Do You Have A Back Up Plan, My Caregiver Friend?

It was time for the final consultation for my spouse;s stem cell/ bone marrow transplant.   It was in personin Milwaukee requiring us to travel 2 hours for it.   We had it on our calendar for months.  It was the final step prior to Denis getting the cure he needed.    About 2 days prior I wasn’t feeling the greatest and I thought it was the nerves. But the fatigue got worse and then came the fever.  I was so frustrated since I was a hand sanitizer, mask wearing, clorox wipe kinda girl.  I avoided crowds and declined guests in our home for 6 months.  

I knew what I had to do. Stay isolated in the bedroom and I can’t drive in the car with my spouse.   

Again, I was so angry and frustrated.  I had to be there but there was no way.  So figured out a back up plan . 

What is your back up plan if you can’t do your caregiver responsibilities?  

You can’t say - you don’t have a plan?   There is no guarantee that you can be there all the time.  Only four in 10 caregivers would rate their health as “excellent or very good,” according to AARP’s 2020 Caregiving in the U.S. survey. This is a significant drop from the 48% of caregivers who reported very good health in 2015.

This self-reported poor health is backed by medical statistics — 53% of caregivers have been diagnosed with two or more chronic conditions, such as heart disease, kidney disease, or diabetes. That’s 14% higher than the general U.S. adult population, according to the Centers for Disease Control and Prevention (CDC). These chronic conditions contribute to lower caregiver life expectancy.

I was brought to my knees again this past week.    I ended up with a terrible stomach flu where I couldn’t be far from the bathroom and my pillow for three days.  

I thought I was being so careful with managing my new stressful challenge of Mom now starting hospice care but my take on it is that I am still trying to recover from chronic stress and my body just couldn’t fight a virus.  

As I laid there trying to recover, I had to give into my thoughts and emotions as well as taking this as a learning lesson.  

• How could I caregive anyone if I am not taking care of myself first.    I needed the rest and recovery time.  
• Things will just have to wait
• What changes could I make to reduce illness?
• Shift your mindset
• Do I have a back up plan?  

Way too many times, I hear my clients say, there is no one else, It’s me.   I just want you to take a hard look at yourself and your situation.     There may be a time where you can’t and it may not even be your fault or your choice.  

Find your team.  Ask for help. Reach out to a neighbor, friend or family member.  It could be as simple as, watching for a package that your parent is expected to get today.  To someone offers to pick up groceries at the store.  Take them up on it.  

