July 24th

 July 24th, 2023

This date has been like a black hole just hovering ahead of me. It would have been our 30th wedding anniversary if it weren’t for that “until death do us part” clause. 

We hadn’t made any plans. Honestly, I was so weary of the “for worse” and “in sickness” era, I was hoping by July we would be in our “for better” and “in health” era. (I think I have seen too many videos and posts about Taylor Swift's Eras tour!)

The first anniversary without him was going to be hard enough but this one ended in a 0, 30 years is a long time. I stressed about what I would do on this day. At first I researched retreats where I could hide. I was considering a silent one where you stayed in a cabin and they left baskets of bread and cheese outside your door. Then I realized I would have to use an outhouse and that was a big no. Then I looked at spas but honestly that didn’t sound relaxing at all. People suggested a girls’ weekend. But, seriously, I didn’t want to pretend that I was having fun when I wasn’t sure I could have fun.

So I decided what I was going to do. I was going to be sad. And that’s ok.

It is the natural instinct to try and make someone feel happy when they feel sad. But, sometimes you are just sad for a while. I won’t dwell in the sadness forever but I can’t deny I will be sad. I realized making plans to go away was me trying to run away from being sad. 

So, for our anniversary I will go to daily Mass like I usually do in the summer. I noticed earlier in the month that the homeless shelter needed someone to provide dinner on our anniversary so I buying dinner. Then last week I got an email that my lawyer has my will ready to be signed and had appointments available on our anniversary. That made me laugh so I scheduled the appointment. 

I did buy myself a gift. It’s a widow’s bracelet. (I really dislike that name.) I placed Branden’s wedding ring and my 10th anniversary ring in it. It will be a way to honor the 29 ½ years we were married. One day I will be able to focus more on the good memories instead of mourning all the plans that never happened.

This weekend I have been on an emotional roller coaster as I anticipate the dreaded day. I started listening to some Matt Maher as I did stuff around the house. It's interesting how a song you've heard so many times can reach you when you need it. Here's the part that I will cling to this week from Hold Us Together:

This is the first day of the rest of your life
This is the first day of the rest of your life
'Cause even in the dark, you can still see the light
It's gonna be alright, it's gonna be alright

You gotta have faith

      Even though Branden struggled so much the last two years, his faith only got stronger. Once he decided to become Catholic he was fully committed. I had heard about and had witnessed other people going through a spiritual attack as they grew stronger in their faith. I truly think this was happening to Branden the last couple of years. Not that he didn't have medical issues as well, but I feel like he was being distracted from the things that could heal him. 

    The deacon formation program in the Diocese of Belleville is a 5 years process and Branden had completed 4 1/2 years. . He was looking forward to being a deacon. I had asked him multiple times if he wanted to put this process on pause until he felt better, but he wanted to continue. Even though he wasn't ordained a deacon, discerning to become a deacon definitely was not a waste of time. We both learned so much about our faith. He was surrounded by very Godly people who were a huge support. It brought people into my life that continue to support and love me. We are so blessed to know these people. 

    I know there were people that were inspired by something Branden told them about his faith. He liked talking about being Catholic. It's because of him that I am going to get my Masters in Theology.When I married him, I never expected him to become Catholic. I am glad he did because it became an important part of our marriage.

    It's becoming more and more common to not have an affiliation with a church. It makes me sad and I pray for that to change. I would not be able to get through this time of sorrow without clinging to my faith. The world is a crazy place and it can be hard to see the good, but it's there. God is there in the dark times. We just have to seek him and let our hearts be open to him. 

HELP!

