Hope for living, loving and caring with no regrets!

A Caregiver's Faith

Episode 43

This week, Rayna Neises, your host, interviews Eric Kolb. Eric, along with his wife, Cheryl, cared for her mother. It was their love for singing and their experience with caregiving that prompted them to create ‘Songs and Smiles’, a nonprofit organization dedicated to helping those with Alzheimer’s to connect with their joy-filled memories, as well as with their family, friends, and communities. He provides the following insights on celebrating, connecting, and applying this during the busy holiday season:

  • Fight back with joy by celebrating during the journey. Instead of skipping or canceling, you will be glad if you just make the necessary changes to do it differently.
  • Planning helps get everyone on the same page. Ask, “How can we put the loved one and the primary caregiver first?” Then, let the rest of the family adjust.
  • Assign a person to the loved one who can make sure that when they need it, they can take a break, have quiet time, go for a walk, or take a nap.
  • Consider spreading out activities over several days as much as possible.
  • One of the best ways to connect and celebrate is to sing together in groups and one-on-one.
  • Do not forget to take pictures as you create new memories!
  • Schedule phone calls with family as the loved one may recognize voices long
    after they can recognize faces.
  • Have family members send cards sharing memories that include the loved one.
  • During this busy time, it is even more important to embrace the moment, celebrate, and connect with your loved one. Be sure they are on the To-Do List and that they stay a priority.

Transcript

*Transcript is an actual recount of the live conversation

R

ayna Neises: 

Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises, your host and today I have a special guest Eric Kolb. Eric along with his wife, Cheryl created Songs and Smiles to support families during Alzheimer’s. The organization builds on lessons learned while caring for Cheryl’s mom, Trish. After losing Cheryl’s mom to Alzheimer’s in 2019, the couple decided to establish Songs and Smiles as a 501c3 nonprofit. Eric now serves as the organization’s full-time Executive Director. He loves singing and sharing with people who have, Alzheimer’s helping them to connect with their own joy filled memories, as well as with their family, friends and communities. Eric worked for many years in public relations and publishing. Including positions at the Texas Rangers Ballclub and Club Corp. He is an avid reader and also enjoys building Lego models. Eric and Cheryl met while attending Augusta College in Illinois. After getting married, they ended up graduating from Southwest Baptist University in Missouri. They have lived in the Dallas Fort worth area since 1994. Eric, it’s so great to have you today. And I just love what you’re doing, my personal story is obviously journeying with Alzheimer’s and I know music had such a huge impact for my family, but I love your heart for caregivers and helping them to understand what song and smiles both can do in that caring season. So tell us a little bit about your story, how songs and smiles got started.

Eric Kolb: 

