On the 23rd it will be one year since my Pop-Pop died. To say we were close would be an understatement. I spent nearly every weekend with him growing up. He and my Nana were beacons of light during a turbulent time. Regardless of what was going on in the less reliable parts of my home life, their little house was an oasis of peace and joy. When I moved away to college and got married, they loved my husband, and I was never honest about the abuse because I didn’t want to show them that I was living what I was living. I felt like a failure, and I also expected my spouse to change. He never did, but I was in so deep it felt like I couldn’t do anything to escape it. I knew they’d be devastated when they found out the news, so I sort of mentally and emotionally shut down. I went on autopilot and figured I had time to come up with a strategy.
In January of last year I was slated for an endoscopy/colonoscopy after a potential bowel obstruction. (The doctor in the ER wrote it off as an impaction, but then gave me instructions on manually fixing it myself. I was so backed up that when I’d arrived I couldn’t even urinate. I was dry heaving and in agony. I talked to a gastroenterologist who reviewed the films and was shocked I hadn’t perforated my bowel. Feeling was that I had a mild blockage, and that my own willingness to do the grossest thing I could think of, was the only thing that kept me from rupturing intestine.) My nausea had been getting worse, as had my abdominal pain, and they really wanted a good look to check for ulcers, so it was time to have my third colonoscopy/endoscopy.
A few days before the procedure my dad called to tell me that my Pop-Pop was sick with pneumonia, or a least that’s what they thought, and had been admitted to the hospital. I asked if I needed to come and skip my procedure, but he said absolutely not. My health was important and they anticipated he’d be released soon. His condition was up and down prior to my procedure, but it wasn’t until the day after that we received the call to come, immediately. It was early in the morning and my husband came in and woke me up. He handed me the phone and my dad told me that my Pop-Pop had fallen in the night. He was on a ventilator, something he hadn’t wanted, but my dad had made the decision to put him on the vent so that everyone could have a chance to say goodbye.
We rushed to say goodbye, but when we got there he was actually improving. I don’t remember how long we stayed, or even where we stayed. I made him smile at one point, despite the ventilator, and it made my Nana so happy. My dad was distraught. He knew my Pop-Pop would hate to be on a breathing machine, there were signs of him hating it already, but there were also signs he was improving. What was meant to be a simple prolonging of life until family from around the globe could say goodbye, turned into potentially saving his life.
At some point we (we being my soon-to-be ex-husband and I) must have returned home. I don’t remember returning home, really, I just know that we hit a point where we had paperwork to sign for a house we were buying, and that it looked like he was doing better, well enough for us to return home for a few days. My father kept asking me before I left if I really thought my Pop-Pop would improve, I was honest, if his kidneys didn’t improve, then he’d need dialysis which he clearly would refuse. If they didn’t improve, it was over. Still, there had been some improvement, mild, but still, and that was something to hope for.
During his entire hospital stay while I was present, I was brought in for rounds with a few of my aunts and my dad. My dad wanted me there for support, but also because I understood the jargon. Despite all of us being some sort of autoimmune patient (most of us anyhow) I was the one with a medical background because of school. I broke things down into simpler terms for my dad, and my Nana, and left out the information that really didn’t matter in terms of what they were needing to know. My dad also said he appreciated that I didn’t bullshit anyone.
My one cousin broke down sobbing, and nearly fainted after seeing him with the tubes. There was a lot of blood (he had a severe nose bleed because of his NG tube), and I took care of her. I sat her down, got her water and cookies from the vending machine, and held her and stroked her hair. I got coffee for aunts and uncles who fell apart. I took care of my Nana, who was stoic, but hurting. I was the one who went in and out of the room with her often, and down to the cafeteria if she needed something. My dad and I took turns caring for her. I hated to leave, but things looked like they were getting better. Knowing my health concerns at the time, my dad told me to go back for my follow-up appointment, and that he’d call if anything changed. It was only 2.5 hours away I could come if I needed to, and quickly.
When the call came there was no chance to say goodbye. He was already gone. I sobbed. I’d cried leaving the hospital the last day, the day that I knew he was teetering on the edge of life and death, but I’d hoped against hope that he would improve, that he would regain kidney function.
I hated that my soon-t0-be ex was going to be one of the people carrying his casket, but my Pop-Pop only knew the good military man I’d let him see. I couldn’t think about those things then, though. All I could do was be there for my family. Aunts and uncles falling apart at losing a parent. My own mind wandering to my dad, and his lupus, hoping against hope I wouldn’t have to face this anytime soon myself. I took my Nana to get her hair done, helped her bake and cook when she wanted to do it to take her mind off being alone for the first time in 62-years. I did whatever I could to help. I made my dad promise that he’d let me know if he needed anything, I was only a couple hours away, and he said thanks, but never really asked for help. I visited a few times, staying with my Nana each time and helping her with errands, but that was it.
When I left my ex in July, I was tormented. Coming back to California meant leaving my dad and Nana in New York, and I knew the burden of making sure Nana was at the bank and church and wherever else she needed to be or go, was falling on him. He has lupus, pretty majorly, and I wanted desperately to make the selfless decision to return to my hometown instead, and care for my Nana. Live in her basement and be the one to take her to church and the grocery store, but I knew I couldn’t. For my sake.
I’d spent years following an abusive spouse around, putting my wants and needs on the back burner, and as my health issues began to really take hold, I was forced to hop from doctor to doctor when we moved. The winter in New York had been brutal for me. I had flare after flare despite medications. I had the flu despite the flu shot, bronchitis, and nearly got pneumonia. My liver function tests were poor, but my doctors were still considering increasing my meds, and possibly adding steroids. The concern was that I was constantly starting to flare towards the end of my Humira injection, which meant the drug wasn’t working to keep my Behcet’s at bay.
My father understood, but it c rushed me. To want to the right thing for family, but feel forced by your body to do the right thing for yourself, is gut wrenching. While my health in California hasn’t exactly been stellar, I know that a lot of what is going on here is stress related. I still may need to increase my Humira dosage, but that’s just part of fighting this kind of condition. Sometimes you feel like you’ve got the other hand, and other times you’re reminded that you don’t.
I live with this fear of my father getting sicker again. He’s done well on his current regimen, but doesn’t always take the best care of himself. If he were hospitalized, I don’t know that anyone else could take care of my Nana the way he does. I would have to drop everything and fly to New York to stay with her and of course be there for him. The thought of him passing before my Nana makes me feel physically ill. There is no question I would need to move in with her, to help her, but at what cost?
In a family plagued by autoimmune conditions, who is the one to fall on the sword? Shouldn’t it be the least sick of us all? We know who that is in our family, but that person won’t step up. They already refuse to help much despite the close proximity, and the fact that my father has health issues while this person does not. (Okay, technically they do, but not like most of us in the family have.)
My dad and I are the same person. We sacrifice because we don’t really know any other way to be. I couldn’t imagine not taking care of my Nana, just as I’m sure he couldn’t imagine not helping her either. Still, the costs are real. The stress and pressure to care for someone else, when you can barely care for yourself, is daunting. We do the right thing because we feel like we don’t have a choice, but we also lament at the loss of our own wellbeing during those periods of time. I know I’ve pushed myself past the breaking point with my ex because I thought I needed to. For him. For my spouse. I did it for someone I stopped loving, out of a sense of duty, so of course I’d be on the first flight if need be, for my Nana.
I try not to dwell on these things. Both my Nana and my dad are doing well, though the harsh winter takes its toll. It’s just hard approaching the one year anniversary, and staring at palm trees. I am where I need to be, for myself, for my physical and mental well being, but it doesn’t mean I don’t have moments of guilt because of it.