Rayna Neises: Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. I’m your host Rayna Neises and today I have Aly Neises here with me to recap our conversation with Deb about marriage and having that support partner in our caregiving season. Hi Aly How are you doing today?

Aly Neises: I’m good.

We talked with Deb this last week and she was talking   about her two seasons that she went through with her parents. She had her dad that was more hands off caregiving. They did a lot of traveling back and forth. And how her husband was helpful during that time. But she said that the most appartant season that she’s in and has been in recently has been with her mom and how that was so much different, especially when she talked about the surgery that her mom had and how she had to stay with her for five weeks.

Sounds like that was very trying for her and some of the things she talked about that I feel like would be important for our listeners to kind of glean from that, were how supportive, having a spouse can be there, your partner in life. And so that includes in caregiving in that season. She said she wished that he was around more, that she had that more of that support that he would have come to see her and just spend time with her more.

She talked about that 20/20 hindsight is always something we talk about. But I did find it interesting that one of the things that she wished she would have had and where she would have done was like reached out for professional help even.  We talk about taking breaks,  caregivers that get paid to do this, like myself, for a living,  I’m a nurse.  I worked during the day and then I don’t, I’m not supposed to anyway, take care of people after hours. I go home and recoup. That’s not something you get when you’re doing 24 seven caregiving. So I mean, I think it was important that she really iterated that we do need to take breaks, but also we probably need to make those breaks a big priority with our spouse as well.

I know that you’ve been through several seasons of caregiving, most recently with your dad. What are some of your tips and tricks that were helpful during your season and with you and your marriage?

Rayna Neises: [00:02:38] My season was four and a half years it was definitely a long stretch of time and I found it to be really important to make sure that from the out of the gate I had his support and I knew how he felt about me being there and being away from home to be able to be there with my dad.

In fact, it was my husband who said to me if you need to move here to take care of your dad, you need to do that. And I would never really even thought of it to that extreme I think if he hadn’t initiated that conversation for us to then turn around and have this back and forth, okay, what do you really think?  How would you really feel? How much is too much? How would you handle me not being home? and we ended up settling on that three and a half days a week that I was there for almost three years, and then drops back to every other week. for that three and a half day period. One of the things that we did frequently is just have those check-ins with, how’s it going?

[00:03:43] How are you feeling about this?  what do I need? What am I getting in this relationship? What am I missing in our relationship? And one of the things that I realized was at the six month points, okay. We had a certain schedule where I was teaching still at that point, and I would leave on Thursday evening and drive up to Kansas City and stay with dad until Sunday at three o’clock.

[00:04:07] And then I had that four hour drive home, and then I was teaching, you know, Monday through Thursday. So there was just a lot of responsibilities and it didn’t give me a lot of time with my husband. If you follow me at all, you know, I call him farmer because he is a farmer. And so farmers work a lot.

And we were coming into the summer and I knew that it was going to be, just really even busier than the spring had been. And so I was really missing our Sunday time. We’re a family that goes to church we spend that Sunday together. And, because I was with my dad, I wasn’t getting that time with my husband.

That was one of the things I said to my sister, I really think I need this change in the schedule. And so I started leaving earlier on Thursday, and spending the evening with my dad on Thursday, not just the night, and then leaving, getting up at six o’clock in the morning on Sunday morning to be able to make the drive back so we would have. Most of the day, Sunday together. Making that priority, what we needed to feed each other and, our relationship was definitely so important.

I found an interesting quote in The Caring Season by Jane Daley. She said, “When caring for an aging loved one, the question is often asked, whose needs come first? This is my question. Should my mom come first since she is unable to care for herself or should Mike, [her husband] as my life partner comes first, the relationship between husband and wife trumps everything else. Says Dr. Charles Schmidt, who with his wife Elizabeth, authored Golden Anniversaries, The Seven Secrets of Successful Marriage. If they continue to strengthen their relationship with each other. Then their marriage will survive the enormous challenges associated with caring for aging parents.”

I love that quote because Dr. Schmidt acknowledges two important things. Number one, a relationship has to be strong in a marriage in order to survive a caring season because it is tough marriage isn’t easy. On a daily basis anyway and then when you add the challenges of those needs of your loved one, it becomes that much more difficult. And I really think acknowledging that is one thing that really can put us on the right track. if making sure that we’re feeding our relationship, strengthening our relationship, and just keeping it on the radar, I mean, things can get so busy that we just totally forget, to pay attention to that relationship. Just assume it’s going to be fine and we all know that’s the beginning of trouble.

