Susan Stern: 0:00

I wanted my mom to understand that I wanted her and she wanted to do what she could for herself. And then what she couldn’t do, then I would help her with that. And even now, in the later stages of her dementia when she’s feeling some anxiety I just remind her, I say, Mom, we’re partners. I got this.

Rayna Neises: 0:18

Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regards. And that was our guest, Susan Stern Susan’s episode is our third most listened to episode in 2022, so I’m excited to bring that to you today. This is Rayna Neises, your host and today I want to introduce you to Susan Stern. Susan is a wife, mother, and the primary Caregiver to her mother with Alzheimer’s disease. She was also a long distance caregiver to her father who had cancer. After 20 years as a Speech Language Pathologist, Susan changed her career path to pursue her calling, to support other family caregivers. She did her training at the Institute of Life Coach Training and became a Board Certified Coach in 2019. In her business, Spring to Life Coaching, Susan provides one-on-one coaching to overwhelmed family caregivers who want to improve their self-care and life balance. Susan’s focus is to support caregivers and growing their personal resilience so they can be stronger during one of life’s most challenging seasons. Thank you for being here, Susan, I’m excited to talk with you today.

Susan Stern: 1:28

Thank you Rayna, I’m so excited to be here.

Rayna Neises: 1:30

So mom is in the journey of Alzheimer’s tell us a little bit about your caregiving with her.

Susan Stern: 1:35

Yeah, she was diagnosed in 2014, so I’m on my eighth year of caregiving for her and she has been in memory care for the last three years. So I’m very blessed, just 15 minutes away.

Rayna Neises: 1:50

Oh, that’s really a blessing cause with your dad and you were long distance, so that’s a whole different set of challenges glad that she’s there close and with all the craziness of COVID, I’m glad that she’s still doing well.

Susan Stern: 2:03

Thank you.

Rayna Neises: 2:03

Tell us a little bit about some of the things that you’ve felt you did well with your caregiving.

Susan Stern: 2:09

Well, I like this question because so many of us caregivers beat ourselves for what we did wrong. So I like looking at what went well. I think, for me at the beginning, cultivating that sense of trust and respect was really important. Back then, even in 2014, I used the word partner for my mom that’s before I even heard of Teepa Snow talking about using the term Care Partner. I wanted my mom to understand that I wanted her and she wanted to do what she could for herself. And then what she couldn’t do, then I would help her with that. And even now, in the later stages of her dementia when she’s feeling some anxiety I just remind her, I say mom, we’re partners. I got this. Okay. I’m going to help with this we’re together. And there’s a knowing that she has. So I really encourage people to develop that sense of trust from the beginning, especially when there’s those waves of paranoia that happened in dementia.

Rayna Neises: 3:03

That partnering is so important because oftentimes I think as child, adult. We want to come in and take over. We just want to do it all. We want to protect them and do it all. So partnering is a whole different perspective. That’s important.

Susan Stern: 3:19

It is and when you’re the oldest of four kids, you can be a little bossy, which I can be bossy. So I had kind of had to keep that in check a little bit. But yeah, so I’m glad I learned it sooner than later to be able to do that for her. And also what I found too, just getting that legal paperwork. Set up in the beginning. And when I go to support groups, that’s really what everyone tells the new member right away, get your legal paperwork in order right away. Just cause you just don’t know what could happen. So that was helpful. And then being organized with the medical details. So we had so many medical appointments, so having my binder with the different sections, different specialists, and on my phone, I had literally like 15 different specialists. So in that way I could easily access them. So that, that went well. And then keeping my mom as independent, as safe as possible because when she was diagnosed with the dementia, she was recommended to be in assisted living right away

Rayna Neises: 4:19

Mm.

Susan Stern: 4:19

because of how her symptoms were. But my mom was adamant not to do that. So for the next three years, I kept her in independent living and try to keep her as independent as possible. So using different tools, like an electronic medication organizer, having cameras in her apartment and just checking in with staff to see how she’s doing, because my mom wouldn’t know how really well she’s doing, but I could check with staff.

Rayna Neises: 4:48

Yeah, and I do agree. I think independence is dignity and it is really hard. We often say this is the greatest generation and that’s why they have a hard time with it. I often turn it around to people and say, how would you feel,

Susan Stern: 5:02

Right.

