Tracy Crump: 0:00

I did my research and anybody, you don’t have to be a nurse to do that. You don’t have to be a social worker to speak up. You can speak up for your loved one. And it’s important that you do because they can’t advocate for themselves.

Rayna Neises: 0:13

Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises your host and today we have special guest, Tracy Crump. Tracy, dispenses hope in her new book, Health Healing, and Wholeness, Devotions of Hope in the Midst of Illness. Her articles and devotions have been featured in publications, such as Guideposts Books, The Upper Room, Focus on the Family, Parent Life, Mature Living and Women’s World. but she’s best known for her contribution of more than 30 stories to Chicken Soup for the Soul and other anthologies, course on writing for Chicken Soup for the Soul is one of Serious Writer’s top sellers. As co-director of Write Workshops. Tracy encourages others to write better, right now. And she edits the popular newsletter for story call-outs, does freelance editing, proofreads for Farmer’s Almanac and serves as registrar for the Mid South Christian writers conference. But her most important job is grandma to four completely unspoiled grandchildren. Connect with Tracy through her website Tracy Crump.com. Tracy. I’m so excited to have you here today. Thank you for joining us.

Tracy Crump: 1:26

Thank you. I’m looking forward to talking with you.

Rayna Neises: 1:29

Well, Tracy, I know that your heart is to encourage others who are in this season of caring because you’ve been there. So tell us a little bit about your caregiving story, and I know you have nursing in your background as well. So how did that impact that caregiving?

Tracy Crump: 1:45

I worked as a nurse years ago. I wanted to be a nurse from the time I was 10 years old and I worked in ICU for five years.

Rayna Neises: 1:52

Oh,

Tracy Crump: 1:53

And then I retired at to be a stay at home. I ended up homeschooling. And when our son graduated I started writing. And so for about three years, you know, life went on. But then my mom started showing some odd symptoms. She just started declining mentally, just suddenly. She had always been an avid reader. She worked for banks for years, so she took care of all their finances. She was just on top of her game. And all of a sudden her memory just started declining. Then she displayed other odd symptoms that I didn’t understand. We began going to doctors, they did an MRI and MRA, which is a more detailed test. And couldn’t really find anything to explain some of her symptoms. neurologist we saw, he did just a very brief little memory test and declared that she had Alzheimer’s or had dementia anyway. But I knew that didn’t go along with some of the odd motor symptoms she showed. She would lean over sometimes and not even realize she was doing it. She began fall. Other things went on and I, for weeks and weeks I couldn’t sleep. I just, I was worried. I didn’t know what to do. I kept going over and over in my head. What else can we check? And I would, you know, would pray. And I would say, Lord, you know, you take this. I don’t know. And of course not take it right back and say, Oh, wait, we haven’t checked this. What about this? And so that went on for a long time. And then one night I just said, Lord, I can’t do this anymore. I don’t know what else to do. I know in my heart that something else is wrong. And as I was going to sleep that night, suddenly the memory came back from a friend whose dad had had some similar symptoms and he had begun falling. And I thought, what was that? That they decided he had? And it was called Normal Pressure Hydrocephalus, not something the normal person would think of. The next morning I got up, I looked it up and she had all the symptoms so we went to see the neurologist, next time I said, could she have this? He said, no. I said, why not? Why do you think not? And he said, because her MRI doesn’t show. But I had done my research and I had found that the MRI is not always a definitive test for this and that there was a more detailed tests that you could do. And so I asked him about that. Well, when I said something about that, he kind of backed off and he said, well, he said, you’d have to go to a neurosurgeon and have that done. And I said, okay. And we went to the neurosurgeon and he examined her and he said, well, she’s got dementia. And I said, well, what about normal pressure hydrocephalus? Could she have that? And he said, no., I thought deja VU we’ve been here before and I said, why not? He said, well, first of all, the MRI doesn’t show it. And he said, also she, he watched her walk and he said she can lift her feet. And I said, but one time we were coming up the steps to the door and she suddenly stopped. And I said, what’s wrong? She said, I can’t lift my. And he said, well, he said, you know, she doesn’t have, she doesn’t have normal pressure hydrocephalus. I said, I understand there’s another test that you can do. I said, I’d like to have that. And he said, well, if you really want to, and it was kind of like, you’re a bad daughter because this test was very involved. It was a painful procedure to have done. You’d have to come back three days in a row to have scans. And I. You know, I just got this feeling that I’m a bad person for insisting on this when she’s just got dementia. So I talked to my dad and we eventually had it. It’s a long involved story, but we eventually had it. She did have normal pressure hydrocephalus and she had surgery, it was a treatable condition. Whereas, you know, with your dad, that Alzheimer’s is there’s very little, they can do.