Aly Neises:  Yeah. I think you’re hitting the nail on the head, just being purposeful. And I think the great part too is that you guys had that conversation of what you needed before you even looked at how caregiving was going to be possible.

Like what does it look like if I’m not here? You know? And to know that he was willing to let you move hours away if that was best for your dad says a lot, not only about him as the man you’re married, but also as your guys’s relationship. He knew that. That marriage wasn’t going to change. Even if you didn’t live in the same house for a short period.

You know, he was okay with that. He was willing to make that sacrifice, but I think to know that he was willing to do that makes it easier to do what you had to do to take care of your dad too.

Rayna Neises: [00:07:39] It did. He was always in my corner. I never had any doubts about that he wasn’t there kind of like Deb talked about with her husband. I really wished he would visit a little more often, but because of his job and because my stay with my dad was so long, it was difficult for him to be able to accompany me up there to stay with dad. It also became a kind of funny because. He didn’t know the routine when he was there, so was kind of in the way sometimes.

My sister is married as well and my sister was the other primary caregiver with my dad and you know, watching her and her husband, they, were such a great team as well. Her husband was very hands on with my dad.

In fact, one day a week, he picked him up from the day stay and he took him to the grocery store and they ran those little errands together. And you know, there were definitely adventures when you’re taking care of someone with Alzheimer’s as they progress in their disease, you know, we. had issues with bathrooms and stories like that that he was a great sport with, but I really know that dad just adored him and John was amazing with him.

And, they always went to the same grocery store,  on Fridays after John picked him up after work and after dad passed away, the people at the grocery store notice that dad wasn’t there and they ask about him. And when John shared with him that my dad had passed, it was so sweet. They actually got flowers, the employees purchased some flowers to send home for my sister. just to acknowledge that loss. And so you can tell that strangers had that much attachment to dad and John together. It just really made me know what a great team they were. And it was really fun to see that piece of it too.

And his support of picking up, you know, taking care of the kids when Robin was taking care of my dad, as well as we had a sophomore, junior, senior in our home, in high school as well during the time that I was traveling.

You know, having that shared balance with, your spouse, it just is irreplaceable. the support that they give you from just having someone to talk to and encourage you. Coming in, you know, when it’s been a rough weekend. So a hug, really made all the difference.

Aly Neises: [00:10:00] Yeah. I think. It’s important for our caregivers and our listeners to understand, we’ve told them many a time, Deb talked about and going on dates and creating time together. And I know you’ve talked about that too, when you had time home, you would do things purposely together.  I think those are wonderful, but it’s also important to remember that they don’t have to meet  big chunks of time either, you know, a text message or a phone call. You know, like, I know even when I’m having a bad day, like a five minute conversation with my husband is enough for us to reconnect and for me to feel better.

Even to Talk about like with your spouse, the expectations you have during the season of caregiving, and talk about how those will change throughout that, but also talking about what is important. Like, Hey, I just need a five minute conversation today. Can we talk at nine o’clock? Or hey, just thinking about you.  Text message can’t wait to talk later. Like I think those little check-ins make us feel more connected. and not so lost in the everyday mundane caregiving cycle that sometimes we get into in that season.

Rayna Neises: [00:11:16] Caregiving can feel really isolating, especially when the person you’re caring for can’t, you know, carry on the conversation. Or, they just are feeling so rotten that they really don’t want to, you know, it can just be really isolating and so that spouse can be such an important piece of helping you not feel isolated.

I agree. You know, farmer and I had a conversation every night, even if it was just, you know, got to run. I love you. I’ll talk to you tomorrow.  Sometimes there was something happening that we really didn’t get along conversation or he was failing hay and. He couldn’t hear me very well, or whatever it was.  We just checked in every night and I looked forward to that. I kind of knew what time it was. He called me at 11 o’clock every night. So it was that opportunity to just check in and see how the day was going and and hear if there was anything exciting or anything boring that I needed to know about.

And just that I love you. And, and knowing that we were there for each other and that consistency made such a big difference that as the season went on for such a long time, we still knew, that we loved each other and that we were there to support each other. And I’ll tell you, some of the biggest bits of wisdom came from farmers simple little statements here and there.

One story I share frequently when I do speaking is about, how difficult our evening routine was with my dad. I put him to bed three nights a week, and it seemed like there was always one night that he just wasn’t cooperative and he was incontinent, especially at night.

