[00:00:00] Rayna Neises: Welcome. This is Rayna Neises with the Season of Caring Podcast, where we share stories of hope for family caregivers, breaking through the busyness and loneliness of life to see God, even in this season of caring. Today I’m excited to introduce you to Liuda. Liuda is a retired pharmacist who has worked in the pharmaceutical industry for over 33 years.

[00:00:20] She has a senior golden retriever rescue who is afraid of everything. And she spends most of her time now trying to support other caregivers. And helping her dog feel safe and secure. Liuda is a volunteer facilitator for the Nourish for Caregivers group. And I am excited to be able to have her share with us a little bit about her caregiving season.

[00:00:42] Welcome Liuda.

[00:00:43] Liuda: Thank you so much, Rayna It’s great to be here with you.

[00:00:47] Rayna Neises: So you’ve had a couple of different journeys and in the process of a little different one with caregiving, tell us a little bit about your caregiving.

[00:00:54] Liuda: So, I live outside of Philadelphia, and I grew up, and my parents and my brother lived in Illinois. So, being a pharmacist, my parents always looked to me for medical advice, which sometimes I knew about what they wanted, and sometimes I didn’t. When my parents started getting sick, I would travel back and forth and cared a little bit for my father long distance.

[00:01:19] He passed in September of 2019. And after he was gone, mama lived by herself for probably much longer than she should have. She exhibited signs of dementia and I. I think my father covered for her, hide it , overcompensated probably. And once he was gone, it came out full force. So I would go back and forth spending three weeks here in Pennsylvania, then two weeks in Illinois for almost two years.

[00:01:51] She fell in the summer of 2020, and it became very clear that she had had a stroke. And I took her to the hospital and they did finally diagnose her with vascular dementia. And after that hospitalization, we immediately put her in a memory care facility. And so that was during the wonderful thing called COVID.

[00:02:16] So again, I would travel back and forth, and the visiting hours were only one hour a day, only outside, and we were very grateful this all happened during the summer, so it was good weather, and then once it got cold visiting was just in the front vestibule of the facility. And mama passed in July of 21.

[00:02:40] That was probably the, the biggest caregiving journey I was on, but I do have a brother and he had a motorcycle accident when he was a teenager and had a closed head injury, brain trauma. He did very well for the longest time, but my parents did look after him. He lived on his own. Once they were gone though, it became clear that he was not able to take care of himself.

[00:03:09] And I finally had that difficult discussion of, is it that you won’t do? All of these things that an adult should be doing or that you can’t? And he admitted that he can’t and so I kind of took over and continue to long distance care give for him. He lives in Illinois. He’s lived there all his life and It’s easier for me to do it long distance than it is in person. So that’s my journey.

[00:03:38] Rayna Neises: Yeah, I think you share what so many people share whenever one parent passes and the one that’s left, how things change so significantly, and I think so many times it does both. The loss of the loved one, the grief impacts the brain and changes things, but I think also because that team has been so strong for so long, there’s just a lot we didn’t even know was going on with with the one that’s left. ,

[00:04:07] Liuda: Yes. I think and, and timing is everything because they celebrated their 64th wedding anniversary at the beginning of September. And my father died the end of September that year. So I was home for their anniversary and then I came back when he fell and had had the episode. And of course when he passed and, Mama just couldn’t cope. They had been together for so long and she died a year later, so they’re together again.

[00:04:40] Rayna Neises: Which is awesome to be able to know that and have that assurance. It’s just, it’s hard. It’s hard to lose your parents and it’s hard to lose them close together like that. Oftentimes people mention, they don’t feel like they even got to grieve the first one before the second one is gone. Because it is such a traumatic change in life adjusting to life without them being a part of it. And then it sounds like there was probably more support for your brother going on than you were aware of even initially too.

[00:05:10] Liuda: exactly right. I mean, I, I know that he lived on his own. He had his own apartment. But my parents took him grocery shopping every week and, he would always spend Sundays with them. They went to church together. Then he’d spend the day. And I guess I just didn’t realize how much support they gave him and, cleaning out their house after they both passed it was eye opening all of the documents and, and things they saved that I never knew about.

[00:05:39] So it was, it was a learning experience.

[00:05:45] Rayna Neises: It is interesting how caregiving challenges us in so many ways. And I think the rhythm of life, we all get those rhythms of how we work and interact together. And they had their rhythm, the three of them. And then it wasn’t the three of them anymore. So the necessity for you to step in and try to help and support became something that was surprising as well as probably a little more challenging than you expected.

