The Juxtaposition of Caregiving
Life has been really great lately! Theo's health is improving and he is learning new things! I have been able to start thinking of more than just the daily tasks and reflecting over the past little while. So here are a few things about my role as a caregiver that I would like to share.
Just over 3 years ago, I was preparing to move to NYC. I had my apartment deposit and first month's rent paid. I already enrolled in my classes to attend Teachers College Columbia University to receive a Masters in International Education Development with an emphasis on Policy Analysis (my dream!). I had my scholarships, money saved, and student loan in place. I felt ready to take on the world! I was ready to be the person I always wanted to be, travel to developing countries and advocate for quality education for all. Well, Travis and I starting to become more than friends, but it was just for the summer. As we got more serious, and we realized how perfect we were for each other, we made a plan for him to come to NYC for medical school when he graduated the next year. Within a few weeks of heading out to New York, I decided to stay in Provo and continue teaching high school math with the plan to start at Columbia a year later when Travis graduated from BYU. Travis and I talked many hours about our future plans and decided to get married in the fall. Everything felt so right, even though my plans were changing quickly.
As our engagement continued, Travis progressively was more and more tired all the time. He would have me call him to wake him up to go to work, school, church... A few times, he couldn't even wake up until 5pm and still felt tired. I started calling doctors, making appointments, researching...we both were trying to figure it out, but nothing helped (medication, exercise, going to sleep early). As I was getting ready the morning of our wedding day, I had to wake him up. On our weekend honeymoon, he slept and slept and slept. I read books, wrote in my journal, went on a walk... already worried about my husband from day 1. Long story short, Travis's health continued to derail with constant ticks, twitches, stuttering, insomnia, shortness of breath, loss of memory, brain fog...He was on multiple medications, seeing multiple doctors, and honestly couldn't take care of himself. My life quickly took a turn too. I didn't have time for friends. My life was taking care of my husband. I didn't mind it though, he needed me. Of course I am willing to sacrifice anything and everything for the one I love. Thus began my life as a caregiver. It felt like a tornado ripped through my life and I was reaching for something, anything to anchor myself to. There was no training program or class, I was just to figure it out...the med schedule, the appointments, remembering the doctors thoughts to this mystery...I was just winging it. I was overwhelmed and uneducated with the situation we were in. We had good days and bad days, but the mystery of his health condition and the fact that he continued to get worse, made the stress build and build...
I felt panic, like I couldn't handle the situation a second longer. I had to remind myself to physically breath.
I felt guilt, like it was my fault or that I wasn't tending to all of his needs. I knew there must be something more I could do to relieve his pain. I also felt guilt for doing something for myself instead of staying by his side. I seriously never left his side. I didn't exercise, I didn't eat well, I didn't spend time with friends.
I felt anxious, like worrying that I couldn't be awake enough in the middle of the night when his body would twitch uncontrollably.
I felt denial or some would say "over-optimistic," like "It can't get any worse, tomorrow will be better!" "We can only go up from here." "The next doctor will figure it out, I know it."
I then felt irritable and anger (probably from being over-optimistic), like "It is all that doctor's fault!" "No one actually cares!" "I can't stand for one more thing to go wrong."
I felt utterly, and completely exhausted.
I started to feel numb and helpless. I didn't feel like anything was going to change. I felt like I couldn't make a decision about anything.
...These feelings were awful. Once I started to get panic attacks, I realized I needed some help. I saw a doctor and started depression medication, which actually helped me have more energy and continue what I felt I needed to do, give all my energy into taking care of Travis.
My job, my family, my dream, myself... it all took the backburner. I knew that it wasn't healthy for me, but it was only temporary until Travis got better, which I knew would be any day (again, over-optimistic).
I started falling apart in other ways. I was physically, mentally, and emotionally drained. I tried seeing a therapist, but nothing helped. She kept saying that I needed to do something I enjoyed, but I didn't enjoy anything anymore. Besides, Travis needed me and I was too exhausted. We got take out dinner almost every night. I didn't do the dishes or laundry until absolutely necessary. We watched Netflix for hours every night, because we were both just too tired, depressed and anxious.
I kept telling myself that if I give my best, the Lord will make up the difference. That is how it works. There is no such thing as giving too much, right? So I took it a day at a time, day after day, week after week, month after month. Not exercising. Not eating right. Not caring about myself or the way I looked. Not caring about anything but Travis. At least he was taken care of, right?