     When Branden was in inpatient therapy I had someone ask me what they could do to help a family when there was a crisis. I couldn’t, at the time, articulate what would have helped me. Since Branden’s death I have had wonderful support. My natural instinct is to say that I appreciate the help, but I can handle it on my own. Wisely, I took the advice of a friend and said yes to any help that was offered the past few months. It is alright to need help.
When your spouse is in a mental health crisis, more than likely they are barely taking care of themself let alone meeting anyone else’s needs. While Branden was trying to overcome his problems, I was trying to keep everything else in our life together. It was exhausting and I was not the best version of myself. I had no idea how to ask for help or even how to explain what I needed. I eventually gave up expecting help. I hate to even admit it, but when he went into residential treatment I felt like I could breathe deeply for the first time in almost a year. I knew he was safe. We were blessed that his parents let him stay with them while he attended outpatient therapy. I didn’t like being apart but it gave us both a break to work on ourselves. 

        Often people say, and I know I have said the same thing, “If you need anything just call.” Honestly, how often do we get that phone call? If we are walking by a pond and see someone drowning it would be ridiculous to yell “Let me know if you need help!” We would take action. When we see someone figuratively drowning under the weight of their problems we also need to take action. It's hard for some people to admit they need help.
Everyone’s needs are different but it meant so much to me when someone reached out with a text or an email to say they were praying for me. Branden felt the same way. He needed that encouragement, he needed to know people still cared about him after he admitted he was an alcoholic. I also appreciated those friends who would listen to me as I rambled because sometimes talking through things helps you see the problem more clearly. I didn’t necessarily need advice, I needed to feel safe and supported. 
I admit there is a fine line between helping and enabling a person with addiction and other mental health issues. People like to talk about “tough love”, but I wish we focused more on making sure people know they are loved. Of course, you have to keep yourself physically, mentally, and financially safe. You have to set boundaries. You can’t force a person to become better. But, what is a person’s incentive for getting better if they don’t feel they have anyone to love them? Don’t tolerate bad behavior, but let people know you love them even when they mess up. Clearly explain that even when you are angry with someone, you can still love them. I tried to do this, but I know there were days that I was too stressed to show anyone love. 
If you know someone going through a mental health crisis, pay attention to how often they are getting out of the house and experiencing life. It became normal because of the pandemic for us to spend more time at home. We were still busy with the deacon formation classes and our youngest son's high school activities, but we really didn't do much else even when restrictions started loosening up. It's easy to see now that Branden was isolationg himself. It happened so gradually I didn't fully realize how serious the problem was. Then with Branden being at his parents' house part of the week and complaining of being sick all the time it just became natural that he spent most of his free time at home. Then slowly he was spending more and more time in our bedroom watching TV. I gave up trying to get him to go anywhere thinking that eventually he would feel better. I wish I had tried harder. I wish I would have convinced him to call a friend and just get out of the house more often.
Mental health issues affect the entire family. They need support and love, too. After Branden died, coworkers stepped up and took care of some things for me, without asking, and it made such a difference. You don’t have to make some big grand gesture to ease someone's stress. Offering to drive kids to a sports practice, sending a gift card just because, or offering to babysit so the adults can have some alone time would ease some stress. It was always nice to get out of the house, even if it was for a short time. to have some fun and try and forget the stress waiting for me at home. Any little gesture makes a person feel noticed and heard. 
I obviously don’t have all the answers, otherwise I may not be in this predicament. Although, I have to accept that God knew from the beginning the plans for us, it is easy to look back and wish I had done things differently. I can't change the past. I am striving to use my experiences to be a better friend and advocate. God still has a plan for me and I am trusting in his goodness.

Need to Know Basis

     This blog post has been living in my head for quite a while. I want to strike the right balance. I have written and erased so many paragraphs. How much detail do I give? I want my words to help someone. However, I don't want to reduce Branden to just being remembered for his struggles. I do have to pull back the curtain a bit to make people understand what was happening. 

    Looking back now I can clearly see how Branden's mental illness affected our relationship the entire 30+ years we were together. He had ups and downs and there were years that he was content and he could manage life fairly well. But gradually things started unraveling. There were different stressors starting around the time of the pandemic in 2020 and he started sinking into a dark hole of anxiety. I also believe there was a form of spiritual attack occurring as he grew stronger in his faith through the deacon formation program. 