[00:06:11] Liuda: That’s, that’s very true. Yes.

[00:06:14] Rayna Neises: So do you have a favorite caregiving story that you’d like to share with us?

[00:06:18] Liuda: So, I knew absolutely nothing about dementia when Mama was diagnosed. My aunt has dementia and so I had, I had seen what she had gone through or continues to go through. But the most surprising thing to me was that after I took Mama to the hospital and I got her into the memory care facility, She had no idea who I was.

[00:06:42] She knew that I was somebody that loved her but she had no idea that I was her daughter. And it was very hard because I like I said, I would go visit her every day during the two weeks that I was there and she just had no idea. She fell in December the year that she was in the memory care facility and I was with her in the hospital and one evening she just looked at me and she said, I know who you are.

[00:07:14] I know you’re my daughter. I know you love me and I love you. And it was the, the most clear, conscious real loving thing she had said in well over six months. And, you know, so we, we talked and I hugged her and it was a beautiful, beautiful time. And as we continued to talk, I saw her slipping back into that dementia state of.

[00:07:52] You know, not knowing where she was not knowing who I was, but I will never forget that. And about seven months later, she passed. And there were times there were very hard times during those next seven months. And I would remember that evening in December where she knew exactly who I was. So that You know, when you think you can’t go on and you think that, they’re never going to know who I am and they, why am I visiting?

[00:08:19] Why am I talking? They know there was, they don’t always show you they know, but she showed me that December that she knew and that that memory I will treasure forever.

[00:08:33] Rayna Neises: Such ann important thing to have because like you said the tough times you had that to hold on to. And I know, you know, my story as well is losing both of my parents with Alzheimer’s. And it’s hard because people will say, well, do they know who you are? And you’re like, no, but they also didn’t think I was the nurse.

[00:08:53] You know what I mean? They also there was a connection there. There was a deep connection with them that even though they didn’t think they’d been married or had children or any of those things, there was still that connection, but those moments of clarity are so, so precious. And that’s one of the things that I look back on and just am so thankful that I had the time because if I hadn’t been there, those moments.

[00:09:17] I wouldn’t have had those moments. And so I love that. I love that she was able to give that to you, that encouragement. And like you said, just to have that cherished memory to hang on to during the really rough times. And then now as, as she’s gone now, so just being able to cherish those memories, I think it can be so difficult with Alzheimer’s or dementia patients, because they can’t give you that affirmation of what you’re doing and they can’t say, thank you. But you have to look for those little things. There are things that they do.

[00:09:47] Liuda: You learn along the way as you know, I’ve, I’ve interacted more with, with caregivers that have a dementia patient and you know, the courses and the, and the books and all of the resources they say you should always introduce yourself. Every time I saw mama, I’d say, “hi, mama. But I would never say, it’s Liuda, it’s your daughter.

[00:10:09] And I think back because of course she knows who else would be calling her mama. But the, the things that you learn along the way, and if I could go back and say, you know, it’s Liuda, it’s your daughter every single time, maybe that would have helped. Maybe it wouldn’t have, but you learn from people.

[00:10:30] Rayna Neises: Yeah. Yeah. And I think it’s funny too, because we don’t remember everyone’s name. Now we remember those people that are important and especially the ones we name. But it’s not unusual to forget a name. So I do think it can be such a comforting thing for them to hear who you are and To see, I mean, is there recognition in that or not?

[00:10:50] The caregivers used to say to us, you call your dad Bob, and I said, well, he responds to Bob. But there were times in tender moments where I called him dad and he responded to that too. But most of the time, if he was across the room and I said dad, he didn’t recognize that. So he would respond to Bob. So we called him Bob most of the time, but it is interesting how you have to kind of navigate that and find that.

[00:11:14] And I think those heartwarming moments are the times where, the thoughts are getting through when they recognize, but I think giving them the opportunity to recognize your name can definitely be really helpful.

[00:11:25] So what would be one thing that you would say surprised you most about being in a caregiving role?

[00:11:35] Liuda: I think it’s that It is all consuming. I mean, I was very fortunate that I was retired when I was doing all of this because I cannot imagine having the energy to have a day job, so to speak, or taking care of a family and caregiving all at the same time. And the caregivers I’ve met that that are able to do that.

[00:12:03] I’m just in awe of them of how they balance balance the time to do that Because it is all consuming when I was in Illinois I only had an hour every day with her and it was never enough. When I would leave there and leave the facility and then go to her home and try to start cleaning out and there was never enough time and there were calls from the facility of this has happened, that has happened.