Rayna Neises: 5:36

Right.

Tracy Crump: 5:36

but in this case they can insert a shunt and within three days, she made an amazing turnaround. She had gotten to the point where she couldn’t speak more than like one or two words answering the question. She had no memory, no memory, and she couldn’t even walk. It had affected her that much. Within three days, she made an amazing rebate. But she had gone so far that she never did really recover her mobility. And that’s one thing I have regretted that I did not push this earlier. But we had her for three more years and we would not have had I not said there’s something more I think we can do. I I did my research and, and anybody, you don’t have to be a nurse to do that. You don’t have to be a social worker to speak up. You can speak up for your loved one. And it’s important that you do because they can’t advocate for themselves.

Rayna Neises: 6:28

Such a great story and I appreciate the encouragement of that for our listeners, because exactly what you said there is some shaming involved and it is such a delicate relationship with the doctors. have such a short period of time to interact with them that when I put the shoe on the other foot, and I think of how they must feel walking into the room and having somebody through all this stuff at them. They don’t know us. They don’t know the history. They’re not with our loved one all the time, like we are. And so I wish that they would be more open. Not all doctors are open, so I love that you were willing to go ahead and just keep pushing asking those questions. And I often tell people if the doctor’s not willing to let you do that, find a different doctor, because you really do have to find ones that will listen to you as caregivers. We know our loved ones better than anyone else, so we have to be willing to do that. So I love that. When we look at that advocacy part, how can we act as our loved ones, advocates? What’s the best way to go about?

Tracy Crump: 7:37

Well, I think there’s several things that we can do. I think first of all, is speaking up and doing our research. We don’t want to just go in and say, well, I think it’s this or this or this, you know? And we don’t want to put ourselves in an adversarial position with the doctors. We don’t, that’s important that they need to be on our side. For our loved one, but like you say, we know our loved ones better than anyone else. And I think another thing I had another experience that was very telling to me my dad, he had multiple, multiple health issues and one time I was at the hospital with him, he had heart issues, lung issues, and he went into pulmonary edema one day. He had congestive heart failure. And so we, we went to the emergency room and we stayed about half a day there. They admitted him and I went to the room with him and stayed with him. It was very tempting that night to go home, but I thought I’m going to stay there. There are too many things that can happen without someone there. He was perfectly with it, he did not have dementia. He was in his eighties. And of course we all have, you know, a little bit of issue and we’re older. I can attest to that, but he was very well. And so I had stayed that night. We didn’t get much sleep. There was noise out in the hall. He was snoring him. So I was on the little couch beside his bed. Then about six o’clock that morning, a nurse kind of crept in, she was trying not to wake me up and very nice talking softly to him, woke him up. She said, I need to give you a medication he said very intelligently he said, what is it? And she said, it’s a nitroglycerin patch. Well, the doctor had told us, and this was probably a year or two before that, that he was on a medication and not to ever let anyone give him nitroglycerin that it would probably kill him. If they did. Man, I popped up off that couch, like a Jack in the box. And I said, oh no, no, no, no. I said, we cannot give him that if him possibly kill them because of a medication he’s on. That poor nurse she ran out of the room. I didn’t see her again. They sent somebody else in after that, but it just shows that ha had he, he was gonna let her do it. He was going to let her put that on. He did not remember. That the doctor had said that, and I would not have known if the doctor not told me, I mean, I looked up medications. He was on a list that would make your heart stop. I wouldn’t have known that. And so that’s shows how important it is. I think one of your guests a few weeks ago mentioned how important it is to stay with a loved one at the hospital and to be there, to advocate for them. And that just goes to show that things can happen. A mistake can happen anytime. And actually the funny thing was that was something the ER, doctor had. And for some reason it was not given in ER, and usually those orders don’t carry over to the floor, but for some reason it did and the ER doctor should have caught it. The pharmacy should have caught it.

