Hope for living, loving and caring with no regrets!

Cooking up caregiver success

Episode 119

This week, Rayna Neises, your host, speaks with Toni Fisk. Toni has been in the food and hospitality industry for over 35 years and is now an author. She is also a professional speaker with multiple dementia certifications as an educator and trainer working with professional care partners and family members. As a Certified Dietary Manager and a Senior Living Dining Operations Consultant, she has a deep commitment to education and enlightenment in the care of persons living with dementia. Toni shares the following insights:

  • (5:13) If you engage the person and have them participate in the menu selections, it makes for a happier person.
  • (6:00) They want something that tastes great, has a nice texture, the hot food is hot and the cold food is cold, and it is served on time.
  • (8:10) Part of working with our elderly is understanding them, their roots, and their upbringing.
  • (10:00) Regardless of the presentation (pureed, soft, ground, fine dice), we can still have flavorful food.
  • (14:00) People need to change their mindsets about how they interact and behave with people living with dementia.
  • (15:14) Check the environment:
    • A wheelchair should go underneath the table
    • Check the placement of plates and bowls
    • Notice any tremors
    • Utilize nice clothing protectors
    • Keep the volume on tv and radio down
    • Reduce idle chit chat
  • (19:00) Need to make mealtime a successful activity for them to eat.
  • (21:52) Toni’s book, Dining with Dignity: Unlocking the Mystery of Dementia and Dining, is available on Amazon and Barnes and Noble.  You can contact Toni directly through her website at dinnerwearhc.info.
  • (23:15)  No Regrets: Hope for your Caregiving Season is turning 1!  A walkthrough is starting on June 6th.  There is still time to sign up at www.aseasonofcaring.com

Transcript

*Transcript is an actual recount of the live conversation

[00:00:00] Nadine Roberts Cornish: It’s recognition and acknowledgment, it’s very beneficial in helping us maneuver through the process, with a little more ease and grace when we know what it is, but we have an idea of what to expect and that, wow, okay, this is normal. This is part of the journey.

[00:00:20] Rayna Neises: And that’s Nadine Robert’s Cornish, our guest today on A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises, your host and let me introduce you to Nadine. Nadine Roberts Cornish, Certified Senior Advisor, Gerontologist, Author and National Speaker is the founder of The Caregiver’s Guardian LLC. With a background in public health Nadine began her most important role as a 15 year caregiver to her mother. Her personal journey would morph into a now 13-year-old business TCG providing coaching and consultation services to family caregivers across the [00:01:00] country. CAREE- Caregivers, Advocacy and Resources, Empowering Employees and Employers. It’s TCGS newly minted program for businesses and organizations. Nadine is the author of Tears in My Gumbo: The Caregivers Recipe for Resilience and Prayers in My Gumbo: The Caregivers Recipe for Peace, which are all part of the multi-book Caregivers Gumbo Series. Currently under construction is her latest book Recipes in My Gumbo: A Collection of Soulful Recipes and Heartfelt Stories by Family Caregivers. She is founder of the 10, 10 30 campaign, 10 random acts of kindness, 10 books to caregivers in 30 days. Now it’s third year in honor of National Family Caregivers Month held in November.

[00:01:49] Welcome Nadine. Thank you so much for being here today. 

[00:01:52] Nadine Roberts Cornish: Thank you so much for inviting me, Rayna.

[00:01:54] Rayna Neises: You are such a busy girl. Um, but we’ll get into all those great things that you’re doing. Why don’t you start off [00:02:00] by sharing a little bit about your caregiving season with your mom. 

[00:02:03] Nadine Roberts Cornish: So Rayna, like your listener caregiving chose me I did not choose it. It was not the vision that I had for my life. I was already living my best life, I did not need any interruptions. And one day the phone rang and everything changed. My mom was diagnosed with a pituitary brain tumor and, she shut down the moment she heard that she had a brain tumor. She I used the term white coat syndrome sometimes. And a lot of people don’t know what that is because a lot of doctors don’t wear white coats anymore. 

[00:02:40] Rayna Neises: true. 