Travis constantly praised my efforts, appreciated and respected me deeply (still does ;). He desperately tried to get me out with friends or go do something fun. I just never felt right about doing it. I would tell him I am too tired, but I really just felt guilty about leaving him.
Travis would have small moments of giving up, but overall, each day he would still try his best to do what he could. Doctor after doctor had someone else they wanted him to see, because they didn't want to deal with his medical issues. He took a small break from BYU, but class by class he was able to graduate from BYU, only one year later than planned.
Travis was accepted to the PhD program in Biophysics at The Ohio State University without even filling out an application. He met a professor at a Biophysics conference in Los Angeles, and he was impressed with Travis and his research. It seemed like a perfect opportunity, we just needed to get Travis better. I spent countless hours researching the possibilities of the chronic illness plaguing my husband's life, but never found the perfect answer.
It took months to get into the Mayo Clinic, but we had hope they would help. After a week, spending the rest of our savings, the doctors came to the conclusion that he had chronic fatigue syndrome and a functional movement disorder. The treatment is working through behavior therapy with a psychologist. I remember asking the neurologist, "so how long of behavior therapy would he need to not have his symptoms, and have his life back??" He said, "Oh, 6 weeks to few months, behavior therapy is very beneficial." My hope was instantly gone. He didn't know that we had worked with 3 psychologists already, and not a single one cared to work with Travis's condition, they all said it was medical.
The day after we got back from the Mayo Clinic, we were getting ready to move to Ohio and I had my anatomy ultrasound to make sure our little 18-week fetus was healthy. We unexpectedly found out that our baby was not healthy. He had several markers of Down syndrome, one of which he needed open heart surgery to repair. In shock, we travelled to Ohio, far away from family, to start this new adventure.
As Travis started his PhD program, he had good days and bad days, and was able to make it through his classes and research rotations. Unfortunately, the behavior therapist that took months to see, told us that this was a medical issue and she didn't need to see him...SOUND FAMILIAR. We gave up on trying at this point. Travis toughed it out as much as he could, but his exhaustion was never-ending and my pregnancy was rough. We did our best to take care of each other.
Once we had Theo, I didn't know what to do. Travis did have his good days, but the bad days were hardest on me. I was a caregiver for two. I was worried deeply about both my husband and my baby. I remember one day (Feb 12th) being in the ICU with Theo and worrying the crap about Travis because he wasn't doing well at home and wasn't well enough to drive. I remember praying to know what to do because I couldn't be two places at once. This is the hardest life has ever gotten for me. I remember thinking that day: How am I supposed to take care of Theo and Travis when I can't even take care of myself? Coming to this realization, I met with the psychologist, Nicole, in the Heart Center at Nationwide Children's Hospital. She couldn't believe that, in our situation, no one in 3 years, has been willing to work with Travis. Nicole has worked with Travis and myself to help us take the steps to not just survive each day, but to enjoy life again.
Caregiving has cost me time, money, opportunities, social life, and my health. The stress and worries bring extra burdens. I felt like I couldn't develop my own talents and abilities. My aspirations require time I didn't have, as well as emotional, spiritual, and physical strength that I have far since drained. What was I to do?
I feel like I have come a long way in my thoughts of what I need to be and what I need to do to care for Travis, Theo, and myself since Feb 12th. But I am still learning. I need to try to find the right balance in my life. I went from all about me moving to NYC, to all about Travis's health in just a few short months. I want to find a balance. I need to find a balance. I finally get it. I don't need to give up everything. I shouldn't give up everything. Travis and Theo both have needs, but I have needs too.
Lately, Travis can function on his own despite the constant fatigue, brain fog, twitches, etc. I am so impressed by his endurance, love, and ability to always find something to be grateful for. Fortunately, he has more good days than bad days now! I still have moments of wanting to do EVERYTHING for Travis, but quickly remember he is better than he used to be. I have started exercising, I have started making quick healthy meals, spend more time with friends, we don't watch TV every night, we play games, read books and listen to music together. AND I enjoy it. I am starting an online Masters of Education in Instructional Design in September, which I feel is the perfect program for me. I feel like I am starting to be my own person again.
I am writing this to explain that there are better ways to give care, than to sacrifice yourself completely. I could have cared for Travis without giving up my life. Now that I can see past just surviving, I see the importance of caring with wisdom, and I could have allowed Travis to do as much as he can on his own and not just doing everything that Travis might want or need. I see the key to caring with renewed energy comes from exercise, healthy food, taking breaks, and enjoying others company, not from staying by his side constantly. Rather than always being focused on the health issues, laughter and love can continue to be the priority of our relationship.