Thanks, Rayna. Thanks for asking me today. Songs and Smiles is a relatively new non-profit. We just became a nonprofit in April of this year, but our story starts back in 2017. It starts with a birthday party. We spent many years caring for my mother-in-law, Trish. She had always, her whole life loved big birthday parties, especially milestone birthdays. And my wife, Cheryl, she worked as an event planner for years, too. We had originally thought, okay, for her 80th birthday, we’re going to have a huge party. By the time she was approaching 78, we realized we can’t wait for her 80th birthday. In fact, we realized that, if we had a party for her 78th birthday, she probably wouldn’t remember it the next day. So we had, so I say it started as a birthday party, but it really kind of started at the choice. It was a choice whether to even celebrate or not, and it would have been very easy to say, well, Trish, isn’t going to appreciate it, or she’s not going to remember it, or it’ll just be awkward for some of the family, let’s just skip it. But we are so glad that we decided to choose to celebrate. We invited the whole family to Texas, in the summer. We found that their community center was available, the weekend we won it. Trish had four of her grandchildren who had a band that perform together, traveled for a few years together. She would just love that too. She’s their biggest fan on them of course. And then we were thinking, what else would be fun to do as a family? Well, we have a friend who has an improv comedy troupe, and they specialize in family friendly, improv comedy. And we thought how it should be fun for our family to do. We just enjoy, you know, a good laugh all together. And a couple months before the event, Cheryl came home from work and she was like, you know, we have this big venue rented. We have some really good entertainment. A lot of people would probably enjoy this. I think we should throw up on the doors on Sunday afternoon and let’s do a fundraiser for the Alzheimer’s Association. And we got some silent auction items together. We ended up having a very successful fundraiser for the Alzheimer’s Association, raised more than $20,000 that afternoon. We threw out a bunch of different names that we realized, well, we have some music and comedy. We came up with Songs and Smiles. The name was very popular. It was a good, fun event and we realized that it resonated with people because people were understanding that Alzheimer’s, it’s a horrible, frustrating, painful disease but that we were fighting back with joy. That we were choosing to celebrate in the midst of Alzheimer’s. There were a few hundred people there that day, we were standing together saying even during Alzheimer’s, we can still find joy. And that was the origin of Songs and Smiles. But then we had to put it on pause for about three years, sadly, my mother-in-law passed away in 2019, it was unexpected at the time. We started talking about Songs and Smiles again soon after she passed. And we realized that we had survived our own caregiving journey, that we were still young enough and still have energy enough to help other people. And we felt that we could use Songs and Smiles to help other families, to bring joy to the Alzheimer’s journey.

Rayna Neises: 

And I love your heart is serving others because it is such a difficult journey. Like you, after losing my dad is when I began really supporting others because it is such a difficult journey, but we learn so much and there is so much that we can offer others. Being able to do that just brings joy. And helps the memories be even that more sweet I think, because we can keep our loved ones alive by sharing how much we learned from them and with them.

Eric Kolb: 

So true.

Rayna Neises: 

Part of your desire and really your mission is that connection. And connection is so important and it can be hard to maintain for family members with each other, but also for the person that they love that’s on the journey themselves. So tell us a little bit, as we’re approaching the holidays here, how do you see Christmas looking and what do you recommend for people who were caring for someone with Alzheimer’s?

Eric Kolb: 

I’ve been thinking about Christmas quite a bit. We actually live in grapevine, Texas, which is, called the Christmas capital of Texas. So the Christmas decorations and Christmas music come out early around here. And, I told ya even Songs and Smiles started with the celebration, celebrating is such an important, part of staying connected as a family. It’s easy during the frustration and pain of Alzheimer’s to say let’s skip it, but it’s so important to keep celebrating and to include your loved one in that celebration. And, as you say, we want to keep them seen not forgotten. They need to still be part of that and, I would just encourage families to celebrate also because it is so good to look back now and see the celebrating that we did. And it may be was difficult at the time. It could have been easier to say let’s skip Christmas this year, but we’re always glad we’ve made some effort to celebrate as part of, I love how you said living loving and caring with no regrets. Right? I don’t want families to regret that they stopped having Christmas or that they’re, they drifted apart because it was hard. Any celebration, but Christmas probably has to be different, when you have a loved one who has Alzheimer’s. So it starts with recognizing that yes, let’s celebrate, but we need to do it differently. and I think in most cases for our family to handle the holidays, it starts with planning ahead, maybe having a family meeting. Getting on the same page and thinking about what’s best for that person, the person who has Alzheimer’s and not everybody else. And then secondarily, I’d say, because often there’s a primary family caregiver, the one person who spends the most time and makes the most decisions the person closest to them. The rest of the family can support that person. And one way is by looking at the Christmas holiday and asking, how can we put the loved one who has Alzheimer’s and that primary caregiver first. And then let the rest of the family adjustis is so important.

Rayna Neises: 

That’s such an important thing to say too, because listeners are probably the primary caregiver and oftentimes we don’t voice our own need. As the disease progresses, what the celebration looks like has to change. But it doesn’t mean that as the primary caregiver, you can’t still participate in some of the family traditions and other things that maybe your loved one can’t by asking, can someone come and stay so I can go to that church musical or asking for the help that you need in order for you to be able to celebrate both with your loved one and in ways that are important to you.