Rayna Neises: 10:24

Hmm.

Tracy Crump: 10:25

And the nurse, I wouldn’t really have expected her to know it, but she didn’t catch it either. So there were three layers that it went through and was almost given to you. So I think another important thing is to be there for your loved one, as hard as it is sometimes, especially for people who work full time to be at the hospital. It is so important because things like that can happen.

Rayna Neises: 10:47

Yes. There are so many things to remember that two brains are always better than one. And so, you know, having someone to help. There’s just a normal overwhelm that comes with everything that’s happening. And so it’s difficult for them to think clearly anyway, much less to remember something like that. Again, I can go back to my sister, did an amazing job of creating a meds list and any of those types of things were something we noted and had right there on the list so that we knew that at least if we were questioning ourselves, we could go back and look.

Tracy Crump: 11:22

Exactly. Yes.

Rayna Neises: 11:24

Allergies, because like you said, a lot of times medication allergies, unless when you admit them, unless it gets on the forum, right. Then if it’s an older one that you’ve forgotten about, that can make a big impact to

Tracy Crump: 11:36

It can, it can Yes. In fact, that’s one thing we did too, is kept a detailed medicine list and their past history. My dad, like I said, he was on a list that the specialist. would look at that and go what, he’s all of this medicine and you’re not going to remember that. And if you have to run out the door to an emergency room visit or does to a doctor’s office, visits you weren’t expecting, you’re not going to remember those things and it can make a difference in their care. It really can. yeah. And that was another thing that I’ve thought was very important was to have that detailed list with you.

Rayna Neises: 12:07

And so you’ve got your durable power of attorney and you’ve got that list of meds. And we even had them, in a notebook ready to grab and go, but just even having them in your car, like you said, if you were somewhere else. To be able to have that with you. I have my own list in my purse all the time. that it’s very long at this point, but it still has medical history. It has those doctors and every time I go to a doctor’s office and I pull out my list, they’re always like, oh wow, I’m so organized. But it’s because, I know how important that is in the long run. And we might as well start today. So.

Tracy Crump: 12:40

That’s right. That’s right.

Rayna Neises: 12:42

So as an advocate, really doing your research. And I think listening to your guts one piece that’s really important. And then being present and being that advocate while you’re right there, you can’t do that if you aren’t there. So being able to be there with them and then making sure you have things written down, any other things that you had in mind.

Tracy Crump: 13:02

Well, I think it’s important and you probably did this too, was to take notes whenever you go to see the doctor or when you’re at the hospital with them. There’s so many things and I can tell you this from my own experience that you know, you mentioned not being able to remember some of these things when you’re the patient. I remember one time I had a fever. Things like fever, pain nausea medication, or if you’ve had surgery, the anesthesia can affect you for a while. All those things can affect your memory and you don’t remember what you need to tell the doctor or you don’t say it right at one time when I went in for appendicitis, I was dehydrated. I had fever. Then he asked me kind of the timeline of how things went. Well, I got it all wrong. Fortunately, it didn’t make any difference in my case because he could see by my lab work. and my CAT scan that I had appendicitis and he went on and did surgery, but it could’ve made a difference in other situations. But I think it’s important to, to take notes because a lot of times, even as the caregiver definitely is the patient, but even as the caregiver, your anxiety level can be pretty high and you think, okay, I got it. He’s the ones who do this. He’s going to get this. We’re going to come back for this. And then you get home and you’d think now, what did he say? I don’t remember. So I think it’s important. I take a thick notebook with me, but one that would fit in my purse and I just took notes. And I do the same thing for myself when I go. I take notes about what, what do they want to do next? What are they thinking? This might be. What medications do they want to start? All those little details that you need to make sure that you’re on track with your own care or your loved one’s care. So I think that’s important.