Grab the show notes here  ➡️ https://www.cathylvan.com/episode128

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Transcript

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SPEAKER_00 0:00

Well, hello, friend, and welcome to another episode, episode 128 of the Caregiver Cup podcast. I know if you have been waiting for this podcast this Tuesday, it's a little late. My apologies, but I know this podcast episode will give you kind of an explanation why. And um it's all themed towards that today as well. So I hope you enjoyed the podcast. Let's get started. It was time for Dennis's final consultation. That Dennis is my spouse's final consultation for stem cell or bone marrow formal transplant. It was something we were waiting for for months. We had it circled on the calendar. It was our final drive down to Freighter Hospital to meet with the transplant team to go have and have that final visit, final checkup, so that we could get everything scheduled and everything in place. We were excited and we couldn't wait for it because this was his final step before he could get the cure and get the results that we needed. Well, what happened about two days prior to the consultation? I wasn't feeling the greatest. I thought it was nerves, but the fatigue got worse, and then came the fever. I was so frustrated because here I was, the hand sanitizer queen, the the mask-wearing mama, the Clorox wipe uh crazy lady that would wipe down everything no matter where we went in the car. He Dennis never went anywhere that he without wearing gloves and masks. And we hardly avoid we avoided crowds. We declined guests to come into our homes. We we declined invitations to go visit people. We did that for about six months. And here I am not feeling well. I knew what I had. And it to make kind of fast forward, I ended up with influenza. I think it was influenza B. Um, but I knew what I had to do. I had to stay isolated from him. So I went into the bedroom, stayed isolated, and it just got worse and worse and worse. And I knew I couldn't get into the car with him and drive down in this what is it, like a 10 by 10 space, knowing that I had a virus that will, you know, could potentially postpone his progress. And I was so angry, so frustrated. I had to be there, but there was no way I could be there. Kind of a what is that called? Uh I don't know, but I couldn't be there. Kind of a catch-22. So I figured out a backup plan. I had to. I had to. I wanted him to be supported. So I called our son Matt and asked Matt if he had the time to go ahead and drive with his dad there, be there for moral support and drive back. And also asked if the doctor could call me and I could be put on speakerphone so at least I could hear things and ask questions. Big a sidebar. I was the worst advocate of that day because I could barely get my head off the pillow, but at least I heard most of it. My question to you is what is your backup plan if you can't do your caregiving responsibilities? You can't say you don't have a plan. There is no guarantee that you can be there all the time. You can't plan for the unknown. And that's what I want to talk about a bit today, because we have this in our mind that we are this superpower that's never going to break or never going to get sick. But statistics show, and I'm pulling a statistic here, only four in 10 caregivers would rate their health as excellent or very good, according to an AARP 2020 caregiving survey in the United States. Four out of 10 would say they have excellent or very good health. This is a significant drop from the 48% of caregivers who reported very good health in 2015. You know, I think the pandemic has stuff to do with it, but chronic stress does too. This self-reported poor health is backed up by medical statistics. I think I might have said some of these, but I'm going to repeat them again. 53% of caregivers have been diagnosed with two or more chronic conditions, uh, such as like, think about heart disease, kidney disease, diabetes. That's 14% higher than reported back in than reported back in 2015 from the Center for Disease Control and Preventive, uh, CDC is a better way to say it. These chronic conditions contribute to low caregiver life expectancy. I don't want this this episode to freak you out. I want this episode to wake you up and to really get you to think about, you know, your your health is just as important. I was brought to my knees again this past week. And it wasn't my knees. I was brought to my bed again, brought to uh the bathroom again. I ended up with this terrible stomach flu where I couldn't be far from my pillow, far from the bathroom for three straight days. I thought I was being so careful with managing my my new stressful challenge of my mom now starting hospice care. But my take on it, and I've been trying to process it, is that I'm trying to recover still from chronic stress. And I think my body just couldn't fight this new virus. As I laid there trying to recover, I had to give into my thoughts, give into my frustrated. I was beating myself up for just a little bit with those negative thoughts. I was being so emotional because I wanted to go ahead and how could I get sick? I can't get sick during this time. And the same thing happened earlier this year. And I'm thinking, I can't get sick and bring it to my mom either. Or Dennis's immune system isn't totally done. He's only six months into it. So I have to go ahead and do this. And so I had to calm myself down as I'm laying there, so frustrated and trying to rest and really taking it in as a learning lesson again. And I wanted to share some of the learning lessons that went through my head as I laid there, my hair all messed up, me whining like a baby, um, not being able to keep anything down, and sweating profusely, and then chills the next time around. But one of the things I thought about is how could I caregive anyone if I'm not taking care of myself first? I needed the rest and recovery time. My body said, stop. My body said, I have a virus. Stop fighting it and allow your body to fight the virus and then heal. I had to really do this, talk to myself. And then I had to stop pushing myself by saying, Well, maybe if I sleep for an hour, I can get up and I'll be better again. We all have those thoughts, and this is those are optimistic thoughts. But instead saying, I need to recover, sure, I feel a little bit better. And I did, I would feel a little bit better for like five minutes. I get up and I'm like, oh my God, I gotta get back to bed. So yeah, I had to tell my staff, stop pushing it. Allow yourself to rest. And if you want to go ahead and do something, get yourself a book or lay back and listen to some music, just rest. And I know you you and I probably are a lot alike. We want to just keep going. We want to push ourselves, thinking, yeah, it's just all in our head. And I really had to focus in on my health. So that was my first lesson. How could I uh caregive anyone if if I'm not taking care of myself? I know you have to think that way too. Number two lesson is things will just have to wait. Oh my gosh, this is the hardest thing I've ever had to say. Not really the hardest, but it's one of the hardest things I've had to say. Things will just have to wait. This is Kathy, the organized, the disciplined, the focused person that always has to have all of her ducks in a row. But I had to ask myself, what's really important here? My laundry basket full of laundry clothes, because as soon as it hit Friday morning, I couldn't even do anything. I had a laundry basket full of clothes that were clean that needed to be put away. They sat for three days. I just put them away today. And they sat for three days. I kept thinking, I gotta get up and do my podcast. I gotta get up and do my episode for you all. I couldn't. I couldn't. And if I did a podcast, it wouldn't be the best. So why even do a podcast if it's not my best? And I just had to say it'll have to wait. If you follow me on social media or you're waiting for an email, I didn't do one. I just couldn't do it. As a matter of fact, I did