Welcome to “It’s My Turn To Care.” We know the challenges you face caring for someone with dementia. That's why each week we bring you tips, strategies, and most of all, support, as you navigate your role as caregiver. Let's get started. [00:15.6]
Dave: Hello. This is Dave Parks. I'm the owner of Home Care Assistance and the host of your podcast, It’s My Turn To Care: Secrets for the Dementia Caregiver, and we look forward every week to bringing you tips, some strategies and things to think about as you go down this journey of taking care of someone who suffering with some form of dementia.
Today, we have our first regional guest, Dr. Cathi Neal. Dr. Neal earned her doctorate in clinical Christian counseling in 2017, and for the past 23 years, she has worked in the outdoor adventure world, providing group and individual sessions for those needing to modify their behavior. [01:09.2]
In 2005, she found herself in the unique position of caring for her sister who was dying from cancer and her 88-year-old mom suffering from dementia. Today, she's going to talk to us about how to survive and maybe even thrive while caring for your loved one with a terminal illness or dementia.
I love that last statement, Dr. Neal, because I've come up with a new word and it's called “surthrive,” and we really want our listeners to do more than just kind of make it through the day, which is sometimes a very worthy goal and we feel satisfied with that, but over the long-term, we really want them to thrive on this journey.
So, welcome to the program.
Dr. Neal: Thank you very much for having me today. [01:58.2]
Dave: Tell me a little bit about your story. You are kind of a unique sandwiched generation in a sense. Most people are caring for their children and their parents, but in your case, you're caring for your sister and your parents, so tell us a little bit about that.
Dr. Neal: I am 20 years younger than my sister that I was caring for, and my other brothers and sisters were all even older than that. I was a surprise baby when my mom had me, and so my sister could have been my mom and my mom, my great grandmother, but it turned out that it was my sister and my mom. That's how that happened.
Dave: All right, so tell us a little bit about your experience with your sister. You were essentially caring for two adults at the same time.
Dr. Neal: Yes, sir, I was. My sister was diagnosed with lung cancer. If you've ever been a caregiver for someone who is going through that, you know that there are times when their medication causes them to not be who you thought they were, who they used to be to you. [03:10.6]
So, as it progressed, towards the end, she was having night terrors and it was a bad time, and anybody who has been through that, they just know, and I was feeling very guilty about how I felt about her at that moment. She was doing a little bit better, and then my mom called us one day and she goes, “There's somebody outside. I'm locked in the bathroom. I don't know what's going on,” and me and my sister looked at each other and I got in her car, because she had a better car than me at that time, and I drove. My mom was about an hour and a half from us and I made it there in about an hour, and she was having a…I guess it was hallucination. That’s kind of how those things started. [04:00.0]
She lived an hour from my sister and we tried to get her to come up and be with my sister, but she wouldn't. She wanted to be in her own home. I guess from about four or five months there and before my sister passed away that I was in two locations caring for both of them.
Dave: Wow. Were they generally in the same city or were they different?
Dr. Neal: About an hour away from each other, hour and a half.
Dave: Okay, yeah.
Dr. Neal: And my mom, I guess she was a little independent what you might say and she was determined on being in her own home, but she would call and we knew that there was something wrong. So, we got her to come stay a couple of weeks with us, but while she was there, she started… I guess she was hearing things in her own head at that point in time and we kind of found out later that the episodes that she was having were actually because of some elevation from her kidneys not emptying out. I can't remember exactly what it's called now, but that was…
Dave: Right. [04:58.6]
Dr. Neal: But when that stuff built up, then she would have this, an episode, and then after a little bit she'd be okay. Sometimes she remembered it and sometimes she didn't, and being able to tell her what was going on was a little bit difficult in the very beginning.
Dave: Yeah, my mother suffered from hallucinations. We would come to visit and it was always the same one, interesting enough. She would say that there was this man that came over to the house and got in bed with her and my dad. So, before I got into the business, I would kind of, I don't know if argue is the right word. I'd be like, Come on, Mom. You know that didn't happen. And in her mind it really did happen. Anyway, so I would handle that a lot differently today, but at the time I thought that was so odd. Why would she make that up? I didn’t realize she was actually suffering from something. [05:56.6]
Dr. Neal: I think the onset of the onset of dementia or the onset of even, I guess, medically-induced dementia when people are taking morphine and those types of things, for a caregiver, you don't know exactly what's going on and it's kind of scary, and you don't know if it's normal and you don't really know how to react or what to say or what to do. So, it can be a very frightening time and I don't even know if you really ever figure out exactly what you should be doing or not, but you learn how to deal with that if it's a long period of time.
