So, I have no idea what direction this blog is headed right about now. I have high hopes for it, but then I'm exhausted. I only have one child left homeschooling. The other two have graduated. My youngest is a High School Freshman. so, goodbye littles! Hello online college level courses and very little hands-on from mama.So, I decided to just jot down a few things about how a typical day goes for me.
Things changed for us. Really, starting in 2014 when we left on tour (my husband is a musician). We made it out of our city, driving through the Ferguson area, just hours before protestors shut down the highways over a black man shooting from a white officer. When we arrived at our hotel, we watched the horror unfold in what used to be a city much like Mayberry RFD. I know because my husband grew up there not far from a park where he would ride his bike in the summer and ice skate on the pond in the winter. We weren't at our hotel long before we got news that Robin Williams, comedian/actor, had killed himself. Just maybe a couple days later, we heard the news hat the music store where my husband taught had a car drive through its lobby. It was from a guy who had a diabetic episode of some sort. The impact rested on the outside wall of my husband's studio. All of these news events shook us up.From there, in 2015, the local homeschool co-op had a shake up when one of the teachers/dads was arrested for sexually assaulting his daughter, 13, and a friend of my 13 year old daughter. I don't remember what happened in 2016-2017, maybe they were decently good years. I don't remember. I do know that in 2018, my mom slipped on turkey grease while preparing our family's Thanksgiving meal, hit her head, had three subdural hematomas and a couple weeks later passed away, Dec. 6, right before Christmas. Then in 2019 I got the worst flu I have ever had in my life. It took me probably close to a month to recover from that, and I gave it to my dad whom I had gone to help after my mom's passing. Then, in May, my husband suffered a hemorrhagic stroke leaving him with aphasia, he circumnavigates naming words but is thankfully otherwise good. He still can play music and sing, and he is still who he was before only more frustrated. Then in January of 2020, my dad got pneumonia and was released from the hospital and rehab just about a week before COVID hit. Now, he is sick again and home on hospice care. My siblings and I are caring for him and arranging help to come care for him, and yesterday was a rough day.
In the mix of all of this, my youngest has been struggling the most. She went through depression, anxiety, eating disorder behavior, panic attacks, and we discovered she has myophonia. If you are not aware of what that is, it is essentially an allergy to specific sounds. In her case, the sounds that bother her and send her into a panic attack are the sounds of when my husband and I chew food. So, in order not to traumatize her and send her into a panic attack, we have been eating our meals in a different room where she is not triggered by the sounds.
So, my dad's ordeal began on August 14. My sister randomly texted me asking if I wanted to join her, my other sister, and my dad for lunch at his house. So, I had a ton of writing work to do, but I juggled it around and opened up a few hours to come eat with them. When I got there, however, I was informed that we were making a diversion to the ER. My dad had woke up with swollen ankles, his left ankle and foot was like an elephant foot. It was red and inflamed and painful. He could not walk on it. It took four of us, a neighbor came over, to get him into the car to go to the ER where only one of us could stay with him, and then only one visitor per day due to COVID regulations. This was a Friday. Sunday I got a call from the case worker saying they were planning on releasing him in 2-3 days and all was good. By Monday morning, however, all of that changed. He developed pneumonia, we later found out it was actually pleural effusion from his congestive heart failure, building up causing pressure on his lungs. I didn't like the conversation as she began suggesting palliative care, which I had to look up. It sounded a lot like hospice to me but is basically end of life extended care. I informed my siblings, and I headed out to get my free Walnut Grill birthday meal then to pick up some things from Target. While I'm in Target, I get a group message call from my siblings wanting to decide life and death matters about my dad's Power of Attorney... I could not leave my cart and I didn't want to discuss this in the checkout lane, so I walked around Target trying to find a quiet spot.
There I was in Target, in my mandated mask and sunglasses to protect my eyes, talking on a video call deciding my dad's fate. I looked like a bug on the screen and it was laughable at how ludicrous the situation was. We then learned he was being transferred to the ICU.
My brother and sister in law began their journey from North Carolina, and the rest of us began our journey down to the hospital where they would still only allow one person in to see my dad. At first I was that token visitor. We did a FaceTime call for my brother and other sister to see, and then my sister who was coming from a couple hours north arrived at the hospital and through her tears and upset managed to get approval to be the second visitor to my dad's ICU room.
Right then and there, I somehow was at peace. My dad is 89 years old. He has had congestive heart failure for years, and he lost his wife of more than 65 years. He's questioned why he is still here, and I was at peace letting him go. I mostly wanted him not to suffer needlessly. I thought he was leaving us that night. But, he didn't. The next night after a long day with my sister visiting him, she got ready to leave and my dad grabbed his chest in pain.... Again, I flew down there as fast as I could. But, he quickly recovered when they changed his position on the bed.
So, now I had been down to see my dad on Friday, down to see him in the ICU on Monday and down to see him Tuesday even though that ended up being a meeting with my siblings in front of the hospital and then to eat together. By this time, my brother had made it in from NC, and I knew he wanted time with my dad. Plus, my one sister was in town leaving her husband who needs her help with Parkinson's disease. I knew she wanted more time with dad as well. I still, keep in mind, have a pile of writing work to finish.