Just over 3 years ago, I was preparing to move to NYC. I had my apartment deposit and first month's rent paid. I already enrolled in my classes to attend Teachers College Columbia University to receive a Masters in International Education Development with an emphasis on Policy Analysis (my dream!). I had my scholarships, money saved, and student loan in place. I felt ready to take on the world! I was ready to be the person I always wanted to be, travel to developing countries and advocate for quality education for all. Well, Travis and I starting to become more than friends, but it was just for the summer. As we got more serious, and we realized how perfect we were for each other, we made a plan for him to come to NYC for medical school when he graduated the next year. Within a few weeks of heading out to New York, I decided to stay in Provo and continue teaching high school math with the plan to start at Columbia a year later when Travis graduated from BYU. Travis and I talked many hours about our future plans and decided to get married in the fall. Everything felt so right, even though my plans were changing quickly.
As our engagement continued, Travis progressively was more and more tired all the time. He would have me call him to wake him up to go to work, school, church... A few times, he couldn't even wake up until 5pm and still felt tired. I started calling doctors, making appointments, researching...we both were trying to figure it out, but nothing helped (medication, exercise, going to sleep early). As I was getting ready the morning of our wedding day, I had to wake him up. On our weekend honeymoon, he slept and slept and slept. I read books, wrote in my journal, went on a walk... already worried about my husband from day 1. Long story short, Travis's health continued to derail with constant ticks, twitches, stuttering, insomnia, shortness of breath, loss of memory, brain fog...He was on multiple medications, seeing multiple doctors, and honestly couldn't take care of himself. My life quickly took a turn too. I didn't have time for friends. My life was taking care of my husband. I didn't mind it though, he needed me. Of course I am willing to sacrifice anything and everything for the one I love. Thus began my life as a caregiver. It felt like a tornado ripped through my life and I was reaching for something, anything to anchor myself to. There was no training program or class, I was just to figure it out...the med schedule, the appointments, remembering the doctors thoughts to this mystery...I was just winging it. I was overwhelmed and uneducated with the situation we were in. We had good days and bad days, but the mystery of his health condition and the fact that he continued to get worse, made the stress build and build...
I felt panic, like I couldn't handle the situation a second longer. I had to remind myself to physically breath.
I felt guilt, like it was my fault or that I wasn't tending to all of his needs. I knew there must be something more I could do to relieve his pain. I also felt guilt for doing something for myself instead of staying by his side. I seriously never left his side. I didn't exercise, I didn't eat well, I didn't spend time with friends.
I felt anxious, like worrying that I couldn't be awake enough in the middle of the night when his body would twitch uncontrollably.
I felt denial or some would say "over-optimistic," like "It can't get any worse, tomorrow will be better!" "We can only go up from here." "The next doctor will figure it out, I know it."
I then felt irritable and anger (probably from being over-optimistic), like "It is all that doctor's fault!" "No one actually cares!" "I can't stand for one more thing to go wrong."
I felt utterly, and completely exhausted.
I started to feel numb and helpless. I didn't feel like anything was going to change. I felt like I couldn't make a decision about anything.
...These feelings were awful. Once I started to get panic attacks, I realized I needed some help. I saw a doctor and started depression medication, which actually helped me have more energy and continue what I felt I needed to do, give all my energy into taking care of Travis.
My job, my family, my dream, myself... it all took the backburner. I knew that it wasn't healthy for me, but it was only temporary until Travis got better, which I knew would be any day (again, over-optimistic).
I started falling apart in other ways. I was physically, mentally, and emotionally drained. I tried seeing a therapist, but nothing helped. She kept saying that I needed to do something I enjoyed, but I didn't enjoy anything anymore. Besides, Travis needed me and I was too exhausted. We got take out dinner almost every night. I didn't do the dishes or laundry until absolutely necessary. We watched Netflix for hours every night, because we were both just too tired, depressed and anxious.
I kept telling myself that if I give my best, the Lord will make up the difference. That is how it works. There is no such thing as giving too much, right? So I took it a day at a time, day after day, week after week, month after month. Not exercising. Not eating right. Not caring about myself or the way I looked. Not caring about anything but Travis. At least he was taken care of, right?
Travis constantly praised my efforts, appreciated and respected me deeply (still does ;). He desperately tried to get me out with friends or go do something fun. I just never felt right about doing it. I would tell him I am too tired, but I really just felt guilty about leaving him.
