to anybody who needs a little help.
00:28:07 Tesse: I’m sure people will be calling you on that, you know. And all I can say is, you’re just amazing at your fundraising. And you’re also very successful at your dating advice, so , you know.
00:28:20 Carol Weisman: Also call me if you need dating advice.
00:28:23 Tesse: You’re very good at it. You’re very good at it. I have to say.
00:28:27 Paula: Oh boy. Oh boy. Oh boy. Well, we do have to wrap up here.
00:28:32 Carol Weisman: But thank you, Paula.Thank you Tesse as always.
00:28:37 Paula: Carol Wiseman, we want to say on “TesseLeads” everybody’s stories matter. Your story has mattered. It’s important for people to hear as caregivers what the life is and what help they can get from listening to you. You’ve been an amazing, amazing guest. Not that our other recorders weren’t amazing. But at this stage of your life and this stage of many people’s lives who need to hear this.
00:29:06 Carol Weisman: To share, it’s a gift for me.
00:29:08 Paula: It’s a gift. Yes. Yes. Yes. So I’m just going to formally end this. So for our listeners, as you’ve heard, our guests, Carol Wiseman talk about self care as a carer We want you to know that your precious stories and your lives do matter to us. Sharing them, that’s your stories, with others could support, encourage and nurture them. Listeners may be reassured by knowing that they’re never alone. That’s a fact. And for our listeners, we ask you to head over to “Google Podcast”, “Apple Podcast”, “Spotify”, anywhere where you listen to podcast. And please listen to some of the other stories we have, because it’s all about you. And if you would like to subscribe to “TesseLeads”, please head over to our website, which is “www.tesseakpeki.com/tesseleads. Drop your comments. Or even if you’d like to be a guest, reach out to us there. Thank you again, Carol, you have been, for want of a better word, I’ve used the word so often. You have been amazing. Thank you.
00:30:16 Carol Weisman: Oh, thank you. It’s been fun for me.
00:30:19 Tesse: Yeah. Awesome, Carol. Thank you so much.
00:30:21 Carol Weisman: Next time in Bermuda, ladies.
00:30:23 Paula: How about that. I say yes.
00:30:26 Tesse: I say yes.