Eric Kolb: 

Yeah. And I think, may look different and we may need to make adjustments, but that doesn’t mean that we need to throw out all of our traditions and stop doing everything that we were doing. We just need to look at them a little differently, and this year may be different with the pandemic, there might be some families that can’t get together, or choose not to get together. But then might be still some families who are already have been together. And, so this year I’ve been thinking a lot about how a caregiver can celebrate if they have a bunch of people still, or if it’s just them. Either way you can celebrate, if you have a family that gets together and you have family and friends around and you have lots of traditions, I think the first thing I would just say to that family when you’re celebrating, just assign a person to be with that person who has, Alzheimer’s during everything. Take turns doing that, okay, not just assign the primary family caregiver. If the other, other family and friends are coming to spend time with each other, that’s a good opportunity for them to give a break to the primary caregiver, to allow them, as you say, to celebrate. But assign a person. This might be a schedule for some families. It might be part of the planning there might be some people in the family that they don’t get a slot because they’re not the best person to be with them. Okay. But there might be five or six people in the family, they’re willing and able to take a turn. They can be a person assigned to be with them in the middle of maybe some hustle and bustle, to be paying attention to that, person’s response, to recognize if it’s time for that person to have a break. To maybe have some quiet time, maybe it’s time to go for a little walk or maybe it’s time for a nap. Or maybe they’re done for the day and it’s time for them to go home to not overdo it. And I think that assigning a person to pay attention to the person that’s very important. And then during all the hustle and bustle to also look for ways to create small group times often, there might be times where the person who has Alzheimer’s is enjoy being surrounded by a great number of family and friends. I remember being with my grandfather, talking with him well, after he knew who I was or could remember my name, but just knowing that he knew that he was surrounded by family who loved him. And he was enjoying that moment, whether he could remember my name or not, he knew that. But, often socially someone who has Alzheimer’s does better with a small group situation. I encourage families to think about, creating small group times, maybe it can happen naturally, maybe it’s just acknowledging it and asking everyone to look for small group times. Here’s a table over in the corner, or here’s a love seat and the couch and in the other room, that’s a good place to get away and have a little quieter time. You mentioned the different traditions of Christmas. I know my family traditions, including opening presents and going to church and caroling and different things. Well, sometimes we’d get together and we just do them all on one day, all in one night, everything happened. Right? If you have a loved one who has Alzheimer’s, I would really encourage families to consider spreading things out to maybe on one day where there’s going to church and maybe a different day when there’s opening presents or separating them as much as you can. It’s helpful to just not overdo it. I would say to any family, whatever size, one of the best ways to connect and celebrate together is to sing together. That’s how our family started singing together. well, before the pandemic, I would go to memory care facilities and sing with groups of people and, leading, online singalongs right now. And singing together is very important. I think many people are aware of the power of music to connect. there’s just something music connects us all with our own memories. We hear a song and we just go right back. That still happens. I’ve seen it so many times someone has Alzheimer’s, I’ve sung songs with people who I didn’t even think could talk and all of a sudden you sing the right song with them and that’s their song and it brings them back. There was a man. I, I had known for a couple of years. I didn’t know he could talk. And one day we sang, take me out to the ballgame. He just started telling me, he’d loved baseball. He played baseball. So music is very powerful, but in the context of celebrating Christmas, I want to remind families that singing together is very powerful, that it goes beyond just the particular song and then music, but there can be so much joy and as a family singing together, singing jingle bells or singing silent night. This is a hint for families, you need to be prepared a little bit. If you’re gonna sing together, make sure at least someone knows the songs, right? The first time we said, okay, let’s sing some Christmas songs. Great my mother-in-law Trish was all excited. So, what should we sing first? She said Jingle Bells. Okay, great. We’re sang Jingle Bells and then someone thought, well, let’s sing Silent Night. We could only remember one verse of that, but we sang it. And then my mother-in-law said let’s sing Jingle Bells. Right. And then we thought, okay, let me see, can we do a verse of Joy to the World? We got thru verse, and then my mother-in-law was like let’s do Jingle Bells. We didn’t have anything prepared so we sang Jingle Bells a bunch. Now we enjoyed it. Have at least someone who knows the words, or someone who has the words in front of them. Well, for our family, we figured out that having a little kid karaoke machine and putting the words on the TV really made it easy for my mother-in-law the sing, even though she did remember the words to most of those songs, better than most of us having the words presented to her, just made it a little more comfortable and made it more comfortable for everyone. So, singing together, is a great way to include everyone in the celebration of Christmas. The last