And so it was so important that we got his daily clothes off and, and got a special, brief on him at night and got him into his jammies and things, and that just seemed to be one night a week. Usually he would just not want to do that. And so it would turn into this, Hey dad, can you take off your pants?  Sure. And then he wouldn’t do it. Hey dad, can you take off your pants? Sure. And then he wouldn’t do it.  It could go on for an hour. So an hour and a half of trying to coach him into getting his, his clothes changed so he could go to bed. And, you know, I tried all kinds of tricks and there were times things worked and there were times things didn’t work.

But, we just got to a point where he was getting more combative about it and just. Not kind, which was hard. It was heartbreaking for me. And so we had a rough Saturday night and I was home Sunday, and farmer and I were talking about it and he said to me, what would happen if you just hugged him and told him that you loved him?

I’m like are you serious? He would hit me. That’s what would happen. He would, he would, it would not work. He would be mad. He would not like me touching him, and so I just kind of blew him off in the moment. But the next week there I was again. I always stood in the doorway between the bathroom and the bedroom and would ask the question over and over again.

We’d been there about 20 minutes whenever I had farmer’s voice in my head going, what if you said you loved him? And so I thought, okay, what do I have to lose?  I stepped into the bathroom and I wrapped my arms around my dad and I said, “Dad, I love you.” He was really stiff and he had his fist clenched and just kind of stood there.

And I rubbed him on his back and I just told him, “Daddy, I love you. I’m here to help you. It’s okay, you’re safe. I just want to help.” And I just held him and, and just talk to him and just told him I loved him. And he eventually relaxed into the hug and hugged me back, and I just held him and said, “I love you daddy. I’m just here to help you. Okay? Everything’s okay.” And I dropped my arms and I stepped back and he lifted his head. He looked me in the eyes and he said, what do you need me to do? Like I said, I just need you to take off your pants, which sounds like such a funny thing to say. But he said, okay, and this time you did.

And he got changed into his jammies and I tucked him into bed and gave him a kiss goodnight. And it just changed the whole night. And each time I found him getting combative or frustrated, from that point on, I was able to just step in and put that gentle arm on, hand on his arm or give him a hug and just tell him, I love you and I’m here to help you.  And we’re okay. And it just made him so much more cooperative and the number of times that.

That little little tidbit of wisdom just totally changed how our whole weekend went sometimes. And so I’m just so thankful to have that support and to have been able to have that conversation even in the moment when I didn’t want to hear it. I did hear it later and it really did make a big impact.

I just think having those. Family members that support us and come alongside of us. There’s just no replacement for that. And a relationship like a spouse can just make a world of difference.

Aly Neises:  Yeah, no, I think you bring up a great point. We all function differently we all have our strengths and our weaknesses and having a different perspective, a different viewpoint somebody that’s not doing this day in and day out and kinda.  Just the, not having the stamina to keep going. Like just to see this from a different view and be like, Hey, have you tried it this way? I think a spouse is a great way to do that, but there’s other people, you can also do that with other family members, other professionals, but you need to do all of those things frequently.

Sounds like that was a great, just a small change that not only changed your guys’s routine and how your night went, but it sounds like it created some great memories for you as well. Tender moments, things that you can look back on. And I remember those things fondly, even though he’s no longer here.

Rayna Neises:  I was so thankful for that because it did. It made a big change. It helped me to see that sometimes that aggression and that frustration was actually coming from confusion and not really understanding everything. And in the thick of it, I knew that he wasn’t understanding it, but I didn’t know how else to get him to understand it.

But by reaching out in love and just comforting him, it like let all of the stress go. So then he was able to reset and think differently and think more clearly.  It made such a big difference. And you know, just having. My husband to be able to give me that. And you know, in the moment, I can’t say I received it real well because it had been a rough weekend and I wasn’t asking him to solve my problem.

So it’s important in your, in those relationships, not to be as problem solver always, but it’s also important to, to receive the wisdom when it’s given. In the moment it was exactly what I needed later. Right then I didn’t necessarily appreciate it as much as I did when it worked.

Aly Neises: Understandable, and if it would never worked you might still not have perceived it. Right.  So I mean, I get that 100%. my husband and I, we’re not taking care of other people. But one of the things we have started to do as a marriage, as a relationship to grow and nurture and put each other first, is that before we go to bed, every night we talk about the peak and the pit of our day.

So what were the good things of today and what was the bad things? And sometimes I’ll lead that off with him.  I had a bad point in my day and I don’t need you to fix it. I just need you to hear me out.