Dave: Sure. I think a lot of it is there's no perfect solution, but there are some things that have worked for other people and, depending on your situation, it could work for you. Talk a little bit about kind of the highs and lows that you were going through emotionally during that time.
Dr. Neal: For me, I guess there was a little fear. When you're talking about highs and lows, I think about my depression or if I'm getting through that day okay, and it's because you were exactly right that some days it's just getting through the day with all the stuff that might be going on and all the things that are being said. [07:11.1]
It was, like with my sister towards the end, there was a knowing. We both knew that she wouldn't be with us very long and I can remember her breaking down one night and saying, “I'm so sorry that you have to do this for me.”
Dr. Neal: Yeah, and I just held her because now as a caregiver, I'm going, What did I do? Did I portray something to her to make her think that I'm upset with her or whatever else? And so, those are some pretty lows when you're going, What am I portraying to them? when you're trying your best just to be positive and be upbeat with them and cheerful, and so that's pretty low.
Dave: Yeah. [07:52.8]
Dr. Neal: Yeah, and on the high side of things, my sister had a good support system and was able to call on them at times, and her friend would come in and go, Look, Cathi has got to go, because [she has] become really dependent on me, and she would be like, Look, Cathi has got to go and get away from here for a while. I'm staying. I don’t care what you're saying. That was just that type of friend she was. So, if you had those people in your lives or the ones you're caring for had those people, it's kind of nice to have to not tell them no. When they offer you help, don't tell them no because you really need it.
Dave: Yeah, and that comes up a lot. People, they want to help, but sometimes they don't really know what you need, and so one of the things that we try to let our families know is be ready for that offer because you don't know where it's going to come from. It could be that you see a friend you haven't seen in a long time or maybe it's a close friend, but be ready for that offer and say, You know, now that you're offering, it could really help me if you did this or this, and kind of give them a choice. [09:06.5]
One could be a very small commitment, but one could be maybe it's a weekly commitment or something. Yeah, I just think it's important, too, because people want to help in most cases or they wouldn't offer, so just kind of be prepared for that offer.
How did you take care of yourself while you were taking care of your mother and your sister?
Dr. Neal: I think that kind of relates to the last thing that we were just talking about in that, when someone asked, I had to not let pride and ego or fear of if I let something bad would happen, I had to let go of those things and be able to step outside, and to be able to go take an hour or so for myself. I know that, like with my mom.
I had cared for my sister for almost a year when my mom got so bad and I had left to go to a wedding one day. She was doing pretty good, and so I thought, I'm just a few hours away and it's not going to be very long. I called her on the way home from the wedding and asked her what she wanted for dinner, and she goes, Hey, Dad, what do you want for dinner? And my dad had been gone for 15, 20 years at that point in time. [10:19.2]
And so, when I got home, I sped home, and I would just say this. It’s not going to change anything. Make sure that you're taking care of yourself and you're not doing things that's going to harm you, because if you're harmed, then nothing, then you're not going to be there to care for the person that you need to.
But I got home and I was able to just look at her and she goes, What did I do this time? Yeah, and so I just said, “Well, who did you want to get dinner for?” because I wanted her to kind of…to see if we could go back and get around this or she would understand what was going on and why I was so concerned, and those types of things.
Dave: Yeah, sure. [10:58.5]
Dr. Neal: The one thing that I think was “the” most important thing that I did, though, was my mom kept getting worse and all her things were about family stuff, and I think that when people are getting ready to exit this world, there's a lot of things that they're trying to reconcile in their head.
Dr. Neal: And she almost fought me. This was how bad this was. I have a niece that was the same age I was, but she was mentally retarded, and she was screaming at me that the niece was out in the road about to get run over and she had to get outside and care for her. I kind of convinced her. I kind of convinced her to go ahead and sit down, and then I'd go check and look and make sure everything was okay. I played with that just a little bit.