Rayna Neises: 

I love that.

Eric Kolb: 

them, I got to tell one more thing. Don’t forget when you’re celebrating, whatever you’re doing. Take pictures. Because you’re creating new memories. So take pictures or short videos or whatever, because you’re creating new memories that you’ll be able to share for the rest of your lives.

Rayna Neises: 

So good, because I think we often are so busy with all the to-do’s that we forget to take that time to celebrate and in the middle of the celebration to document it like that. And like you said, those pictures are very valuable especially once our loved ones are gone. You mentioned COVID earlier. So do you have suggestion for that person’s loved one that’s in the memory care unit and only one family member can go visit them at this holiday time?

Eric Kolb: 

I thought of, a few practical ideas. number one is to schedule some phone calls or some zoom calls or FaceTime. I’d say phone calls. We found when caring for Trish that she did better with phone calls and sometimes with Alzheimer’s we need to remember that the person may not recognize someone they’ve seen, but they may recognize their voice better. And so often, if we had a Christmas and say a couple of her children couldn’t make it home Christmas that year, we had arranged to call them. So it depends on the person for some, some people, a video call would probably be the best. And if you’re calling grandchildren, or little ones that’s probably definitely a great opportunity for them to see the person. So that’s something you can plan ahead too, still plan some times with the other, other members of the family and friends to do some phone calls. And, definitely as part of our celebration, remember past holidays. So that’s getting out albums or photos from Christmases past. In a lot of families, gift giving is a big tradition and all sit around the tree and open up gifts. And, you know, it’s wrapping paper flying everywhere and that’s something that a family might say, okay, well, it’s just going to be me on the loved one let’s skip that part. But that could be a really important tradition to your loved one. I know with my mother-in-law an if your familiar with the five love languages at all her love language is receiving gifts. Okay. If you, if your loved one and there’s love language is receiving gifts, you probably don’t want to skip the presents. And it’s easy to skip because for one, you think someone that they probably don’t need anything but they can feel the joy of opening a present. And, you know, in a way it doesn’t matter what it is, but you can probably think of something that’s special to them. My mother-in-law had a fascination, as she got older, with red cars. And whenever we just go driving around and she said, Oh, I love that red car. I’d like a little red sports car to drive that around, which is kind of out of character for her, but it’s something she loved. But anyway, we, we got her some little red cars, some little model red cars to the open. She loved them and it’s certainly a way that the other family members can participate too. And then, well, cards very important. If you’re the only one physically present with them remember to keep the rest of the family involved. Yes, schedule those phone calls, but also ask everyone to send a card and, and give them some tips, how to send the card. You know, I, I tell people, send a card, keep it, keep it simple. Right in it don’t write too much, like right on the inside panels. Don’t write on the backdown. So have it be continued but, and it’s okay if they just want to write we love you, sign their name, that’s still a card. That’s still a treasured memory. But encourage them if they can to write a shared memory in there. To write about a past Christmas and tell them maybe the further back they can go the better usually someone’s known them for a long time, just to encourage someone to write in that card. I was thinking about you today. I remember that one Christmas back on the farm when it snowed so much, we were in the house for three days or just some Christmas memory if they can share, we, we had to tell our family members often just how much Trisha enjoyed getting a card like that, some of them thought, well, this, she really appreciate it. The fact is that most of the time when she got a car and she appreciated it over and over and over Decorations should still be part of the celebration too. Now, you need to be careful it depends on the person. My mother-in-law for awhile, she really liked to kind of go out her room, just look like Christmas Wonderland. As she got older and that the disease progressed a little bit we started simplifying the decorations. Maybe you can go somewhere else with memory care facilities, often the common areas are decorated for Christmas very nice. So that’s really helpful, even if it’s not appropriate to decorate the room, but there are other decorations, maybe a short walk to just admire the other decorations in the lobby. For us, it worked well when we were caring very Trish, my sister lived 20 minutes away and we kind of asked her, yeah, we know you love the decorate and can we bring Trish over to see your decorations, she would love it. So my sister decorated and, and it was just fun to just take my mother-in-law there and to enjoy her decorations. And sometimes, we would just get in the car, just me and Trish, and drive around and see the lights. I learned after the first time I did that, that it’s good to plan ahead a little bit. Cause the first time it took us a while to find some good neighborhoods. So by the following Christmas, I had already known I’d scouted out some good neighborhoods that we could just drive through and look at the lights together. And that was, that was really special times. And I would say even singing one-on-one the same as with the large group singing together. Again, because it’s just a wonderful way to connect. And sometimes we have a hard time connecting through conversations because conversations have to happen differently than they used to, but singing together can still be a wonderful way to connect. I’ve been doing online singalong videos. I found it’s helpful for people who have Alzheimer’s make it as comfortable as possible for them. So when I lead sing alongs, I actually put the words black background, white letters, big type. So I use page flips, have good cues of what’s coming next and when you’re singing with someone it’s really good if you know the song if you’re singing it strongly too, that’ll help them. I’ll actually put myself on there singing. So there’s a smiling face singing with them, but then most of the screen is, is the words, in a very easy way to read. And, that’s just something that even if you’re one-on-one, if you’re sitting there if you have a TV or an iPad or a laptop, you can sing together. And I would say this again, too, even if it’s just, you take pictures, when they’re opening a present or, or whatever, take pictures, you’re creating new memories.