[00:12:34] And then when I would come home and I wasn’t there for three weeks, I was thinking about her constantly and all I wanted to do was go back. But I had stuff that had to get done at home as well. So the all consuming and it takes so much time and energy and thought because even when you’re not physically there, you’re thinking about it, you’re responsible, you’ve got to take care of everything.

[00:13:05] And I think the thing that surprised me the most was how much time and energy it actually takes.

[00:13:12] Rayna Neises: It is shocking and it is crazy. I was just talking to, I can’t even remember who it was, a client that was talking about the fact that they made a phone call just to have a question or to address an issue on insurance. And it was an hour or 90 minute phone call just to be able to get something straightened out.

[00:13:31] I think it was a question on whether or not there was a secondary insurance when there was a primary insurance and there’s only a primary, there is not even a secondary, but they we’re having to go through all of these different departments and all these different people. It is crazy how time consuming it can be to do just the simpliest things and I think that’s one of the simplest things to help to support and to take care of, especially when you’re dealing with someone else’s money or all of the HIPAA laws and all of those things.

[00:13:57] So it, it is amazing how much that can take. I do think one of the most important things as a caregiver is learning how to do that juggle of not allowing it to be the only thing you think about. And it definitely is challenging to learn how to do that. I’m not sure if it’s because I was so young when my mom was diagnosed.

[00:14:17] That I kind of learned to compartmentalize a little more, but I definitely made a conscious effort. When I was taking care of my dad, 220 miles wasn’t as far as what you were, but for me, it wasn’t like if he fell there was anything I could do. If I was at home on the farm, I wasn’t the one who could fix it.

[00:14:36] And so I had to really consciously say, I often thought to myself as I was driving out of the driveway, I would just be like, okay, Lord, tag, you’re it. You know, I’m tagging out because I’m not here. So I need to trust the people who are and to let it go because worrying about it is not going to change it and it won’t get me here any faster.

[00:14:57] So I think it is a process of learning what works for you to be able to not let it become all consuming because it definitely can feel that way and can become that. If we don’t find ways to be able to protect our own identity and our own mental health. As well as physical health.

[00:15:15] Liuda: I think the one thing that helped me was to have that routine. I knew I was there for two weeks. I knew I’d be home for three weeks. I knew I’d be back. All of the plans were made for the next trip before I left for the first one. So to have that routine and knowing that, you know, for two weeks I’m going to be here, I’m going to do everything I possibly can.

[00:15:38] And then I love what you said, tag Lord, you’re it. While I’m three weeks back in Pennsylvania. So. Having a routine helped.

[00:15:47] Rayna Neises: I agree. I’m definitely a rhythm routine person, and it’s been interesting because during my caregiving season, I had to be really stringent in that. And now that I’m not, I’m not near as stringent and I don’t accomplish very much. You know, I was, I was working out regularly. I was doing a lot more because I just had that routine.

[00:16:05] It was really easy now that things are a little more ebb and flow. I’m probably not as disciplined in some things as I was before, but I think that’s a good point. Finding the routine that works and really protecting that, you were going to be there for two weeks there. It didn’t matter what else was going on.

[00:16:21] That was what was going to happen. And so that gives you both the confidence that you’re going back and the ability to just say, no, I can’t do something else whenever you were going to be gone. So I think that’s really helpful.

[00:16:33] Share with us how God showed up for you in your caregiving season. Wow.

[00:16:39] Liuda: two examples, one with mama and one with my brother. The time that I went to Illinois and she had fallen out of bed twice, and I knew that I had to take her to the hospital. It was, it was a Sunday morning and it was COVID. So there was mass in the parking lot. So we went to mass in the parking lot. And then we stopped at the cemetery to see Dad. And then I started driving to the hospital, which is the opposite direction of the house. And she was very angry and you know, we got her into the hospital and they put me in the waiting room for a while. And then I went back to see her and she was absolutely furious with me.

[00:17:22] And The Holy Spirit, that’s the only way I can describe it, said there’s absolutely nothing you can say. So everything she said, I would recite the Hail Mary prayer. And she would look at me like, wait, you haven’t my question, what are you doing? And everything she said, when she stopped talking, I would pray Hail Mary.

[00:17:46] Because my mother had a huge devotion to our Blessed Mother. And Eventually, she calmed down. It took, I’m guessing between 15 and 20 prayers, but eventually calmed down and eventually she stopped yelling It was very hard for me and yet it was very easy for me because I didn’t have to think of anything to answer her or counter her argument or anything. I could just pray. So that was the first time in this dementia journey that it was. It has to be the Lord. It has to be God because I’ve got nothing to offer. And, you know, the, the, the memorized Hail Mary prayer was going to get through to her where I absolutely could not.