The next morning when she woke up, I looked at her. She said, “I had another one of those episodes yesterday, didn’t I?” and I said, “Yes, Mom, you did.” I looked at her and I said, “You know, I can't lay in front of the front door and the back door to make sure you're going to be okay, so we have to do something else,” and she said, “Yes, we do.” [12:07.1]
So, a suggestion on making sure that when you have conversations, maybe where you're going to be talking about assisted living or having someone else come into the home, you should find a good time to do that and not when they're having episodes. It will be better for both of you guys.
Dave: You're lucky in that sense in that she understood. Sometimes those conversations take place too late and it's a much more difficult situation. So, we always recommend that families go ahead and have the conversation, and one thing we also say is don't make any absolute promises because we hear from families that “I promised my mom I would never do this.” [13:01.2]
Probably nine out of 10 times, you probably can keep that promise, but there may be a time or two where you can't keep the promise and you just don't want box yourself in, because ultimately you want to do what's best for your loved one and that may not necessarily be what you promised you wouldn't do. Right?
Dr. Neal: True that, and the fact, too, is that when we make those promises, then that just kind of adds that guilt and that shame and the regret of what we said onto all the other stuff that we're trying to deal with at that moment in time. And so, I always try to be careful with my words, but I think when we're talking to someone who is sometimes there and sometimes not as the person that we knew them, you need to be careful what is said and say it in the most loving kind manner you can whenever, and in a setting that they're familiar with, too. [14:01.6]
Dave: Right. So, did you end up putting her…did she end up going into a community somewhere?
Dr. Neal: She decided. She picked her own nursing home to go to and we kept her there for a while, but then I still lived about an hour away from her, and so it became more apparent that she needed to be closer to us and that we needed to be there more often, like every day instead of once a week or twice a week or whatever. We needed to be with her every day.
Dave: Right, and that's the other thing we mentioned to families that, if going into a community is the best solution, in today's world it's a whole different world, but don't rely totally on the community because there are certain limitations that you can do in providing a certain amount of types of support and love and comfort, and that the community is going to take a lot longer to develop that relationship. You already have the relationship, so you can… [15:03.9]
Even with people that have kind of far along dementia, they can still, in many cases, recognize someone that they're comfortable with.
Dr. Neal: That’s a good point.
Dave: It’s important to stay in touch and to visit as often as you can, and I know in today's environment, it's very difficult, but even phone calls or going through…I've seen it on video where they're looking through the window, I mean, all of that may not seem to us to be that effective, but I think it really is so.
Dr. Neal: It is, and I think something that I'd like for everybody to take away from this would be the fact that, so when you go visit, they may or may not know who you are at that point in time, and just kind of understanding and realize that's got nothing to do with you. It's got everything to do with the illness, and I would play along those because there was no need. There was no need to upset her in any way, form or fashion. There was no need to upset her. [16:08.7]
Dr. Neal: So, I would leave and just cry my eyes out, because I’d be like, Do you even know who I am? Then, she thought I was my sister a lot. So if you have any family issues that came up about those, moms always loving somebody else more like that, you can't let those affect you when you're being a caregiver, because it's not about you at all. I say that talking about whatever the person is saying to you at that time, whatever, whoever you're caregiving for is saying to you, because they don't know and it's not them. Then they're confused and then they get angry sometimes because they're confused, and the more you try to get them sometimes to be what you want them to be, it makes matters worse.
Dave: That’s why I've heard it described as you can enter their world, but they can't enter your world. [17:05.6]
Dr. Neal: Yes, exactly, and it’s a can't. It's not that they don't want to. It’s that they're unable to. They’re totally unable to, for sure.
Dave: Right. Because they were an hour apart. Your sister was passing with cancer. Your mother I'm assuming that she was slowly deteriorating. How did you kind of maintain without being resentful towards that situation?
Dr. Neal: That's a great question and I think it's one that I still work on today a lot because my sister, when she was towards the end, she was having night terrors, so she wanted me in the room that she was in, but she was in the living room and she wanted me laying on a pallet right next to her. I felt obligated to do that, and then I got resentful because she wouldn't get a hospital bed and let me sleep on the couch. [18:06.2]
It’s petty. I know that's a petty thing, but when you’ve got all this other stuff going on with you, it's like, Couldn't you just get a bed? And so, one day, her friend walked in and she said, “We're done. We're going to get in the hospital bed and she's not sleeping on the floor anymore.” So, I had that protector or that person who would go in and say, We're not doing this anymore.