Rayna Neises: 5:03

you, but I don’t know that I’m going to age gracefully. I mean, I pray about it, but I just don’t know that I’m going to

Susan Stern: 5:09

Oh,

Rayna Neises: 5:09

with people saying, no, you can’t drive anymore or no, you can’t do this. You know? mean, I think that’s human nature. I don’t know. Obviously the greatest generation has a really strong independence about them, but I think giving up our independence is difficult. So I do agree with you. I think it’s so important to find a way to support them long as you can.

Susan Stern: 5:31

Absolutely because I think that independence gives them that spunkiness too, that keeps them going stronger longer. Because otherwise there could be that learned helplessness that all my daughter will take care of everything. I don’t need to do anything. And then that brain is just not getting stimulated to do things.

Rayna Neises: 5:47

And purpose. I mean, it gives us purpose when we can make our own choices and really engage with life and not just be a bystandard somebody doing everything.

Susan Stern: 6:00

Exactly. Yeah. That sense of purpose. Doesn’t go away. I can continue that. Yeah.

Rayna Neises: 6:05

were some things you did. Well, what would you say was difficult for you?

Susan Stern: 6:08

Top of the list probably would be having good self-care I did not do a great job. Three years into it, I had three cancer scares in four months. Thankfully all the tests and biopsies were negative, but it was my body screaming at me saying you have to take better care of yourself. And it didn’t happen overnight. I was able to get my mom in assisted living. And then at that point I just had a heart to heart and said, I had to insist. I said, I just can’t keep going. And it was just time. So that was helpful. To learn how to take better care of myself. And that’s why mission to tell other caregivers to do that because there’s a cost. The cost is your health and the statistics are scary Rayna, right? As

Rayna Neises: 6:54

Hm.

Susan Stern: 6:55

caregivers may not survive past the one they’re caring for, um,

Rayna Neises: 7:01

different ball of issues right there. So we definitely need to be aware of how important that is. You know, I feel like a broken record when I’m talking about self-care with caregivers, because it feels so impossible, but what would you say is the number one thing that was a shift for you that you never thought you could do, but you did do.

Susan Stern: 7:22

This might sound small, but meditate. I was never someone who meditated and I just made it a daily practice. I used an app just to help me with that. And that helped me to be a little bit less emotionally reactive to things. And it helped me not to be attached to those thoughts, like everything that was coming in, I didn’t have to address and just kind of let things go.

Rayna Neises: 7:46

That’s

Susan Stern: 7:46

So that

Rayna Neises: 7:47

great. suggestion. And I love the apps that are out there. So what else would you do differently?

Susan Stern: 7:52

I would make more memories. Ideally, I

Rayna Neises: 7:55

Um,

Susan Stern: 7:56

have made more memories. I was in that still am, in that sandwich generation of caring for our child at home while caring for my mom. And that was hard to have all the energy to do everything I want it to do. So I wish I would have done a little bit more to make things special for her.

Rayna Neises: 8:16

Yeah, I think it can be difficult because we’re oftentimes focused on what they can’t do. So we miss what they can do. And so. we have a tendency not to bring things together that we can do. For example, one of the things that I love to do whenever I was caring for dad was I would call my sister who had elementary age kids. And I would be like, let’s go bowling. And we would get his sister together and him and my sister and I, and her husband and her two kids. And we would all go bowling. We weren’t pros, my dad bowled when he was younger. And so he was

Susan Stern: 8:49

Um,

Rayna Neises: 8:49

to do that. And so it was something we could all do and laugh and have a good time. I think those are memories that I look back on that I really am thankful that we had a chance to do that. Oftentimes we’re thinking of the things that, oh, well, they can’t do this anymore. My mom used to love movies, but at one point, she just didn’t have the attention span for that. So we didn’t do that anymore but being able to find the things we can do, I think is really important.

Susan Stern: 9:13

Yeah, very true just kind of adapting, adjusting to what level that your loved one is at and being flexible. The other thing I like to share is being the caregiver, who’s always on the go. What I would change to would be to be more relaxed and also more relaxed in my body language and just to be still with my mom, because I would enter in like a tornado with my things to do. And and she could feel that I was

Rayna Neises: 9:40

Um,

Susan Stern: 9:40

energy and it just didn’t feel like you had enough time to do everything. And I feel I’ve been blessed with a do-over now that she’s in memory care, I am, that is what I do now. I’m able to be still with her, hold her hand, listened to her favorite music. And I’m very grateful for that gift. I wish that was something yeah, I would do over again is just have a little bit more calm body language than presence for her. Cause that does resonate with how she’s going to feel too.

