It's been awhile since I've blogged. It's funny, but when I take too much time between writing I feel really rusty, and I have the hardest time making my words match the thoughts and emotions in my head and heart. I get frustrated with the process, and I end up abandoning the writing, setting up a cycle that makes it to where I never actually sit down and write ... and this topic was important enough to me that I didn't want to flub it up. I have low expectations in myself today, but after waiting forever to finally say anything, I think it's finally time. Fingers crossed that I do my thoughts ... and my mom ... justice. I should probably apologize, though, to all those people who started following my blog because you were hoping for more awesome commentary on Sanditon. This writing is going back to my personal roots, but we saved our show (sans Sidney or Young Stringer or Babbington #tears), so it's all good, right?
My mom died last year on August 27, 2020. It was her 53rd anniversary. I thought she would live forever. Her body was the healthiest body I have ever seen. Her mind? Not so much. I don't think I ever saw her really sick a day of my life, but her mental illness made life a challenge for the last 25 years of her life. A challenge for her. A challenge for us. It was the absolute worst, and as complicated as it made life, it made processing her death almost as complicated for me. It has taken me forever to actually get a handle on all my thoughts and feelings, but I'm going to give it a go.
My mom was extraordinary in so many ways. She had a big heart and wanted to change the world in some small sort of way. She was a huge advocate for foster care and adoption. She and my dad adopted three boys throughout the course of their marriage and fostered a few children along the way as well. She worked with the Missouri Foster Care and Adoption Association, and for a time in the 1980s was in charge of their newsletter in a time where she didn't have access to a nice computer to make the job easier. She typed and formatted it all by hand and then worked to distribute it throughout the state. She once said that she wished that she had a way to adopt all of the children who were listed on the state's adoption availability rosters. Like I say ... extraordinary. She loved to bike, and I think that she was the driving force behind our family long distance bike rides of my youth. I think that she also was the brains behind creating a back yard skating rink for our family each year. The 1980s must have been WAY colder than today because I don't think that would work with the warmer Missouri weather these days. Speaking of brains ... as our family size increased, we needed a bigger house. I guess we could have bought a new house, but my parents liked their house, so they decided to just rip off the roof, raise it up a few feet, and add four rooms and a bathroom to what had been an attic. Most people would contract that out, but not my parents. My dad told me that my mom found some sort of book that explained what to do, made the calculations in her head, and then directed the work that our family completed when I was in junior high. Amazing.
But here's the thing. Lots of kids have complicated relationships with their parents during the stretching and growing years of their teens and early adulthood. I had that with my mom. It took me a bit of time to figure out who I was and how I wanted to interact with the world around me. My mom tried to guide me as best as she could, and I often was hesitant to take her advice, to put it mildly. We clashed a bit during the process. That's normal, right? But after those growing years lots of kids get the opportunity to form an improved and deeper relationship with their parents as adults. They begin to see some of the wisdom of their ways as they navigate their own paths through adulthood. Suddenly parenting decisions that seemed so punitive or restrictive when we were kids make perfect sense when we are parents ourselves. We get it. Finally. But I never got that opportunity with my mom. I never got the chance to ever really sit down with her and ask her to share her ideas about parenting as I raised my own children. I never got to really hear her share her fun life history stories with my children or me. Instead, I felt like within the space of only a few years I was thrust into the role of a parent for my parent, and, sadly, my mom was not so enthusiastic about that role reversal. She did not take my assistance kindly, and it made the last years of her life a mirror image of my teen years, except this time around it was my mom who held the role of obstinate and rebellious child, and I was the frustrated parent.