But I think sometimes it's important as a caregiver to speak. I should have said, Sandra, I know what's going on with you, but for me, this is what I'm going to have in order for me to be able to take care of you, because I wasn’t sleeping. Every time she…and during the day when her meds…she was sleeping, but I wasn't, so I used to take care of her.
I think it's important to speak what your needs are, go ahead and get what you need, and then manage that that way, because I could have called and got a bed and I just should have, and I could have slept in the bed if she didn't want to. [19:02.9]
Dave: Yeah. Before we’d ever gotten into the business many years ago, my sister was the primary care provider, even though my parents were in a memory care community in Atlanta. We live in Texas. But, anyway, she finally…probably it took several years before my sister would give up some responsibility because you get a little bit of the mindset that can be kind of dangerous, which is I'm the only one that can do it. I’m the only one that knows my mom or my dad. I might as well do it myself because no one can do it as good as me or I’ll have to correct what they do. So, it's almost like a management course in a way. I mean, you have to learn to delegate responsibility and it's not easy to do, but in the long-term, it's definitely the right thing to do. [19:59.0]
In our case, since I lived in Texas, I couldn't provide hands-on care, but I could help her with the bills and Medicare, and all those things that go with paying bills and doing their taxes and things like that. So, that was the responsibility that I took, and then my brother would help a little bit with the care side of it. But it took, I don't know, maybe 10 years before we kind of got to that point where she was willing. Even at that point, she was not totally willing to give it up, but I told her essentially that because we were there on Christmas vacation and I told her I wasn't leaving until she gave me. She goes, What's going to get it? I explained all this to you. And I said, “Well, I'm not leaving until you do.” Anyway, and I was in her house, so she was anxious to get rid of me.
Dr. Neal: I think you called it management when I actually think it's an art of learning how to let go. [21:00.0]
Dr. Neal: Because there's so very little control that you have when someone has dementia or is forgetting. You have no control over that, but I do have control over exactly what I do, and so if I can't manage that, I'm going to manage me and I'm going to manage the whole situation, when in truth, you learn how to let go, because I bet your sister suffered from that.
Dave: Oh yeah, and I was glad I was able to help at the time I was. So, Dr. Neal, we appreciate your perspective, but I'll tell us a little bit about your clinical Christian counseling business that you have.
Dr. Neal: Sure, so we've been doing outdoor adventure programs for about 23 years now, and a couple of years ago, about three, I guess, I went and got or I earned my doctorate in clinical Christian counseling and decided that wasn't going to do things outdoors anymore. I was going to start doing things indoors.
Dave: Okay. [21:58.1]
Dr. Neal: And behavior modification has always been what we've kind of worked with with people, and people, when I say behavior modification, they think of the people that are on drugs or those types of things, but there's all kinds of behavior modifications. This control issue, that's a behavior modification. Learning how to let go is behavior modification.
So, now, especially since March, we do a lot of Zoom meetings like this. There are a lot of people who don't come in, so we're doing things online like that. Some of my groups have been canceled with all this, but I have the opportunity of working with an ISD in Texas that went into their special ed department and teaching those youngsters how to be social with each other and then how to work with each other also.
Dave: Yeah, very good. Very good. If someone wanted to get in touch with you, how would they do that?
Dr. Neal: There are a few ways that you can. We're on Facebook, Changing Course Foundation, and my phone number is (214) 477-2673. [23:00.6]
My email address is [email@example.com] “CNEAL” [at] “CC,” “F” as in Frank, “D” as in David, “N’ as in November [dot] net. Then, our website is ccfdn.net. Charlie, Charlie, Frank, David, November [dot] net.
Dave: Okay, great. Thanks, Dr. Neal for being on our program. Like I said, you're our first regional guest.
This is Dave Parks with Home Care Assistance and we always encourage our listeners to visit our website HomeCareAssistanceFortWorth.com and our office number is (817) 349-7599. Thanks so much joining, and we'll talk to y'all next week.
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