Rayna Neises: 10:11

They definitely pick up on our emotions and unless we really tune into it, we don’t even notice that. And I think sometimes when we blow in and do something, that’s because the to-do list is dominating, not the relationship. And so that’s a great point not easy to remember in the thick of it.

Susan Stern: 10:29

Yeah. So true. Yeah.

Rayna Neises: 10:33

So what did you learn about yourself with is your caregiving?

Susan Stern: 10:38

Well I felt like it was a crash course on personal development and faith development. I I learned I’m stronger and more capable than I thought I was. And I didn’t always recognize that again going back to that, to-do list with everything you’re just looking ahead. And it wouldn’t be until other people would point out, look, look at what you’ve done. Look at how much you’ve done for your mom during this time. And I was so grateful for that gift because that empowered me for the next trials that would come along. That okay I can do hard things. I am stronger than I think I am. So that was a good learning experience. Also giving myself permission not to be perfect and to let things go, I feel like I’ve learned, especially in the world of dementia, things do not go as planned

Rayna Neises: 11:26

But.

Susan Stern: 11:27

and it’s you get an exercise of doing that, but that was, I’m a Type A personality. So that’s been a good exercise for me. I’m not the same person I was when I started this journey. That’s a good thing for me. I’m grateful for the gifts and the blessings that have been here provided and also just some self compassion and grace that I’m doing the best I can do. Having that perfectionistic tendency I’d beat myself up for when things didn’t go right. So I’ve learned to have self-compassion let know I’m human and it’s okay to make mistakes. So that’s been good.

Rayna Neises: 12:09

I think because I was so young being just 16, when my mom was diagnosed with the disease, I think I learned so much earlier in life that I really can’t control everything. We want to so desperately, but we don’t get to. It’s just not the way it works. And so this disease definitely Alzheimer’s it, it teaches you that quick, doesn’t it? Because things that you think that you’re doing well, one of the things I always said with my dad is I’m kind of a detective I’m always looking for the clues,

Susan Stern: 12:41

Right.

Rayna Neises: 12:41

what’s triggering, what can I change? What can I do differently to help things go smoothly? And I think that was an asset, if I had been obsessed with the perfectionist part of it, I know I would have gone crazy because you can do the same thing every day it doesn’t work the same way. This process is definitely one that helps us to learn to just let go to be okay with good enough. And I think that is so helpful for people to hear for sure.

Susan Stern: 13:10

Yeah, well, you’ve seen, I’m sure the two circles of what you can control and what you can’t control. And I find when it’s something I can’t control at all. In a weird way, I have peace about that because it’s not something I’m doing wrong and it’s just a call to faith and surrendering. Okay. All right. I can’t do this. So you know, I just pray about that versus it’s the gray area. When it’s some things I can control that it’s like, oh, but I did do it. Did I do it right?

Rayna Neises: 13:40

And I think that like influence event there’s things I can influence, like who is around my dad, who’s helping me care for him. That was something I could influence. I couldn’t

Susan Stern: 13:49

Um,

Rayna Neises: 13:50

exactly the way I wanted it to be necessarily, but I knew I could, choose the people. So having just that right amount of on and letting go at the same time, I think those are the things that can be trickiest because the things we can control, the things we’re doing. We just do them, but those things, which we influence and don’t totally control those are the things that I still try to hold on to sometimes a little too hard. So

Susan Stern: 14:17

For

Rayna Neises: 14:18

it’s definitely a process. Very

Susan Stern: 14:20

And then also I learned I make better choices when I stop and think happens is when I would feel that anxiety I’d feel that sense of urgency to make a decision and make it right now. And when I would do that, those would not always be good choices. So learning

Rayna Neises: 14:37

Yeah.

Susan Stern: 14:38

to stop breath and look a head, as far as what, what are different options? Cause sometimes we feel like there are, there aren’t any choices, but often there could be another choice. And then that can give us peace knowing, okay, this is the one I chose. If that makes sense.