[00:02:40] Nadine Roberts Cornish: Right. But my mother upon hearing her diagnosis basically couldn’t hear anything else. And so I immediately became her advocate. I became her partner the process of learning and understanding what this brain tumor meant. How it was already affecting her [00:03:00] and what we could do about it. And for my mom, doing anything I like removing the brain tumor meant that she would likely become blind. And so that made it extremely difficult for her to make a decision. So it took two years for her to decide to do something about this very rapidly growing brain tumor. 

[00:03:23] Yeah. And so you know, we got through that particular part, but, we didn’t know. We, I had no idea when that phone rang that my life would be changed forever. I had no idea that my mother’s life would be changed forever because as is typical, when you start to deal with one scenario, one medical condition there are a multitude of others that are waiting around the corner that you can’t see that you’re completely unaware of. And you’re oftentimes blindsided by. So we went from a [00:04:00] tumor to dealing with diabetes and high blood pressure, which led to a massive stroke. 

[00:04:05] Rayna Neises: Oh, 

[00:04:06] Nadine Roberts Cornish: You know, and then from a stroke, she had congestive heart failure. It was one thing after another, after another, after another. And my mother would ultimately succumb to stage four breast cancer. She had been hospitalized seven times in the course of the very same year that she was diagnosed at stage four with breast cancer. Yes. Yes. And so it was one of the most tumultuous, unpredictable crazy journeys that you’d ever wanted to travel. 

[00:04:39] But my mother being who she was was absolutely not going to travel that journey alone. I was going to very much be her partner through all of it. I had five siblings and on some days I had really good support from some of the siblings. And on other days I felt very much like an only [00:05:00] child. And I would say my mother spent the last three and a half years of her life living with us. We relocated her from her home in California to our home in Colorado. And the quality of life that she experienced was exponentially better once she moved in with us.

[00:05:21] And it was difficult. There were days where I cry. There were days when I scream and there were other days when I said, I’m not pulling my hair out of my head today. I’m not going to do that today. Today. I’m going to find something to punch. You know, and eventually I got to a point where I just decided to stop fighting because when you become an advocate, when you become the caregiver warrior, you tend to constantly be in battle mode. I was absolutely in battle mode. And I ultimately decided that I was not going to [00:06:00] continue in that mode. I was going to stop fighting and I was going to start accepting. I was going to start surrendering. I was going to start finding grace in this process and I needed to do that because my mom has stopped fighting..

[00:06:16] Rayna Neises: Mm. 

[00:06:17] Nadine Roberts Cornish: Yeah, she got to a point where she said enough is enough, but I fought for two more years, right? Yeah. Yeah. And ultimately, ultimately I recognized that I needed to be on the same page that she was on. I can no longer drag her along to do what I thought was best to do what I believe should be done. Right? And that was tough, cause you know, I was large and in charge and what I was doing for the most part tended to be working. I knew how to advocate. I knew how to research. I knew that no was the default and so no, [00:07:00] never bothered me, I was already ready for it. It was like, okay, bring on another one and bring on another way because I will wear you down until I get the yes that need.

[00:07:09] Rayna Neises: I can really relate to that, my personality is that push, push, push personality. And that was definitely one of the things I think a difference in our journeys is that knew I was dealing with Alzheimer’s and there was getting better. And so for me, I wanted to push and advocate for the best care. And my little slogan in my brain was always, I want him as happy and as healthy as long as possible, but I also knew that it wasn’t going to be forever.

[00:07:40] And so I literally, the last year of his life, my prayer was Lord help me know when to stop pushing. And I really did get that confirmation just three days before he passed away, there was a change in him and there was a confirmation in my spirit that, okay, it’s time to stop [00:08:00] pushing. He’s done pushing. You need to let go and let’s walk this all the way to the end. Not easy to hear, but so thankful that I was open to hearing that because it is so hard. I think we can become like bulldogs. We see our goal and we’re getting there no matter what. Right? And that means dragging our loved one along then that can happen. 