After I had left home and started my own family my mom had a mental breakdown. I think it was precipitated by my grandmother dying. My mom sunk into a deep depression as she worked to process my grandmother's death, and it ended up sending her over the edge. She stopped sleeping, and pretty soon her depression turned into the mania of bi-polar depression. Looking back, I wish that we had realized what was going on as it happened, but my family had never really seen mental illness up close before. We had no idea what was going on. We just thought that she needed more sleep. We didn't realize that some sort of switch had been set off in her head, and life would never be the same again. If you've never seen a person in full blown mania, you can have no idea how crazy it is. When my mom was in the midst of these episodes I would often call her "the woman who lives in my mom's body" because her personality was so different than what it normally was. Her facial expressions even changed to where she looked different too. Freaky. In the beginning my mom refused to believe that she had actually been crazy, and she harbored a good amount of anger toward my dad, Herman, and me for putting her into a mental hospital after that first manic attack. She would not take medication or see a psychiatrist. Outside of all the anger, she did get better, and life got back to a relative normal. That lasted a couple of years, but then she had another episode. This time we had a better idea what to do, but it was still awful. Luckily, she eventually admitted that she had a problem and started taking medication, which is its own sort of awful. Thus began a cycle of manic attacks where we needed to hospitalize my mom, followed by several months of medication induced stupor, followed by several months of mostly normal. Rinse. Repeat. For years and years and years.
In the final years of my mom's life, normal days were hard to come by. The cycles between manic episodes came faster and faster. There were fewer moments of normal. The medications were stronger and stronger. The medical care was worse and worse. I am convinced that one quack of a psychiatrist gave her a stroke by performing a shock therapy on her, but instead of doing it every other day as prescribed, he decided to speed up the process so that he could send her home from the mental hospital sooner. She collapsed, had a seizure, and because they only saw her as a mental patient, they never treated her with the level of care that they would give to the average older patient. They never looked to see what caused the seizure, and it was only a year later that we found out that she had had a seizure from another horrible "specialist" who brazenly told my dad and me that she "had a hole in her head that had been there awhile." Not the way you expect to hear that your mom had had a stroke. Anyway, since that moment my mom was never quite the same. She struggled with communication, and her mental episodes were almost constant. During these episodes she felt as if she was perfectly fine. We were the ones who were in the wrong. She was particularly angry with me after we decided that the best course for my parents was to move them closer to me. She loved her Carrollton home, and she didn't want to move, and she especially didn't want to move close to us. She made life fairly difficult for me and my family as we tried to help, but it was nothing compared to how difficult life became for my dad. She could be so hateful to him as he cared for her. She couldn't see what he was doing to help, and she was a stubborn and obstinate patient for him. But they made things work. Dad had the patience of a saint and continued to care for her whether she wanted him to do it or not. There were moments of fun and happiness sprinkled among the hard. They just came less and less as the years went on.
Everything completely changed in 2020 right about the time that Covid started spreading through the country. Mom had a manic episode right at the beginning of the pandemic when hospitals were locking down, and visitors were not allowed. We didn't want to put Mom into a mental hospital at this time because we were convinced that we would never see her again if we managed to get her in, and that was only if we managed to find a hospital who would admit her. She had a primary care physician who had a good relationship with me, so when I explained the situation, her doctor went ahead and did a medication adjustment for her to hopefully help her avoid hospitalization. Luckily, we didn't end up needing to hospitalize her, but soon after things calmed down she stopped walking. We have no idea what caused this. Doctors didn't know either, and because of the pandemic issues we were not able to really get her any specialized care at the time. Dad was using a wheelchair and a Hoyer lift to help her get around the house. As she stopped walking her legs began to atrophy, making it almost a given that she would not be walking ever again. That summer Herman and I went to Washington to visit Laney and Ryan, and while we were there Mom had something happen where Dad worried about her and ended up calling the ambulance to take her to the hospital in Lebanon. They hospitalized her, not ever actually diagnosing her with an actual diagnosis. But as she was there she wouldn't eat at all. They didn't want to release her until they knew that she could eat. I got back from Washington and came down to visit her in the ICU. She had been sleeping most of the day, but when I got there she managed to wake up a bit. I think she might have recognized me, but it was obvious that she was not doing well. She was repeating a phrase over and over and over, and the gist of it was that she was totally, totally, totally over all this. I was a bit freaked out about the experience. After a week of being in the ICU they finally released her with the recommendation that we seek out long term care for her. Well, at the time nursing homes were totally locked down. If we managed to find a spot for her we knew that we would not be able to visit her, and there was a high probability that she might die alone in there. Plus, my mom in better days expressed her feelings that she REALLY did not want to go to a nursing home, and I was sure that she would find a way to haunt me from the grave if I made the decision to send her to one for the last moments of her life. So she stayed home, and we did the best we could to care for her. She barely ate at all. Dad tried everything to help her to eat more, but she wouldn't do it. We took her to her doctor to see what she could do, and we talked about inserting a feeding tube to help her. At this point my mom was not communicating at all, but as we talked with the doctor about the feeding tube she got very agitated and looked like she was trying to jump out of her wheelchair. I became convinced that she knew exactly what we were talking about, and she was using all her power to try and let us know that she was not interested in a feeding tube. So we dithered a bit in our decision.