Rayna Neises: 14:56

Yeah. Instead of feeling like you get pushed into a corner and you just have to do what seems to be right in front of you actually seeing all the choices again, realizing their choices. That’s good. Yeah. I think so much of caregiving can be reactive if we aren’t intentional about it

Susan Stern: 15:12

Right.

Rayna Neises: 15:13

making it intentional each choice.

Susan Stern: 15:17

Yeah, definitely.

Rayna Neises: 15:19

So what words of wisdom do you want to pass along to others that are in a caregiving season?

Susan Stern: 15:25

Well to guard and protect your health, prioritize your self-care have good morning and evening routines. They don’t have to be long. Even just having that first five minutes of your morning in a peaceful state of mind can just really set the tone and the pace for the rest of your day. That was helpful and keeping up your own medical appointments because in my eighth year of caregiving journey, I would not want to wait this long to take care of my own health so that’s important. And also having an emotional support system, I think. The biggest challenge maybe and surprises how emotional it’s been as far as being a caregiver.

Rayna Neises: 16:04

A hundred percent.

Susan Stern: 16:05

Yeah. You don’t realize it until you are in that role. And having that support system is such an important priority. So I’ve been blessed with, I get together with another friend who is both parents who are both living, who have Alzheimer’s. So she and I meet and we’ve been meeting for, I’d say five or six years now. And we have been a life line for each other. So that way you’re not feeling alone. So getting that emotional support system. For me, I think ideally if it’s another caregiver, so then that way you know, they understand while still maintaining your other relationships. So being a caregiver, we’re busy. We do have technology. We can do quick texts, even emojis to keep those relationships going for both during, during the caregiving season, after the season is over. So that way you still have that support system and that life to go back. I think that’s important. Managing your stress, which kind of circles back to that self-care because it really does take a toll. And so just learning more about how to manage your stress, whether it’s meditating, deep breathing in there’s so many different out there, and I’m grateful that we’re a time where there’s so many people educating caregivers, because they see the need us. And then lastly, it’d be the micro moments of joy. Again, micro because we’re busy, learning what does recharge us and what brings us joy. And they can be small little things, but I think also feeling that good in our body, because so often, the negative sticks to us a long time, that good it’s like, okay, that was good. Okay. Let’s move on. But really kind of soaking it in and remembering it. And there’ve been times in my mom’s and my caregiving journey where I remember something funny and I hang on to it. I’m like, okay, this is going to get me through a hard day. Remember this Susan, hold on to this because this is good stuff.

Rayna Neises: 18:14

So important. And I love that you’re focusing on the little things, because all of it feels so big. Taking care of myself feels like another full-time job. Really paying attention to the little things that bring us joy that helped to relieve our stress, the little things like keeping our doctors appointments, are all things that are doable. We just have to stay focused on those things at the same time as caring. And I always say, we want to walk our loved one all the way home. But we also want to have a life to walk back into, to re-engage those relationships and to get back into a place where we still have a life that we love and not just we’ve given it all up and now there’s nothing left because our caregiving seasons over such wisdom in that. Well, Susan has been wonderful to have you here today. Thank you so much for joining me, tell our audience how they can get in touch with you.

Susan Stern: 19:07

thank you, Rayna. You can go to my website www.SpringtoLifeCoaching.com and I have my contact information there. I also have free resource of Self-care Recharge Ideas. It’s a list of different activities that you can do in different increments. So for 5 minutes, at a time, 15, 30 minutes an hour, taking that advantage and being intentional about your self-care.

Rayna Neises: 19:30

That’s great. I love to have resources with things that we just never think of as being self-care I think that’s one of the things that we have these certain things in mind, and we don’t realize some of the things like meditating or just some of the five minute things really are taking care of ourselves. So that’s a great resource you’ll want to pick up and listeners to just make sure that you take advantage of the great wisdom that Susan shared finding a way to care for yourself and be able to care for your loved one with no regrets. Thank you for joining me today. A Season of Caring Podcast has been brought to you by a Content Magazine, a quarterly electronic magazine designed to help you find God in your caregiving season. It’s filled with stories from other caregivers, practical tips, prayers, inspiration, and brain trainers just for fun coming in 2023, visit ASeasonofCaring.com/content-magazine to learn more. And as always, a season of caring podcast has been created for the encouragement of family caregivers. If you have financial, legal, or medical questions, be sure to contact your local professionals. And take heart in your season of caring.