Part Two: Caregivers Need Caregivers
Caregiving is one of the most difficult, selfless, rewarding things that a person can experience in their lifetime. Putting another person’s needs above your own while simultaneously rearranging your life can quickly become overwhelming, exhausting, and at times, incredibly frustrating. If you want to avoid caregiver burnout, you need to have a plan AND a posse.
For a few months after my dad was diagnosed with esophageal cancer, I felt like I had an unlimited supply of energy for him. He was pre-diabetic right after I moved back from CO, so that was my first task to tackle. Becoming diabetic would have made his healing potential decrease exponentially. I should also mention that sugar feeds cancer, so having an excessive amount of it in the body is asking for trouble. For those of you who are curious about the idea of sugar feeding cancer, this is exactly how a PET scan works. The patient is told to refrain from eating high amounts of carbohydrates (sugars) for a day or two before the scan. On the day of the scan, they are injected with glucose (sugar), and the PET scan shows where that glucose is being metabolized. Some areas of the body will naturally “light up” on a PET scan, such as the brain, but anything outside of the norm is a red flag for cancerous activity. If you eat a bunch of carbs before a PET scan, you may miss cancerous areas because the cancer is not starved and desperate for glucose.
Anyway, sorry for the tangent. We got my dad’s blood glucose under control within two months, and his A1C went from a 6.5 to a 5.4. He also lost 30 pounds and was feeling great, despite radiation and chemotherapy. He maintained a decently healthy diet throughout treatment because we were prepping his body for a big battle. You don’t eat a bunch of fast food if you want to be in fighting shape. He was on board with this lifestyle-overhaul, with the exception of an occasional slushy or ice cream. He always loved sweets, and I really can’t blame him because I inherited that trait, too.
These first few months consisted of a flood of responsibility that we never had before. My mom was the administrative wizard, making sure we were at every scheduled appointment early and at the right place. I am not good at this, and there is no way I could have juggled his new schedule on top of being his personal health coach. He would have died pretty quickly if it were all up to me, because I hardly know what day of the week it is and I’m terrible at writing things down, so we would have been missing critical appointments.
My mom planned. She did what I couldn’t bring myself to do, and that was the planning. She had the heart-wrenching, undeniable conversations about my dad’s plans for end of life, and I am 1000% sure that she is the strongest woman on the face of this earth for being able to do that. I spoke with my dad about how he wanted his treatment to be handled, and if he had a point in mind that would make him want to stop fighting, but I could NEVER talk to him about his final resting place or his death wishes. In my mind, dying from cancer wasn’t an option.
In an effort to spare ourselves from becoming too emotional (because once my dad and I became too emotional, we could no longer be rational), our conversations were short and direct. I would ask, “Do you want to be resuscitated? Do you trust me to help make decisions about your care? Do you want to die at home if you have the choice?” And that was that. We took a 30-minute walk together and never talked about any of that again. It would have crushed any and all of my optimism if I had to get into details with him because I was so fragile about it. If it wasn’t for my mom having the courage to have those conversations, none of my family would have had the amount of peace we had when we said our final goodbye. Every single one of us knew that we did it the way he would have wanted, and we were able to honor him in such an incredible way before he took his last breath. A lack of planning leads to a lack of confidence and peace, and my mom knew that long before I did.
My brother, John, did a different kind of planning. He spent months getting everything sorted out and planned financially, so we could make a smoother transition into life without our dad. They own a few properties, and the business needed to be streamlined so my mom would not run into issues later on. He was also a great source of emotional support for my mom and myself. We became a team of people who were determined to take care of my father, regardless of what was thrown our way. The amount of combined stubbornness and tenacity that the four of us had was nothing short of record-breaking, and we were able to care for my dad in such a comprehensive way because of it.
My boyfriend, Mac, made it possible for me to keep my shit (somewhat) together. He came into my life as things started getting really hard for my dad. I don’t have enough fingers and toes to count how many times I sobbed all over him, desperately begging for things to turn around. When my dad was diagnosed with a malignant pleural effusion, I knew that was a sign of the end coming. Most people last for about three months after diagnosis. I had just worked a night shift and I wanted to go directly to the ER to meet my parents after my dad complained of having trouble breathing. Mac didn’t want me to drive myself because I was so tired, so he changed his plans so he could make sure I got there safely. When he picked me up a few hours later, I cried so hard that my eyes were nearly swollen shut. It was that kind of cry that is congested, snotty, and ugly. On the way home, he stopped at a gas station for tissues. No judgement, no words of encouragement. Just support. That is exactly what I needed, because any encouragement felt like a blatant lie to me at this point. I knew where my dad was headed, and I could barely handle it.
During the last week of my dad’s life, Mac commuted to O’Fallon every day to make sure we had what we needed. Sometimes, he brought dinner. Other times, he brought wine. One of the best nights was when my mom, my brother, my aunts, Mac, and myself (and the dogs), all sat around my dad and looked through hundreds of pictures. We went through 3-4 bottles of wine and my aunts don’t even drink. Neither do the dogs. I couldn’t have been as brave if it wasn’t for Mac and his quiet, unwavering love. He wasn’t scared to be near my dad as his health deteriorated, and he wasn’t afraid to be a part of our family during some of the worst days of our lives.