Soon the decision became moot. On the evening of August 26th Spencer called me from my dad's house, saying that I needed to come look at my mom. Spencer and my dad were worried about her. She was making a weird yawning movement and sound every few minutes, and her muscles had gone completely slack. We brought over our pulse oximeter, and her oxygen levels were pretty low. Her breathing became slower and less frequent, and it was obvious that she was dying. She stayed with us until right after midnight, on her anniversary day. I am convinced that my mom decided to take control of her own destiny in as much as she was able, and she offered this one last act of love to my father who was unable to let her go on his own. He was in the process of doing whatever it took to keep her with him, and she knew that if he did that, it would make life incredibly difficult for him and tragic for her, so she made the decision to go out on her own terms. Or at least that's what I've told myself, and it gives me some degree of peace to think that's how everything went down that day.
So that's a long, but shorter than it could have been, explanation of how I have ended up struggling with how to process my feelings about my mom's death. It's been a journey, and I don't quite think I'm through it yet, but I'm getting there. This past month my feelings and thoughts have been close to the surface, and I finally started to see that it's taken a long bit, but I have been slowly working my way through the stages of grief. I don't think I've ever really experienced profound grief in my life, for some reason. Maybe it's because I park myself in the 'denial' stage of life and never move forward. I don't know. All I know is that this time around I can truly see myself working through the process, and it's been cathartic. So here's my journey, as best as I can explain it:
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Mom and Dad pre-kids. Weren't they cute?
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DENIAL
I spent A LONG time stuck in this phase, and I don't think I really saw that I was here. It is a strange feeling when someone dies who has been struggling for so long. My mom's struggles were somewhat unique because there were times when she thought life was AMAZING during her mania, but it made our lives a bit of a living hell. Then, toward the end of her life, my dad was spending all of his time caring for her. It was draining for him, but he didn't really complain at all. It was a living example of what it means to love someone 'until death do us part.' I'm sure that if my mom could express anything at all, she would not have wanted to live this way as such a burden on all of us. So when she died it was almost like a weight had been lifted from all of our shoulders ... and it felt awful to feel RELIEF at the loss. But that's how it felt, so I spent a good portion of time replacing that relief with numbness. I just didn't think about it. It was weirdly easy because during the last few months of Mom's life she did not interact with us much at all. She was often still asleep when I would come over in the morning, so it was easy to almost imagine that she was still sleeping in her bed while I was there. I spent so much time worrying about my dad and my brother and how they were coping that I never really allowed myself to think about what I was feeling.
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My mom loved biking.
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ANGER
Anger. Boy, howdy, did I have some anger to burn. And still have anger. Who am I angry with? Who am I NOT angry with? I will say that, first and foremost, I have an eternal anger toward the mental health system in the United States. My anger knows no bounds, and until you have seen the process firsthand, you can have no idea how dysfunctional it is. First of all, they can't decide if they want to treat mental health as a medical problem or as a criminal problem. The first time that we took my mom to the hospital we had no idea what to do. We ended up taking her to the emergency room at North Kansas City Hospital. I will never forget that experience as my dad, Herman, my uncle, and my brother, James, carried my mom screaming through a packed emergency room while I sat at the admitting desk to sign her in. Oh how the people in that room laughed and laughed at the sight while I silently cursed each of them. I'm just grateful that this was before the age of cell phone videos or I'm sure my mom would have gone viral. I can't remember if this was the time that she ended up being admitted to a mental hospital in St. Joseph. They all blend together. But that was one of her first hospital experiences, and they treated her like a common criminal. It takes a court order to admit someone to a mental hospital if they do not sign themselves in, and I get why that is. There would be a whole other box of problems if we could just willy nilly sign people into institutions without having to prove that they belong there. But in this particular instance for some reason they shackled the mental patients together and marched them into a courtroom for hearings about whether they needed to stay there or not. In shackles!!!! It tore my dad apart to see my mom like this, and even though she probably needed extra time to heal in the hospital, he would not have it. He demanded that they release her. This happened all the time. He would see them treating her like a criminal, and he would decide that no matter how hard it was for him to help her, it was better for her to be home than treated like a criminal.