Rayna Neises: 14:37

And that little notebook, having that with you, that you can then reference back even while you’re at the doctor, because sometimes people just write notes on a new piece of paper or whatever, but knowing, two years ago when we were doing this, we talked about that or whatever, and that really does help because the doctors have so many patients. Even more now. I think they’re just so scheduled back to back that they don’t really have time to look at that history. They’re having a tendency to look at what’s happening right in front of them versus especially years ago. So that’s a great tip as well.

Tracy Crump: 15:12

And this true.,

Rayna Neises: 15:13

So how important is an advocate the patient is mentally sound?

Tracy Crump: 15:18

Well, just like I mentioned before, a lot of things can affect. You know your memory and how you take things in, just like with my dad, he didn’t remember. He wasn’t supposed to take nitric, listen with the medication he was on. He, he didn’t remember that at all. And the things that can affect your, your, your thinking at the time, your clarity, the fever, the pain, all those different things, they can affect how clearly you are thinking and saying what you need to say and taking in what you need to take in. So I think it’s very, very.

Rayna Neises: 15:49

Did you find with your parents, that there was any discomfort of that role of you stepping in as an advocate?

Tracy Crump: 15:56

That’s an interesting question. Yeah. Eventually, no, I think at first, a lot of times the doctors tend to look at the caregiver. I don’t know if you’ve had that experience, but a lot of times they’ll kind of not address the patient, but they’ll address the caregiver. And so sometimes I would say, I don’t know what do you think dad? You know, when they ask me a question, what do you think, mom? Of course my mom, when she was developing the problems, she couldn’t think she couldn’t, and it was no problem with her. But with my dad, I had to kind of the, okay let’s put the folks back on him. He had trouble hearing, which was another issue and can be another issue, especially with older relatives. So he couldn’t, and we had a, a foreign doctor, trouble understanding him. So and the room contended echo. So he would kind of look at me sometimes. So I knew that was my cue to step in and go ahead and answer the question. But they didn’t really take a fence. I don’t think they did, they would probably say she was a nurse,

Rayna Neises: 16:55

Mm.

Tracy Crump: 16:56

so they didn’t mind my stepping in and kind of taking over.

Rayna Neises: 17:01

I think sometimes that can be a dance as well. You’re dancing with the doctor and trying to, not be too pushy and you’re dancing with them the person you’re caring for, because you don’t want to be disrespectful or not honor their autonomy as much as possible. My situation that point in which the progression was happening, it became obvious when dad was overwhelmed by it, but it can be hard for people that are of sound mind to feel like. It’s okay. To let someone advocate for them. I had an aunt who mentioned to me that when her daughter came with her to the doctor’s appointments, she felt invisible

Tracy Crump: 17:38

Um,

Rayna Neises: 17:39

she quit letting her daughter go with her for a period of time because she really felt like the doctors treated her so differently. It really bothered her. And so that was a difficult navigation for their relationship because of course her daughter wanted to be there to get that second set of ears and to be able to take notes and do those things. But it really. Impacted how my aunt felt that the doctor interacted with her, so it can be a difficult dance. I think being the advocate is so important, but you do have to figure out how to do it in a way that is comfortable for everyone.

Tracy Crump: 18:11

Yes. I agree. I agree.