[00:08:24] You mentioned that shift that happened for you. Is there anything specific that caused It or what, what made you feel like you made that shift?

[00:08:32] Nadine Roberts Cornish: Yeah, it was a hospitalization that she had and I think it was probably a year before she passed away and it was Thanksgiving and she had suffered a seizure and we raced to the hospital again. And she asked me, she said, why are we at the hospital? And I said, you had a seizure. And she said, I don’t want to do this anymore. I can’t, I, I lost track of the [00:09:00] number of hospitalizations that she had. And she said, I don’t want to do this anymore. During that stay, she coded. And she was a DNR. I was outside of the room when that happened and I’m watching what’s going on and I couldn’t, I couldn’t tell them to stop. I couldn’t tell them to stop. And she, she got through that and she told me, she looked at me and she said, promise me, promise me that you’ll never, you’ll never have them do that again. 

[00:09:34] Rayna Neises: Oh, 

[00:09:35] Nadine Roberts Cornish: Yeah. And so that was, that was, that was it. I was finally willing to hear her at that point. And my, you, she hadn’t been diagnosed with stage four breast cancer at that point. No. Yeah. Yeah. So it was a it was an, aray of different illnesses. And I say now that all of that was training ground for the work that I would ultimately [00:10:00] do. I didn’t choose this. It chose me for real, and it is very much part of my calling now. And I know that the various illnesses and diagnosis and experiences that we had were not just for us. I came to understand that, mom didn’t go through all of this for herself. She went through this so that I could be a witness. And so that I could literally be a support to other caregivers that are going through a similar journey.

[00:10:35] Rayna Neises: It’s a calling, it’s such a precious calling to be able to come alongside others and encourage them in the journey. And it definitely is something that we just can’t not talk about. Right? 

[00:10:49] Nadine Roberts Cornish: Yeah. I mean, it’s, it’s what we’re here to talk about, you know, and why it’s so important that we share our stories and I encourage every other caregiver to share their [00:11:00] story. Don’t keep what you’re going through and what you’re experiencing to yourself. Your message is important for someone else, even if you can’t even imagine how it might impact them or what they can learn from, from what you share, it’s encouragement, it’s inspiration, it’s knowledge, and it’s important.

[00:11:22] Rayna Neises: So true. So what in the world does gumbo have to do with caregiving? 

[00:11:27] Nadine Roberts Cornish: Okay, well, Rayna, I am from New Orleans, born and raised, or New Orleans as those who are not from New Orleans, like to say. So born and raised and my caregiving journey was a lot like making gumbo. A whole bunch of different a really messy sloppy process sometimes. You know, oftentimes, you’re looking at the gumbo and the ingredients and it’s like, this is a mess. This is an absolute mess and so was caregiving.[00:12:00] But oftentimes in New Orleans, we would make gumbo in community. You can make it by yourself. I liken that to the caregiving journey you can take care of your loved one by yourself, but boy, it’s a whole lot better if you’ve got other people supporting you in the process.

[00:12:21] And so with gumbo, there’s usually somebody peeling the in the shrimp and then there’s somebody chopping, the meats and the vegetables, and then there’s somebody making the Ru. Right. And when you do it like that, there is this symphony of magic that’s happening and taking place. And it comes together and after a while you know, a while of simmering, a while of cooking, you can’t fast cook gumbo. Shouldn’t fast cook gumbo. And if you taste it prematurely, it’s not so good. 

[00:12:54] But if you allow it to marinade and you [00:13:00] allow it to come together, as it’s designed and its own good time what’s created is absolutely unbelievable. And the caregiving journey, same way. You don’t understand half of what you’re dealing with while you’re in the process, oftentimes, but it’s afterwards, after you’ve given it time to marinate. After you given yourself grace, after you’ve given your loved one, grace that you realize, wow, There really are some amazing nuggets here. There really are some experiences that have filled with grace and I really am growing and my patients and my character and my ability to love unconditionally and my ability to show up, even when I never thought I could or would. Right?. Yeah, great. Or want it to, right? And so that’s the [00:14:00] correlation for me and my caregiving journey. It was like, man, this is a big old, messy pot of gumbo, but eventually the mess turns into a message. The mess turns into the most nourishing delicious, amazing meal that you could possibly create. That’s the caregiving journey.