get up on Sunday morning thinking, oh, I'm gonna do a few things because if I sit at my desk, I'll feel better. It took me an hour and a half, seriously, an hour and a half to journal, to gratitude, my gratitude journal, because I wanted to sit up and try to do it. I couldn't do it, I needed to rest. My third lesson was what changes could I make to reduce future illnesses? And so I didn't do that until today or you know, yesterday, late yesterday, because I didn't have what was in me. But I had to really think about what have I done in the last few weeks that could have contributed to lowering my immune system. And so I've been processing and rehashing and trying to figure out because I've been trying to really be proactive and trying to up my meditation and up my yoga and trying to focus in on, you know, I take supplements and trying to eat healthy, but I had to really look at my nutrition and my hydration and my sleep. I also figured out was I protecting my loved ones? I because I think I've gotten a lot lax, more laxed. Is it laxer or laxed? I think it's laxed on my habits, but now that my mom's in hospice care, I gotta be even more cautious for myself and for her. And so it's it's back to being the sanitizer queen and the masking mama and all that good stuff again. Am I and then am I taking time for myself? And that's a big no that I can say. I am not taking time for myself. I am, I shouldn't say I'm not taking enough time, quality time for myself. I'm taking these 30 minutes here or 30 minutes here, but am I taking, you know, uh a day or a few hours? And I have to really try to figure out how to do that so that I can go ahead and allow that that that chronic stress to reduce. So that's another lesson. Okay, so number four was I had to look at my overall mindset, taking my body's illness as a signal, not as a punishment. And think about yourself. How frustrated do you get when that migraine sets in, or you pull your back, or you're so fatigued? What do you do? You know, do you take this as a signal or do you or do you get ticked off that it happened? I, you know, I think both is okay, but is it's a signal telling us something? Is it telling us it's okay? You have to slow down. And should your mindset saying, yeah, your body signaling it? So you have to figure out a way to slow down. I had to really also come to a come to a talk to say caregivers are going to get sick. Kathy, you're gonna catch a bug, you're gonna catch a virus, it's inevitable. And so I need to really plan for that and really think through that. And I can't feel guilty for resting when I'm sick. I can't go ahead and lie to myself or others that, oh, I'll be okay, I'm okay. No, it's okay for you to say I'm not feeling well and I need to rest. So that's just another lesson I've learned. And then the fifth one, which we talked about a little bit, is do I have a backup plan? Do I have a backup plan? What if you can't take care of your loved one? What's gonna happen today? What's gonna happen tomorrow? What's gonna happen, you know, the rest of the week? God forbid that something serious would happen to you, but what if something happens to you? What if you got into, and I'm uh please, I'm knocking on wood, a car accident tomorrow? What's gonna happen with your loved one? Have you thought about that? What's gonna happen? So you wanna have some sort of thought in mind. Um, who can fill in for you? That sort of thing. So those were my lessons learned. Number one, how how could I caregive anyone if I don't take care of myself? Uh, number two, let the things wait, prioritize what you need to prioritize. Number three, what changes could I make to reduce this illness and try to prevent it more? Number four, shift my mindset. And number five, backup plan. Well, way too many times I hear my clients, I hear just friends saying things like, there's no one else that can do it. It's only me. And it just kind of makes me think, I've said that before too, but I just want you to take a hard look at yourself and your situation. Really take a hard look at it and your situation. There may be a time where you can't, or it may not even be your fault and and or your choice that you can't. And so you want to just have that in the back of your time mind. A couple of things that you can do if you don't want to go all in right now. Maybe you just want to start one of the things that um that you could do that I've been doing to help pave the way that might be of help is maybe you start thinking about finding your team and thinking of the people that are surrounding you and your loved one as team members. And it's just the little things, finding a team, uh, asking for help, reaching out to a neighbor, friend, or family member. It doesn't have to be these big, extravagant things. It could be as simple as, for example, my mom is in a senior living apartment. But if she's expecting a package today and I know she can't leave her apartment, I could go ahead and reach out to one of her friends when I'm there, knock at their door, or if I have their phone number and saying, Hey, will you do me a favor tomorrow? Can you check a couple times to see if the packaged arrived down in the lobby? And here's my phone number. Give me a call when it arrives. Something as simple as that, or knock on mom's door and give it to her so that she has it. That neighbor is going to, they're more than happy to go ahead and do that. And as a matter of fact, there's a there's a relationship you're building. So if something would happen, you can't get over, I can't get over my mom's, I know that person can be a point of contact that I can go to as I'm building trust with that person. Or let's say somebody has offered to you, um, and I know my like my uh sister-in-law Jody offers it to my mom so much. I'm going to the grocery store. Mom, do you need anything at the grocery store? Well, those are the times where we keep saying no, no, no, no, no. Well, what about saying yes one time? You do need something at the grocery store, or your loved one might need something. When Dennis was going through a stem cell transplant, I started learning to say yes more often and allowing people to go ahead and drop off a meal or send something in the mail. And we started forming this team. So not only think about it as, you know, a nurse or a um a service, you also can think about it as a friend or a family member or something like that. When I wasn't feeling well this past week, thank goodness my spouse was feeling better. So my spouse took on more responsibilities. He did the grocery shopping. As a matter of fact, he texted my mom and asked her how she was doing, which I thought was really cool. And my brother was my point of contact. So he was the one who was in contact with my mom until I felt better. So knock on wood, I'm feeling better. So to make this a short episode today, I thought I would take my experiences today and ask you those hard questions. Do you have a backup plan? What would you do in the event you couldn't take care of your loved one? Who would you who would be your point of contact that you would go to? Because you definitely want to think through those situations. My hope is that you never have to, but just like an emergency plan, like an emergency exit plan for a fire drill or a hurricane or a tornado drill or any situation like that, you have a plan in place. And that plan in place is there physically, financially, emotionally, support-wise, whatever it would be. So hope you enjoyed today's podcast episode. I promise, or I shouldn't say I promise, but I am very optimistic that I'll be back on track again next week. And for those of you who are waiting for posts on social media, I'll be catching up with those this week and getting out an email as well. So I'd love to hear from you. If you've thought about any other thoughts regarding a backup plan, I would love to hear from you. Don't forget, I can be reached at Kathy Lynn Van on Instagram, or you can go to the Caregiver Cup on Facebook. It's a page that I would welcome your comments. We'll talk to you soon. Bye for now.