Since covid shut downs, I have been trying to generate income for us anyway I can. One way is to take on writing jobs. Just when I got almost more than I could handle, things went downhill with my dad and I was in an on-call stressed state of mind.
I want to be there for my siblings. I want to be there for my dad, but I feel as though my time is not respected by my siblings. It's like I'm the one in town, so I should jump when he needs help. I try to, but I feel like I'm expected to juggle things around in my life as if they aren't important and then judged when I struggle with doing that. I thought this was all in my head, but the occurrences of Sunday made me realize that everything I feared was actually true. During the meeting with the hospice nurse, we were trying to arrange a schedule of care for my dad. The nurse left, and it was my siblings, minus one, plus my sister-in-law. I was chatting with my SIL and I didn't' realize my brother was trying to talk to comprise details of care. All of a sudden, in an angry huff, he threw the notepad and pen flinging past my and his wife's head and started screaming that he was not going to keep trying to talk if we were going to keep interrupting him. So, everyone is under pressure and stress and to a breaking point. But, that spoke so many volumes to me more than just a moment of stress. It was directed at me, and I felt as though 50+ years of angst toward me came out in that moment. I can forgive him and understand that we all act in unforeseen ways when we are under stress. I totally get that. But, this had to be deeper than that. Nobody gets that out of control mad because they are interrupted. It hurt so deep I cannot explain the pain. I felt like, once again, I had dropped everything I was doing to be there when they called. But, my time and me were completely disregarded as unimportant and judged as if I was not giving enough and didn't even care to let him speak. None of which is true. But, I can tell you this. It made me not want to help him one iota. It made me not want to be part of the family at all. It made me feel lower than a worm. He did not apologize to me. His wife insisted on an apology to her, which he disgruntedly gave. But, he did not apologize to me. When I left he was standing in the kitchen angry, it was clear, at me. I do not know what triggers him. I do not know everything I have ever done to him to make him mad. All I know is that it felt like in that moment everything I have ever done to hurt him boiled up, and he had no mercy. Also, there is nothing really that I can do. I can apologize for whatever, but I will need to keep apologizing because he never accepts it from me. None of my siblings, well maybe one, actually even care enough about me to ask and try to understand what my daily life is like. When they do ask, they never understand fully. The only reason I stayed is out of respect for my dad. Once he is gone, I have no intent of retaining a relationship with my brother because it is clear what he thinks of me, and it is clear that nothing will change that short of a miracle or a whole lotta work on my part that I don't have the energy or time to muster. Here's why.
My day to day looks so packed full of emotion. Since my husband's stroke, my youngest has had so much anxiety. It's a good day when she isn't hyperventilating, starving herself, or rolled in a fetal position moaning and crying. This girl was there when my husband was in dire need of medical attention. She helped me get him to the car and waved goodbye to us thinking she would never see her dad again. Every time she walks through our front door, she panics. Every night she relives the trauma in nightmares. She is working hard to overcome this agony, but she is under attack and it's a struggle. We learned through it all that she developed mysophonia which triggers panic attacks. Basically, she lives in a vicious circle as if enemy troops surround her constantly waiting to move in for the kill. My older daughter through all of this was entering a relationship with who will most likely be her husband one day. She handles stress by retreating. My son just turned 20 and is in an entirely other crisis trying to make something of his life. All three of them are trying to adult and find out who they are in the midst of almost losing their dad. Now, I am losing my dad. We just don't know if it will be weeks or years. Thankfully, as my husband recovered he was able to play music again. But, he was not allowed to drive for 6 months. So, that meant I became chauffer and roadie and booking agent. I had a year's worth of gigs set up and covid hit shutting down every place where he plays. Try rebuilding, reconnecting to a world that is now a chaotic mess for everyone and your child is like a time bomb of stress waiting to break out in a panic with your every chew or movement. This is my life for the past year as we move forward.
Through all of this, I have felt alone. I often asked who is here to hold me together? Now, with my dad in need of constant care, I once again feel like even my support crew doesn't really support me. They don't even care enough to understand what a day in the life of me looks like.
so, here goes:
I woke up at 5:04 - pray - then get my communion and coffee and begin to try to write. By 7 or 8 just when I have plunged into writing, at least one child or hubby wakes up and now my concentration is diverted. Maybe I've made a sale on eBay or the MArketplace or Poshmark, and I need to package that item up or get it ready to set out for pickup. This does not include all of the bill pay arrangements and medical bills and insurance calls and emails and arrangements, and prayer. I don't usually even eat breakfast until close to 11 and lunch is often pushed up to 2 or 3. I try to hit the treadmill when I can, and I have a basement that is pleading with me to declutter it. Meanwhile, I have a stack of ebay and Poshmark merchandise that seems to be in a constant state of disarray. I most likely end up heading to the grocery store to pick up something I have forgotten to get. Oh, yeah, and in the midst of it, my one daughter went on a special diet for candida. So, special meal prep for her after my other daughter went off of being gluten free which is still baffling but I'm not going to complain that she now has more meal options. My days are busy and full, I am never bored. But, I constantly feel the need to generate more income so I can pay off our debts and move on with spending quality time with my kids who are rapidly growing and getting ready to leave the nest. This is by no means a detailed description, but perhaps a good enough overview to get the idea of how many balls I have up in the air juggling and how many directions I am torn.
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