[00:14:22] Rayna Neises: I love that. And two people don’t make gumbo the same. 

[00:14:26] Nadine Roberts Cornish: Absolutely not. Yes, indeed. Yeah. You can actually make a pot of gumbo this month and have all of the same ingredients and go back and do the exact same thing next month and they can taste different. Still very good but they’re going to be different. And so it’s a really unique experience. And it’s one of my most cherish dishes because my mom taught me how to make Gumbo.

[00:14:54] Rayna Neises: Um, 

[00:14:55] Nadine Roberts Cornish: And throughout my life, I never, I never even [00:15:00] considered making gumbo without my mom supporting me. It wasn’t until she passed that, I realized that, Hmm, I never wrote that recipe down. I never, ever, allowed myself to imagine that there would come a time when she would not be available. When I couldn’t pick up the phone and call her and say, okay, this is what time we’re going to get started. So, you know, block out three hours so we can get this done, right?

[00:15:29] Yeah. Yeah. But through grace, I was able to go through the process of making the gumbo, putting together all of the ingredients and I always say her spirit and led me through the process. And I prematurely tasted the gumbo and thought I had absolutely ruined it. And you know, cried myself to sleep, put the alarm on and woke up. And I thought I was waking up to a burnt pot of gumbo but instead I was waking up literally to the aroma of my [00:16:00] mother’s gumbo. 

[00:16:00] Rayna Neises: Um, 

[00:16:01] Nadine Roberts Cornish: And so recipes is so important, you know, for families. They’re so important for legacy. And so it’s the gumbo, it’s all about the gumbo. So we created the Gumbo Series of books, starting with Tears in My Gumbo. During the pandemic, 40 caregivers across the country sent in their offerings for Prayers in My Gumbo. Yeah. And now we’re working on an actual cookbook because everybody believed that Tears in My Gumbo was a cookbook. I’ve had so many requests for the recipe for my gumbo. And so it’s like, okay, we are going to create Recipes in My Gumbo at will include my gumbo recipe, along with recipes from caregivers across the country, along with their stories, what they want to share around what this recipe means to them and what their caregiving journey has been like.

[00:16:59] Rayna Neises: That’s so beautiful. I [00:17:00] love that. I mentioned before my mom was diagnosed with Alzheimer’s when I was just 16. And so her ability to have a conversation or to be able to really share her own thoughts was quickly gone. So. I was probably 20 the last time I remember actually having any kind of conversation with her, but finding her recipes as a young adults and being able to cook those special dishes that she made. I was so thankful she wrote them down, some many people of the older generation, it’s only in their head. And so we can’t get it out of that, but it’s so important to share those recipes and such amazing memories come from being able to smell that food. Doesn’t it? it is so precious. So that’s going to be a neat publication to have people sharing those memories. That’s going a book that will 

[00:17:51] Nadine Roberts Cornish: Okay. 

[00:17:52] Rayna Neises: just share that with people. I think the best cookbooks I own are cookbooks that came from groups and organizations that published them. [00:18:00] It’s going to be great to be able to see all the wonderful recipes and read the memories that people are sharing. 

[00:18:05] Nadine Roberts Cornish: We’re really excited about it. Yes.

[00:18:09] Rayna Neises: So caregiving is this process that we all go through. What do you say? What’s is it here to teach us?

[00:18:17] Nadine Roberts Cornish: So it’s a very individual, it’s a customized lesson, right? Some of us Rayna, are here to learn patience. Some of us are here to learn resilience. Some of us are here to learn forgiveness, right? And some of us are here to learn how to surrender and there are a multitude of lessons. And the lesson is revealed when we’re ready for that lesson, when we’re ready to understand what it is. Right?