Rayna Neises: 18:14

So that is perfect lead into caregivers because I think that can be so tough for people who need care to accept outside, help. we talk specifically to family caregivers, and I’m a huge advocate for family caregivers to realize they’re not in this alone. They need to have the support of other people and paid caregivers are important part of that team. But sometimes our loved ones don’t necessarily want to accept caregivers. Sometimes it can be really hard to find them, have any tips around

Tracy Crump: 18:49

Yeah, well, our situation when my mom had her surgery, she actually spent three months in rehab around that time. She was in rehab before she had her surgery because we didn’t know what was going on before she had that test. And then she went through some rehab too, to kind of try to regain her mobility as much as possible. So when she came home, I knew we were going to need help. Like I said, my dad had multiple, multiple health issues. He was mobile, but he wasn’t very mobile. He was definitely not going to be able to take care of her that’s for sure. And so they both actually were very accepting of my getting caregivers and getting help in there. They did live not far from it. So I was back and forth every day, twice a day, actually. And I, in the mornings I would have to go and give her an injection and then evenings, my dad would watch over her after the caregiver went home for a few hours but then I would come and help her get dressed and get ready for bed and get her. So that was our routine for three years. But we had some wonderful, wonderful caregivers. just didn’t feel I could be over there all the time. I had, you know, my own home, my own career that I was working on. And if I had to, I would have, but it really worked out that we found some just awesome caregivers and we started out using services and as you probably know that the rights are really high. And it was, it was a concern of mine that, that my parents were going to outlive their money. And I know that’s a concern for a lot of. so I was trying to be as conservative as possible but still get the help that we needed because I knew this was going to be long-term. We were in this for the long haul. And so I had talked to several companies and we had people come in and we had some wonderful people. But when I got the second call at four o’clock in the morning to say that they didn’t have anybody to come out that day I thought this is, this is not working. I thought part of being with a service would be what they would always have somebody to fill in. But apparently that wasn’t the case. So I just, when I started looking for some private caregivers, And I put out the word through our church and through friends, churches. I was part of a homeschool group still, even though we weren’t homeschooling anymore. And I put out the word there and I started getting some leads. We had some wonderful, wonderful people. I would say we only had one experience. It was not good. And that one, we had looked found a woman through a newspaper ad. And I had talked to her and I. Call them out to interview them and kind of saw how they interacted with my mom, particularly. And of course, they were taking care of both my mom and dad. But, but my mom in particular. And we would kind of go through her routine and what all she did and all that. But particular woman did not work out. There were some issues there. And so. I had to let her go, which I know in your book, you talk about, you were kind of the tough one and your

Rayna Neises: 21:33

Yeah,

Tracy Crump: 21:34

of like, I probably slant towards your sister, but I ha I had to do hard things. Sometimes you just have to. But we had one lady, she came right near the beginning and she stayed to the end and she was like family. She really was. She was, I called her my right-hand woman. They cleaned, they cooked, they did anything that they needed to do. They would have taken to the doctor, but I wanted to do that because I wanted to be there to advocate for them, but they would have done it. It had snowed and Joan went out there put salt down and cleaned off that ramp. So, we wouldn’t slide down that ramp. She would do anything that we needed her to do. And we had others that were at just absolutely amazing. Funny how each of them had a different strength that they brought to the table and that would help my mom. Like one lady would, she would do. And she, you know, my mom never was that big on, putting nail Polish on, but she liked to be pretty like any woman. And she had trouble hearing after she had her surgery, she lost a lot of her hearing this lady would get down in her face and they would do nails. She wouldn’t do nails and they would just talk and talk and talk.

Rayna Neises: 22:37

Uh,

Tracy Crump: 22:38

And so that gave my mom that interaction. And another lady was good at doing hair. She had been a hairdresser in the past. And so she would, she would color her hairstyle it and all this stuff. All these little things just kind of helped make my mom’s life better. Um,

Rayna Neises: 22:54

that’s amazing.