[00:18:39] Rayna Neises: That’s so beautiful. And I love that the Lord laid it on your heart and that you were faithful to hear that because so many times, especially in those crisis situations, we’re trying to be logical. We’re trying to talk them out of their feelings. We’re trying to convince them that everything’s going to be okay.

[00:18:57] We’re trying to offer something that really we don’t have to give them. And I love that that prayer was not only calming for you because it just reminded you again that this isn’t about me. I can’t fix this. But it also then brought her to that same place and brought peace for both of you. That’s

[00:19:14] Liuda: Yeah, it, it, it worked. It worked. By, by the time that had happened, I had, joined nourish for caregivers. And I had been part of the House Calls. And I remember before I went into her room, sitting in the waiting room, talking to one of the one of the coordinators saying Amy, she’s not going to get better, is she?

[00:19:36] And Amy was like, no, she’s not. So you’ve got, you’ve got to realize this. So once I started, that was my first story. Once I started caring for my brother, I was extremely frustrated and extremely angry. And it was through one of those calls, and I will never forget, you Rayna telling me, Liuda, pray first. Before you pick up the phone to talk to your brother before you launch into the next thing you have to do, pray first, and it really has taught me.

[00:20:11] It doesn’t matter what the prayer is. A lot of times. It’s just Lord help me. Lord, help me speak to him, you know, and, and my, my grandparents died years ago. And mama would always say she would pray to her mother for intercession. And I would pray to my dad. It’s like, just, just. You know, reach down and slap some sense into my brother I’m trying to help and pray first. So I think those are the, I mean, God is with me every day. I couldn’t do this without him. But those are the two examples I have of the lightning bolt, if you will, of God telling me, I’m here, you’ve got to trust me, and it’s going to be okay.

[00:20:56] Rayna Neises: It’s not going to be what you think it’s going to be, but it’s going to be okay.

[00:20:59] Liuda: Yeah, right.

[00:21:01] Rayna Neises: Yeah.

[00:21:02] it is. I think that’s, there’s so much power in prayer and I don’t know why we don’t go there first naturally, but we have a tendency to just rely on ourselves and logic and all of those things. But learning to, between whatever the action is and our reaction, remembering to just stop and ask for help.

[00:21:20] Like you said, as simple as Lord help. I don’t know what to do. I don’t know what to say, can be so powerful. So thanks for that reminder, Liuda.

[00:21:27] Aren’t you enjoying my conversation with Liuda. It is full of such great wisdom and tips on caregiving. Now, let’s take a minute here to thank Nourish for Caregivers and the Caregivers Companion, a Christ Center Journal to Nourish your Soul for sponsoring this episode of A Season of Caring Podcast. The Caregiver’s Companion is a beautiful book.

[00:21:51] I highly recommend it. It’s filled with so many thought provoking questions and beautiful prayers. Not to mention the gorgeous watercolor pictures throughout the book. It’s just filled with encouragement for your soul. Exactly what it was made to do. It’s written by two amazing women, the founders of Nourish for Caregivers and nonprofit organization that seeks to improve the health and spiritual wellbeing of caregivers. I volunteer to facilitate the Nourish for Caregivers. Tuesday morning House Calls meeting at 10:00 AM. Central time. It’s a support group. Filled with scripture, prayer and lots of love. Join us. You can visit nurse for caregivers.com to find the link and sign up to be a part. Also be sure to order your edition of The Caregivers Companion. It’s available at www.AveMariaPress.com. I know when you get it, you’re going to find yourself thinking it is way too beautiful to write in, but go for it. It is definitely beautiful. It’s filled with guided journal entries. It combines prayers, meditation, reflection questions, quotes and plenty of space for you to record your very own personal thoughts throughout this caregiving journey.

[00:23:05] Now let’s go ahead and hop back into our conversation with Liuda.

[00:23:10] What would be one thing that helps you to live content, love well, and care without regrets?