[00:18:56] I believe it’s one of the most transformative [00:19:00] processes that we have in our lifetime. When we say yes to the assignment of caring for someone or when we are voluntold for the assignments. But when we embark upon that journey, we don’t know, we don’t know how long it’s going to be oftentimes, we don’t know what it’s going to ask of us. So many people who are on the outside looking in, we’ll tell a caregiver, oh, I don’t know how you do that. I don’t know how you did that. And the caregiver’s response is, I don’t know how I did it either. I didn’t know I could do it. I didn’t know I would do it, but somehow you get the strength, you get the grace, you get the capacity to do what must be done in that moment. For that time for that season. And you simply do it. Especially when we’re talking about our parents . 

[00:19:57] For most of us, our parents did [00:20:00] for us. And oftentimes we don’t know how or why they did what they did to the extent that they did it. Right. But they did, they showed up and they did it. And just believe that we all are given the capacity to do that when we were first of all, when we asked for it, right. Because it’s not necessarily innate. We have to work on skillsets and we often have to work on shifting who we are, who we believe ourselves to be. Right? 

[00:20:33] I have one friend who was super prissy as a kid, you know, she became a caregiver and you know, if you’re prissy, you’ve kind of have to release some of that. In order to put on the gloves and dig in there and do, what’s gotta be done. Right. Being prim and proper might not get you through the day, you know? And so developing the attributes that you need to develop grit and grace is one of them can do [00:21:00] mentality a will do mentality and I’ll figure it out mentality is what we do. We roll up our sleeves and we get it done.

[00:21:10] Rayna Neises: And even sometimes when we look back on our day or on the month before , we don’t even know how we did it, but we did. We found what we needed to do that. And I do think it is important to realize that it is a refining process and it’s not easy, but it’s beautiful. And you will walk away with so many blessings and like you said, character development and relationships just so many things that are so important.

[00:21:40] So five steps conscious caregiving. What are those five steps? 

[00:21:44] Nadine Roberts Cornish: Yes. So five steps to conscious caregiving. We’re all familiar with them. Step number one is typically when we begin the process begin the journey. It’s that feeling of helplessness? This idea of what in the world am I doing here and how am I going to do [00:22:00] whatever it is that needs to be done? Right? Sense of helplessness. We don’t get to spend too much time there, especially when it’s an emergency situation and your loved ones in the hospital, and they’re coming home and life is going to be different. Or there’s been a diagnosis that says life from here on out is going to be different. So most of us experienced helplessness.. And then from there we go to recognition. Recognition that we don’t know what we don’t know. 

[00:22:28] Rayna Neises: Hm. 

[00:22:29] Nadine Roberts Cornish: Okay. Especially when we’re accustomed to being so competent and all of these other areas of our lives, right. know what to do. We know how to do it. We know what needs to be done. A lot of times the caregiving journey you have no idea. You don’t know about the Medicare and all of the nuances associated with Medicare. Long-term care. You don’t know about that. don’t know whether or not your parents have long-term care insurance. You have to go on a fishing expedition. So [00:23:00] recognizing that don’t know what you don’t know. Is a part of the process makes it palatable, it makes it feasible. Okay. This where I am and I’m okay. Then from there we go into the process and you’re there a long time. In process, you’re figuring it out, you’re figuring whether or not he can be a caregiver, you’re figuring it out what are the resources available? Especially if my loved one’s going to need around the clock care. What’s what are the facility? What is a CCC, continuum care community? What does that mean? Right. You’re figuring everything out. Who in the family can support this effort?. Who will support this effort? Is this going to be a deal where I’m going to have to take the reins? Right? Because either my parents can’t or there is no one else. Right? 

[00:23:50] So process process, you’re working through you also figuring out what are your limitations? What can you give? How much [00:24:00] can you give based on the reality of your circumstances. And so processes is amazing thing that we’re working and figuring out. And then from process, we move into acceptance. Acceptance, we spend a lot of time fighting being bullheaded, like we talked about earlier and you know, we’re going to control this. And when we finally recognize that we that we are not as in charge as we think we are, we will move into acceptance and from acceptance it’s surrender. And then surrender, it’s tapping into your higher source. And recognizing that it’s not my will, but it’s Thy will, that will be done. And so this is cyclical it is not a linear process. You might be at helplessness today and tomorrow you’re moving and grooving into process. And something happens that you’re feeling that helpless all over again. And then you get to a place where you’re at acceptance. And you [00:25:00] acceptance, back to recognition. don’t know what I don’t know. Right. ? So it is just a cycle, very much a cycle that we experience throughout the caregiving journey.