My friends were gold. Whether it was offering a listening ear, sending a care package, or just sending a loving text, they supported me with so much love and compassion. When Pam came to visit me for a few days, we spent one of our mornings with my dad at his chemo appointment. She made my dad laugh, and he took a two hour nap while we caught up on life. She never complained about spending part of her “vacation” at the hospital with my sick father, and her humor and positivity made him feel so good. We are so grateful for every person who made him feel good during that year of hell, because that’s all we really wanted. We just wanted him to feel good - physically, emotionally, and spiritually.
Our nurses and techs were unparalleled. We had one nurse in particular, Debbie, while my dad was in the ICU after his esophagogastrectomy. She was hilarious, vivacious, and she took ZERO shit from anyone. She could get my dad to “behave” even while he was delirious, and I actually watched her dive into action to keep my dad from coding when his blood pressure plummeted to a measly 65/35 from his average 105/65 in a matter of minutes. She was a badass. She also let me help my dad, which was so huge for me. She taught me how to suction while my dad had an NG tube (I was too scared to accidentally bump it or hurt him), and how to be confident around a million cords and machines. She even called me at the end of every shift to give me a report on how he was doing, even though I was only gone for a few hours to sleep or to shower. The ICU kind of feels like being in a spaceship, and it’s hard to keep track of time. Debbie made it so much more bearable for all of us, and she also made my dad feel better about being in her care because she was so funny and energetic. We are all very grateful for that.
During my dad’s last stay at a hospital after he suffered a stroke and heart attack, we had a tech that we will never forget. My dad was unable to speak, and he was trying to use body language to tell us when he needed something. It was like having to learn a new language, and watching him struggle to maintain his independence was one of the most painful things for me to witness.
Our tech’s name was Taylor, and she balanced having several other patients while delivering exceptional care to my father. He needed assistance with everything, but most of all, he needed patience. From my personal experience as a tech on a busy floor, I will say that patience is one of the hardest things to practice when you’re trying to get in and out of a room so you can continue care for everyone else that you are assigned to. Taylor made us feel like we were her only assignment. It was a night shift, and the tech that was going to take over for her in the morning called in sick, so it was just going to be the nurses for four hours until another tech could come in. Taylor volunteered to stay for the extra four hours, totaling a 16-hour shift to ensure that my dad received the care he needed. I couldn’t believe that she would volunteer for that, but I was so appreciative because I needed the help, too. I couldn’t reposition him alone, and I needed help with getting him situated when he needed to use the bathroom because he began losing control over the entire right side of his body.
The next day, we had a new tech who was wonderful. As we made plans for my dad to be transported home via ambulance so he could enter hospice care, Taylor came back in her street clothes -on her day off- to say goodbye to our family. We all cried, including my dad, who reached for Taylor’s face and cradled it in his hands. Taylor cried, too. We all knew this would be the last time we saw her, and my dad desperately wanted her to know that he knew she went above and beyond for him, and that she changed his life in his final days on Earth.
One of the last nurses my dad had was Michelle. She is a hospice nurse, and she admitted my dad on Friday night. Michelle had a very interesting approach to nursing. While she was undoubtably competent from a clinical perspective, she was also warm. She wanted to know my dad as a person so she could care for him effectively. Maybe, she wanted to know about him so she could care for us, too. Michelle came to the house at 1am on Thursday, August 2nd, to listen to my dad’s heart one last time. She stayed for more than an hour while the funeral home director came to pick him up, and we sat at the kitchen table in disbelief and relief…relief that he was no longer struggling to live. He finally had some peace after everything he went through during the last 16 months of his life. She helped us recognize the peace that accompanies a person who is able to die with dignity and compassion.
My point is this: every caregiver needs a caregiver from time to time. I was fortunate to have several throughout my experience caring for my dad, and I could have never done it alone without jeopardizing the quality of care he received. If it wasn’t for the amazing nurses at work who taught me little tricks and tips for certain situations, I wouldn’t have had the confidence to be his primary caregiver. If it wasn’t for my amazing CNA instructor and her solid, old-school advice on how to be an effective caregiver (ahem…all you have to do is CARE!), I wouldn’t be able to forgive myself for taking necessary breaks to recharge and reset. If it wasn’t for the wonderful hospice nurses who taught me how to help my father die without feeling the insurmountable guilt that comes with not being able to save him, I would have crumbled from the weight of it all. If it wasn’t for my mom and brother holding down the fort and taking care of everything else, I wouldn’t have been able to focus enough of my attention on my dad’s health. And if it wasn’t for our irreplaceable network of friends, family, and neighbors, we would have been screwed from the start.
I miss him every single day, and I’m forever grateful for all of the wonderful people in our lives.