It may just be my coffee tasted bad today, or the sun wasn’t shining, but or it’s like really tough stuff that I’m just struggling with.  But that has helped us reconnect a little bit, and try to put our marriage first. And it’s just a little tip and trick that maybe some of our caregivers and our listeners can do. Like when you do those nightly check-ins, like. Just to kind of get to more of the meat of the problem. Even if you just have that short minute like, this is what’s really bothering me today.

But this was great about today, and I do think we’ve talked about this before about changing our perspective. We can talk about the good things too. It’s going to help us to be able to go and continue to walk on this long journey, because sometimes we don’t know how long this journey is going to take, and that duration can take some time.  So the little behavior change and the little bit of glimmer of hope or good thing that happened today may be enough to make tomorrow a little more bearable.

Rayna Neises: I agree. And I think it’s so important to both see the good and the bad because sometimes when we’ve been doing caregiving and we are in the trenches of it. We don’t want it solved, so we don’t want to talk about it either. We’ve just been in the thick of it, and so I, I don’t want to go there again.  It’s just too much right now. And so we sometimes then don’t share that with our spouse and they don’t know. All they’re hearing is maybe being snippy or, or they see you exhausted or whatever they’re seeing the repercussions of what you’re going through, but they don’t even really know what you’re going through because you don’t always share it.

So I love that a peak which is looking for the good no matter what it is. At the same time, acknowledging the. With the good comes the bad, and with the bad comes the good. It’s almost like a coin. We’ve got two sides and learning to see both sides really can help through the thick and the thin of caregiving.

Making that connection because, you know, one of the things, as I was gone for four and a half years, I missed things. And so having that time to be able to hear what’s been going on at the farm when I’m not there. Would have been great to hear the good and the bad of that as well, just because it would have maybe made him think to tell me something that happened that he’s not thinking about whenever we’re talking or if he’s bailing hay and his thought really isn’t out there at all.  So, you know, there were just things that I missed that it would have been interesting to see what more of that I would’ve heard about. I love that.

Aly Neises: Yeah and I think you also bring up a great point about, our loved ones, especially our spouses, are some of times the people that we know can handle the worst parts of us. I mean, that’s why we’re in a marriage. it’s that give and take. And so sometimes my husband can probably attest to this, like every other spouse out there, he’s sometimes the one that I’m the snippy  with, and he’s sometimes the one that I yell at and he gets the brunt end of the stick sometimes.

I’ve learned in our relationship not only how to handle that, but he’s also learned. To tell me like, Hey, you’re not right. What’s going on? Let’s talk about this. You know, what can I do to help you? And I think, you know, sharing those bad things too, like you said, acknowledging the bad things so that they can help share that load emotionally and spiritually is also going to help. Maybe they can’t be there physically, like farmer couldn’t, he couldn’t be there his job is here. And so, for him to just, Hey, I got you, what can I do to help support you, I think is something that’s beneficial. I do think too,  we’re talking about a season of Caregiving for our loved ones. You know, we have to have a marriage to come back to, and if we don’t feed that and nurture it and water it every day, like a plant  it’s not going to survive. It’s definitely not going to survive this. We’re not treating it in a healthy way and not making it a priority. So

Rayna Neises:  For sure. All relationships take time and investment, and in a caregiving season you are exhausted, and you don’t always think about it that’s why it has to be top priority. That’s why the quote that we pulled out from The Caregiving Season about making it the number one priority, has to happen because if you don’t. When that season is over, the marriage is going to be gone as well. And I can’t imagine how devastating that would have been. It was so difficult to lose my dad to have lost that support of my husband as well. I can’t even imagine. I’m so thankful that we were intentional, and we were supportive and we did take the time. To invest in each other and to laugh and to, okay, you know, we got away on vacation. They might’ve been shorter then other vacations. But we did do things together so that we could have our own memories and our own, things to laugh about and to enjoy with each other as well as with my dad.

We’ve hit some really good points today on marriage and how important it is to keep it a priority in this caregiving season. We talk frequently about the fact that adding one more thing to the list feels extremely overwhelming, but I want to encourage you as a listener to really think about what you are doing to support your spouse and to grow your marriage in this season because it will be an investment that will be well worth it without a doubt.

Aly Neises:  I agree completely.

Rayna Neises: Thank you for joining us today on A Season of Caring Podcast. We’re so excited to have you listening with us. We’d love to hear your comments, so feel free to comment on our website.

Just to reminder, this podcast is intended to encourage family caregivers. If you have medical, legal, or financial questions, consult your local professionals.

Thanks again. We’ll see you next time.