Travis would have small moments of giving up, but overall, each day he would still try his best to do what he could. Doctor after doctor had someone else they wanted him to see, because they didn't want to deal with his medical issues. He took a small break from BYU, but class by class he was able to graduate from BYU, only one year later than planned.
Travis was accepted to the PhD program in Biophysics at The Ohio State University without even filling out an application. He met a professor at a Biophysics conference in Los Angeles, and he was impressed with Travis and his research. It seemed like a perfect opportunity, we just needed to get Travis better. I spent countless hours researching the possibilities of the chronic illness plaguing my husband's life, but never found the perfect answer.
It took months to get into the Mayo Clinic, but we had hope they would help. After a week, spending the rest of our savings, the doctors came to the conclusion that he had chronic fatigue syndrome and a functional movement disorder. The treatment is working through behavior therapy with a psychologist. I remember asking the neurologist, "so how long of behavior therapy would he need to not have his symptoms, and have his life back??" He said, "Oh, 6 weeks to few months, behavior therapy is very beneficial." My hope was instantly gone. He didn't know that we had worked with 3 psychologists already, and not a single one cared to work with Travis's condition, they all said it was medical.
The day after we got back from the Mayo Clinic, we were getting ready to move to Ohio and I had my anatomy ultrasound to make sure our little 18-week fetus was healthy. We unexpectedly found out that our baby was not healthy. He had several markers of Down syndrome, one of which he needed open heart surgery to repair. In shock, we travelled to Ohio, far away from family, to start this new adventure.
As Travis started his PhD program, he had good days and bad days, and was able to make it through his classes and research rotations. Unfortunately, the behavior therapist that took months to see, told us that this was a medical issue and she didn't need to see him...SOUND FAMILIAR. We gave up on trying at this point. Travis toughed it out as much as he could, but his exhaustion was never-ending and my pregnancy was rough. We did our best to take care of each other.
Once we had Theo, I didn't know what to do. Travis did have his good days, but the bad days were hardest on me. I was a caregiver for two. I was worried deeply about both my husband and my baby. I remember one day (Feb 12th) being in the ICU with Theo and worrying the crap about Travis because he wasn't doing well at home and wasn't well enough to drive. I remember praying to know what to do because I couldn't be two places at once. This is the hardest life has ever gotten for me. I remember thinking that day: How am I supposed to take care of Theo and Travis when I can't even take care of myself? Coming to this realization, I met with the psychologist, Nicole, in the Heart Center at Nationwide Children's Hospital. She couldn't believe that, in our situation, no one in 3 years, has been willing to work with Travis. Nicole has worked with Travis and myself to help us take the steps to not just survive each day, but to enjoy life again.
Caregiving has cost me time, money, opportunities, social life, and my health. The stress and worries bring extra burdens. I felt like I couldn't develop my own talents and abilities. My aspirations require time I didn't have, as well as emotional, spiritual, and physical strength that I have far since drained. What was I to do?
I feel like I have come a long way in my thoughts of what I need to be and what I need to do to care for Travis, Theo, and myself since Feb 12th. But I am still learning. I need to try to find the right balance in my life. I went from all about me moving to NYC, to all about Travis's health in just a few short months. I want to find a balance. I need to find a balance. I finally get it. I don't need to give up everything. I shouldn't give up everything. Travis and Theo both have needs, but I have needs too.
Lately, Travis can function on his own despite the constant fatigue, brain fog, twitches, etc. I am so impressed by his endurance, love, and ability to always find something to be grateful for. Fortunately, he has more good days than bad days now! I still have moments of wanting to do EVERYTHING for Travis, but quickly remember he is better than he used to be. I have started exercising, I have started making quick healthy meals, spend more time with friends, we don't watch TV every night, we play games, read books and listen to music together. AND I enjoy it. I am starting an online Masters of Education in Instructional Design in September, which I feel is the perfect program for me. I feel like I am starting to be my own person again.
I am writing this to explain that there are better ways to give care, than to sacrifice yourself completely. I could have cared for Travis without giving up my life. Now that I can see past just surviving, I see the importance of caring with wisdom, and I could have allowed Travis to do as much as he can on his own and not just doing everything that Travis might want or need. I see the key to caring with renewed energy comes from exercise, healthy food, taking breaks, and enjoying others company, not from staying by his side constantly. Rather than always being focused on the health issues, laughter and love can continue to be the priority of our relationship.
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