[00:23:21] Liuda: I think the knowledge that God is with me and I am not in this alone. I lost my God son when he was very, very small. I was 20 months old and I was talking to his mother and I said, how on earth are we going to get through this? And she said, with faith, we didn’t have faith. We couldn’t possibly get through this. And I, I look around at what What my parents have been through what my brother has been through how I’ve walked along the way and I know I’ve never walked alone God has been there and one of the I don’t know where I read it that when someone dies, and I was very blessed to be able to walk both dad and mama to heaven’s gate. I was there when they passed

[00:24:12] But I read that when someone dies, you know, there’s so much to do. You’ve got to call in the nurse. You’ve got to deal with the funeral director, all of that. And nothing has to happen right away. You can sit with that person for as long as you want. And I remembered that when Mama passed and she passed at 4. 10 in the morning. And I remember, you know, you watch all these medical shows and I said, time of death, 4. 10. And I think it was around 4. 30 that I finally stepped out of her room and I told the aide that she had passed and the nurse came in. And he pronounced her dead at 435. I said, Oh no, she passed at 410. And I pronounced her at 410. And he said, we can’t do that. But it was, you know, she died holding dad’s rosary in her hand and me holding her hand. And God was with us every step of the way. So I don’t have any regrets because. My parents raised me with faith, and I know that they would be okay with everything that happened because I prayed first, because God was with us, because I remembered the rosary beads, I remembered, to get the priest to come, to give last rites, to Everything was centered on God, and that’s what gets you through it.

[00:25:41] That’s what gets you through the best times and the worst times.

[00:25:45] Rayna Neises: It is, it is holding on to that faith sometimes can be hard because there is so much hurt and we want it to be different than it is, but constantly just reminding yourself of that faith. And like you said, practicing the things that bring you more faith, that grow your faith and give you peace can have such a amazing impact. So I love that because there are times I get pushback from people about having no regrets, it has nothing to do with about doing things perfectly. It has thing. It has everything to do with doing things intentionally. And when something isn’t right. Making it right, you know, doing it differently the next time and the next step.

[00:26:28] So I think just even that example of knowing I can spend time with her, you didn’t do that with your dad doesn’t mean you need to regret that. It just means I made a different decision. And I took that time and I savored that sacred moment with my mom. So thanks for that encouragement.

[00:26:42] Faith is. It’s a mystery in a lot of ways, but it is a gift and it is so important. I can’t imagine living this life without it.

[00:26:50] Liuda: And the other thing I just want to add for, for people listening to think, faith is going to get you through everything. I spent a lot of time yelling at God because I could not understand how this could happen, how I could be thrust into this situation, how I was supposed to care give long distance and how mama didn’t know who I was.

[00:27:13] I mean, that, that just. That just how could God do that? And so to have faith. I believe is also to know that you can yell at God and it’s okay. Somebody told me it was okay. So he’s got big shoulders. He can handle it. But it is a release that, you’re not going to call up your best friend and yell at them. And why is life this way? And, but you can do that with God and you can just let it go. And you know, that God is still going to love you through this. And with any luck at all. with faith, he will show you a different path, a better path a less traumatic path to take. So that’s yeah, I can’t imagine living without faith.

[00:28:05] Rayna Neises: Well, thank you, Kiuda. Do you have one last little nugget that you’d like to share with caregivers, whether they’re just starting or in the middle of their caregiving season?

[00:28:15] Liuda: One is that you cannot do it alone. No matter if you wear your cape, you know, Superman, super, you can’t do it alone. You may try and you will fail. That’s, that’s very, very simple. The other thing is no matter what you do, bad things are going to happen. Falls will happen. The facility or the hospital or the caregiver, if you have an outside caregiver, will do something that will hurt your loved one.

[00:28:40] You will do something that will hurt your loved one. All of that is going to happen and you are doing everything with love and with faith and with the hope that you’re doing the best and no matter what, bad things are going to happen, but there will be good things to follow.

[00:29:02] Rayna Neises: Yeah, so wise. I think so many times people are trying to control things to prevent the bad. And the truth is, we can’t eventually, eventually, we’re all going to be going home, so we’re going we’re in the process of walking our loved one home. So we can’t prevent that. It’s it’s not it’s going to happen eventually.

[00:29:23] But you have All you can do is do your best and do what you can to keep them. For me, my motto was happy and healthy as long as possible and just being able to do what you can. So I think that’s so wise. We want to be wise and do the best that we can, but thinking that we can prevent it all is It’s not, there’s, it’s just going to rob you of your peace.

[00:29:44] Liuda: Yeah, yeah.

[00:29:48] Rayna Neises: Well, Liuda, thank you so much for sharing with our audience a little bit of your story and just a lot of your faith and wisdom. I appreciate it.

[00:29:57] Liuda: Thank you, Rayna. It’s been a pleasure to be here.

[00:30:01] Rayna Neises: Listeners thank you for joining us today for Stories of Hope with Liuda. A Season of Caring podcast has been created to share stories of hope, of living content, loving well, and caring without regrets.

[00:30:12] If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring.​