I also noticed that mental hospitals seem to cater to drug addicts more than severe bi-polar patients like my mom. Drug addicts are calmer and easier to manage. My mom was a holy handful whenever she was in the hospital. They didn't want her there. They didn't like her there. And other than massive amounts of sedatives, they really weren't interested in helping her improve. I will say that many of the nurses who work in these hospitals are total saints. What a hard job to have! They were the ones who shouldered the burden of caring for people like my mom. The doctors? I'd love to say that they were super hands-on in their treatment of my mom, but they barely were present, popping in once in awhile to increase the drugs, but doing little else. One exception was one time at the University of Columbia when there was a doctor who took a particular interest in her case and spent tons of time trying to see if he could pinpoint the best way to help her. I wish all were like that.
Speaking of psychiatrists and my anger ... I went to a couple of psych appointments with my mom, and I left seething each time. We would show up and find a waiting room full of patients. Full. I would guess that each time there were at least 20 people waiting to see the one doctor. They would call my mom in and ask her how she was doing. She got five minutes. He looked at her medication list, made changes without explaining why, and sent her on her way. Grrrrr! This got worse and worse as she got older. If she was a young adult suffering as she was, I would like to think that they would work harder to help her manage her mania and depression, but as an elderly woman they seemed to just count it as par for the course. So much medication. So little counseling. And not enough time to really explore the underlying problems that might be causing her to struggle.
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These are all the medications left over after my mom died. These are the ones she DIDN'T take. The doctors often seemed to think that the only answer was complete stupor. Frustration can't begin to explain how I feel about this.
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I was angry about the pandemic, upset at the disruption of services that might have led to a different outcome for my mom. I spend a good amount of time wondering if it was my fault that we didn't get the right sort of help for her as she needed it in that last few months of her life. I would get angry at the people who would complain about dumb things that they didn't get to do because of pandemic restrictions, when there were real world consequences that actually mattered in life and were hurting my family.
I don't think I ever allowed myself to get angry at God. I wasn't going to go there. But I did feel a bit robbed. That's been the feeling that I've been battling for the last few months. Every once in awhile I would see a facebook post from someone talking about missing a mother who had died or expressing gratitude for their relationship with their mom, and it would send me into this funk of feelings that was hard to manage. I am angry because I never got the chance to know my mom as an adult. I never got the chance to tell her that I was sorry for being such a butt as an adolescent. I'm sorry that I didn't let her do more for me as I was getting married. I'm sorry I didn't visit more often or call more often or have the chance to ask her about the things she liked best in the world. I never got the chance to see her thrive as a grandparent. I was upset that I didn't do more as she was dying to help her feel comfort and love. I was full of regrets. I missed everything, and it seemed so unfair. I would try to get through those feelings by thinking about all the ways it could have been worse, and then I felt terrible for thinking that. I read an article about the stages of grief, and they said that anger is just an expression of the intensity of your love as you experience grief, so that makes me feel a little better about all my feelings.
And I think that led me into the next stage of grief ...
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My mom and dad with me as a newborn.
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This is my mom with my brother, Bryan, after picking him up at the airport. He had flown all the way from Vietnam to be part of our family. That's why he looks so tired. I love this picture.
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BARGAINING
At first I didn't think that I did any bargaining in this travel through the stages of grief. What exactly would I be bargaining for? But I have learned that bargaining can involve a lot of 'what if' statements. What if we had recognized my mom's mental imbalance early enough that we could have headed off the worst of the mania in the very beginning? What if we had found a better doctor to treat her? What if we had been more forceful in demanding that she receive better care from an often indifferent set of medical professionals? What if Covid had never happened and we had felt better about getting her in-hospital care? What if? What if? What if? And those are just the what ifs dealing with her medical condition. There are a whole lot of what ifs that surround wishes for the chance to relive life as an adult with a mom who can help me navigate all the mysteries of parenting. Hoping for more chances to just change things and make it all better. But that's not the way life works, and that's not the hand we were dealt here. I've been hanging out in this spot of the grieving process for the past several months. It's a tough spot to be in because there isn't a lot to do about it. You can't go back and fix the past, so there's no way to find a satisfactory resolution to the problem. That leads to the next stage ...