Tracy Crump: 22:56

My dad, the big thing with him was can they cook well? If they could cook, he was okay with it.

Rayna Neises: 23:02

There you go. Yeah. Yeah. you gotta have your priorities straight, Right! I think that is such an important part of being an advocate is realizing that. If we look for supports, then we can do the important things that we need to do. And that means having a life, maintain our own life, our marriage relationships, our career, those things the same time as honoring them and making sure they’re well cared for. And I think that’s our role when we’re advocating for our loved ones. It’s not an easy role. But it’s definitely important to understand that it’s more than just being there 24/7, that’s really not the best solution. I love that you brought out the gifts of the different caregivers, because that’s the thing I felt like my dad kinda got tired of me after three days and he was ready for a new personality and a new experience. I think that it can be such a blessing to have those different people around and to bring their personality, their gifting, to the team and help the person that we’re caring for, get over the mundane life that they’re they’re having. If they’re looking at the same person all the time. So, I love that. And it is such a challenge in finding the help, especially I live on a farm in Kansas and in the rural areas, finding even a company that comes out can be a challenge, but I love how you used resources of just a network that you’ve already created of people asking in church and in other organizations. Who would be good at this, who might be looking for work to be able to do this, because that is definitely necessary for a lot of people to find that themselves. So, it’s a challenge, but it’s an important thing to be open to because I think sometimes it’s easy to say, oh, I just didn’t find anybody. Realizing that it’s going to take a little work to do it, but it really does help in the big picture, everybody.

Tracy Crump: 24:57

Yes. Yes. And you just have to keep looking to, sometimes I keep asking and like you said, a network, ask this person and that person knows somebody who knows somebody, and sometimes you can find the best people that way.

Rayna Neises: 25:07

It’s always wonderful when they fall in love with your loved one, it just does amazing things for your heart to see them, like you said, I could totally see that interaction and just the handholding, touch can be so important, especially when hearing has an impact.

Tracy Crump: 25:22

Yes. Yes. another story about my mom too, is one of the caregivers. She just had a, such a caring heart. And toward the end, my mom just developed some irrational fears and she

Rayna Neises: 25:34

Okay.

Tracy Crump: 25:34

very fearful. Christy would sit there and hold her hand. One day I walked in was leaning over my mom’s chair, that we had big recliners for them. She had her sweatshirt, pulled over her head, hanging from her arm that was holding my mom’s hand. And she had tried to sit down and a glass of water my mom and my mom grabbed her hand. And

Rayna Neises: 25:56

Um,

Tracy Crump: 25:57

go. She had stood there for probably an hour

Rayna Neises: 26:00

oh,

Tracy Crump: 26:00

She got hot so she just pulled her shirt over and let it hang rather than let go of my mom’s hand. That’s how caring she was. And so we were just really blessed with some wonderful people.

Rayna Neises: 26:12

They’re out there and we do have to sometimes look really hard. And like you said, we have to be willing to say this isn’t working when it’s not working. So release them to find what works for them and that can be a blessing in their life as well as yours to find the right people that are a good fit for you. Well, Tracy, our time has gone. Thank you so much for being a guest today. I think some of the things that we talked about that advocacy role is kind of a dance and figuring out how to push, whether you need to let go a little bit and let it happen, but it is so important. And I really the encouragement that you offered the listeners too.

Tracy Crump: 26:48

Well, thank you so much for having me Rayna, I’ve enjoyed it

Rayna Neises: 26:51

So, you can find Tracy’s writing in a variety of The Chicken Soup for the Soul books. You can also find out more about what she’s up to at www.tracycrump.com and definitely check out her newest book. Health Healing and Wholeness Devotion Hope in the Midst of Illness for those that you’re caring for. It sounds like that could be a real blessing. And just a reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have financial medical or legal questions, be sure to consult your local professionals and take heart in your season of caring.