Rayna Neises: 

So many great ideas, Eric. I know this season is one that when we’re caring, we feel like there’s so much to do, but realizing how important embracing the moment and celebrating and connecting with our loved ones, they need to be on the to-do list. We need to figure out how to make sure they stay a priority in our lives. So thank you so much for some great reminders and tips on how to celebrate and connect during this Christmas season. You’ll definitely want to stay in contact with Eric at www.SongsandSmiles.com. They have some great educational resources and just have plans for some amazing things for their non-profits so support them as well. And thank you again for your time today, Eric.

Eric Kolb: 

Thank you. That’s a great being with you.

Rayna Neises: 

Just a reminder, ASeasonal Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, be sure to contact your local professionals and take heart in your season of caring.

Eric Kolb

Eric Kolb

Songs & Smiles Executive Director

Eric Kolb, along with his wife, Sheryl, created Songs & Smiles to support families during Alzheimer’s. The organization builds on lessons learned while caring for Sheryl’s mom, Trish. After losing Sheryl’s mom to Alzheimer’s in 2019, the couple decided to establish Songs & Smiles as a 501(c)(3) nonprofit. Eric now serves as the organization’s full-time Executive Director. He loves singing and sharing with people who have Alzheimer’s, helping them connect with their own joy-filled memories as well as with their family, friends, and communities.
Eric worked for many years in public relations and publishing, including positions at the Texas Rangers Baseball Club and ClubCorp. He is an avid reader and also enjoys building LEGO models. Eric and Sheryl met while attending Augustana College in Illinois. After getting married, they ended up graduating from Southwest Baptist University in Missouri. They have lived in the Dallas-Fort Worth area since 1994.

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Meet Your Host

Rayna Neises, ACC

Your Host

An ICF Certified Coach, Pod-caster, Author & Speaker, offers 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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4 Things you need to know as you begin your season of caring

4 Things you need to know as you begin your season of caring

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