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Hanging out in my dad's uniform as he prepared to serve in Vietnam.
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DEPRESSION
I think this month is the first time that my mom's death really hit me. It seems crazy to think that it took 16 months to get to this stage. Shouldn't that have happened last year? Thinking so much about the what ifs led me to feel intense sadness that my mom is gone. I've been looking at old pictures and seeing all the good things about my mom that was lost in those years where she suffered so much from mental problems. It had been so easy to forget the woman behind the disease, and now that I was remembering the good times of her life and our family life it made me incredibly sad for the moments we will never be able to experience. As Savannah had her baby this October I thought about how much my mom would have loved to hold her first great-grandbaby, and that made me super sad. But luckily, for some reason, this saddest of the stages of grief didn't end up lasting very long for me. I think that is because in the midst of this sadness I was able to focus on eternity a bit and think about rewards waiting for my mom in heaven. I thought about opportunities yet to come and that has finally led me on the way to ...
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My family. I think this was right before Bryan and I graduated from high school.
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My mom enjoying being a grandma. I think that this was in one of the good periods of time after her first mental breakdown.
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ACCEPTANCE
I don't know if you ever really get to a total acceptance after a loss, but I feel like I am in a good place. I had the opportunity this week to attend the temple with my family. We were the only people there, and the wonderful temple president and his wife gave us as much time as we needed inside. I took some time to say a few things to my mom out loud ... things that had been bumping along in my head for awhile, but things I never really said out loud. I said all the things I wished I had said while she was alive. I took some time to offer all those regrets I had been feeling. I took some time to reflect on who she would have been if the effects of mental illness hadn't destroyed any opportunity for her to live her final years as she would have chosen to do. And I ended up feeling a tremendous feeling of peace as I sat alone and spoke those words aloud. I'm not sure if it was forgiveness I felt. I'm not exactly sure that that was even what I needed in that moment. I guess what I felt with such intensity was a feeling that this life is not the end for us. It's not the end for any of us. There is hope in this gospel, and that hope is the realization that we will not suffer the infirmities of life forever, and one day we will all have the opportunity to see our loved ones again. They will know us, and we will know them, and all those things that seem so hard and difficult about this life will have melted away, leaving only our love behind. How cool is that? I am eternally grateful for the peace that understanding gives me in my life.
It's been a complicated life with my mom ... well, not the early years. The early years were fairly ordinary ones with the sort of ups and downs that come with living in a family. The later years were hard. I'm not going to lie about that. But that difficulty wasn't my mom's fault. It just happened through no fault of any of us. You can't control lots of diseases and infirmities that happen to us, and mental illness is no different. But despite the hard times I have never, ever wished to have a different life or a different mom. She was a woman who quietly went through life trying to make the world a better place. No one is going to write stories about the things she did. No one would ever recognize those good works. She may not have mattered to the world, but she mattered to me, and I cannot wait for the opportunity to know her again in the eternities, finally as the people we were always meant to be.
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Mom and Dad (and Hank) hanging out together right before she took a turn for the worst in 2020. |
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Below you can watch a video of the finale of the slideshow that I made for my mom's funeral. This is mostly focused on the last few years of her life, but I like it a bunch, and I love the message of the song.
(The video is too large to embed, so here's the link:)
https://www.youtube.com/watch?v=XxNi5nwH1NU
And if this whole focus on grief has bummed you out (I hope that didn't happen), feel free to check out a couple of my lighter posts. Click HERE to read about JoJo's lovely poem about the murder of our pet goat or click HERE to read about my disagreement with the result of my buzzfeed quiz about which Disney couple Herman and I are most like. I forget sometimes how much I love to write. Maybe I'll try to do it more often.