[00:25:14] Rayna Neises: I think it’s so important to realize that we don’t ever arrive because there is so much to learn and buy gum if they don’t keep giving us new things to learn about. Right. So it was like all the way through the process. You’re experiencing one more thing. I often share the story when my dad was struggling with constipation and I was like, I had no idea poop was so important. Or how much there was to learn about poop, so, it’s just other so much and the new challenges bring us, like you said, right back to the beginning again of just that, oh my gosh, what am I going to do? I don’t know how to do all this. And then, I would imagine that the sooner we learn that step, even naming [00:26:00] the process can be helpful to us. To identify where we are so that we can look to move to the next step maybe a little faster than we did when we were there the first time. 

[00:26:11] Nadine Roberts Cornish: Absolutely. It’s recognition and acknowledgement, right? It’s very, very, I think beneficial in helping us maneuver through the process, with a little more ease and grace when we know what it is, but we have an idea of what to expect and that, wow, okay, this is normal. This is part of the journey. Right? And so. I applaud those caregivers who say yes to learning more. Who are listening and who are considering, okay, this is something else that I can do to help myself through this journey.

[00:26:47] Rayna Neises: Well, I love too that you mentioned within process that you’re exploring and you’re learning because you learn also who those go-to people are that know something that you don’t, or that have experienced it [00:27:00] already so that they can point you to resources and be able to move through that phase again, a little faster, because you actually are asking for help and not expecting yourself to know all the things you really don’t know. 

[00:27:13] Nadine Roberts Cornish: Exactly. It’s permission. 

[00:27:15] Rayna Neises: Yes. 

[00:27:16] Nadine Roberts Cornish: So many ways. Yes.

[00:27:18] Rayna Neises: Well, our time has gone. Thank you so much for sharing your wisdom and your experiences, Nadine, my listeners know the best way to get in touch with you.

[00:27:27] Nadine Roberts Cornish: Thank you so much for having me Rayna and guys, you can reach out to me at TCGCares.Com. That’s T as in Tom, C as in cat, G as in George, CARES .com. And if you want to chat, you can always give me a call at 303-394-1963. 

[00:27:50] Rayna Neises: Listeners take advantage of all that Nadine has to offer, you will definitely enjoy her book Tears in My Gumbo. I would highly [00:28:00] recommend you checkout a copy of that and then just stay in touch with all the great things she has going on.

[00:28:05] Thanks again for listening today. And just a reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have financial, legal or medical questions, be sure to consult your local professionals and take heart in your season of caring.

Toni Fisk

Toni Fisk

Author, Dementia Educator and Trainer & Senior Dining Consultant

Toni Fisk is the published author of 2021 Amazon #1 Bestseller “#dinewithdignity Unlocking the Mystery of Dementia and Dining,” in addition to several professional publications. She has been engaged in the food & hospitality industry for over 35 years, her professional career beginning at Walt Disney World/EPCOT Center and Marriott Hotels before transitioning to Healthcare and Senior Living. Toni’s daily operational engagement at Senior Living Communities across the United States stoked a concern regarding the care, training, and tools that were accessible to all the pillars of support services who were caring for our Elders, particularly those living with dementia.

Toni is a professional speaker, with multiple dementia certifications as an educator and trainer, working with professional care partners and family members. As a Certified Dietary Manager and a senior living dining operations consultant, she has a deep commitment towards education and enlightenment in the care for persons living with dementia. 

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Meet Your Host

Rayna Neises

Rayna Neises, ACC

Author of No Regrets: Hope for Your Caregiving Season, ICF Certified Coach, Speaker, Podcast Host, & Positive Approach to Care® Independent Trainer offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected

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