    Branden was really good at hiding things. When he got really anxious he would just shut down. On the outside it would seem he didn't care, but the truth was he probably cared too much and it was literally eating him up inside. His solution to dealing with life was to go numb. Alcohol helped numb his emotions. He had cut down on his drinking outside the house, he didn’t hang out in bars, but I had no idea how much he drank at night just to sleep. Seriously, he was that good at deflecting and hiding things. 

He finally admitted how much he had been drinking on Christmas Eve 2020. He started seeking professional help in January 2021. There is a serious lack of mental health services in this country especially in a rural area. There is either a waiting list or you’re lucky if a therapist can work you in twice a month. He needed more support than what was available locally. By the Fall he agreed to residential treatment out of town but close to his parents. This led to intensive outpatient therapy a few days a week.  He would stay with his parents on treatment days and come home on the off days. This continued until November 2022 when he decided to get on a waiting list at a local center. When he died in January he was still waiting for an opening. 

While in residential treatment, he was officially diagnosed with anxiety disorder and depression which was of no surprise. Eventually he was also given a PTSD diagnosis. Through therapy he revealed a secret he had buried for nearly 40 years. His parents and I were stunned at the trauma he had hidden. The first treatment center was not addressing the trauma effectively so he started therapy at another center that offered a different approach. Finally revealing the trauma opened up a Pandora’s Box of emotions. No amount of therapy or medication seemed to ease his anxiety, in fact many days he seemed worse. He also started feeling sick all the time and I think the therapists and doctors were so focused on his mental health that they overlooked what eventually killed him. 

       Throughout this process I was out of the loop. I would ask him so many questions about his therapy and appointments. I was keeping a spreadsheet of his medications and all the changes. I was reading and researching. I wanted to talk to his therapists, but that was never encouraged. I wrote letters and shared my journal with his therapists through Branden. They told him they appreciated that. Because of my observations they did change some medications. But, they never reached out to me. It didn't feel like a team effort to help him. I was on the outside but I was the one who knew him, the real him. I was the one who noticed he was losing weight. I was the one who noticed the personality changes. I was the one who had to live with him. I was the one who had known him most of his life. I felt lost and helpless. If he had cancer, I imagine I would have been encouraged to attend appointments.

    I will forever wonder what I could have done differently or what advice I would give people who are struggling with mental illness. As part of the treatment plan, especially the residential placement, there should have been marriage counseling and family therapy offered. The place in Decatur did offer a therapy session over the phone when I asked, not even a Zoom or Google Meet. I declined because it felt so impersonal and weird to be talking to someone I couldn't see about something so personal. With Branden's permission, I wish that the facilities would have called and talked to me to explain the treatment plan or get an insight into the type of support system he had at home. Instead everything was dealt with in isolation. I wish I could have convinced him years ago to start therapy because with more time we may have found the right treatment plan.   

     Mental illness gets more press these days but there is still a stigma. There are still people who think you can just “get over it" and move on, just be happy. You know, just "suck it up" and deny you have feelings. There is a mental illness health crisis in this country, but I don't feel like we know exactly the right approach to living with it, through it, and beyond. I feel like we put a bunch of bandaids on the problem and hope for the best. 

    This isn't easy to write about because I don't want people to think less of Branden because of his mental health struggles. There are so many families struggling silently and that isn't fair. No one should feel ashamed to ask for help. So, if writing about this helps just one person, then I know I have honored Branden's memory. I still wish he was the one writing about this, though.

Communication Breakdown

 Disclaimer: I know many good compasionate people in the medical field. I will not tell them how to do their job. As an educator for 30 years, I know how frustrating it is when everyone seems to be an expert about education and your professional observations are dismissed. But, I digress. Back to talking about healthcare in America. It's a broken system and I don't know how to fix it. 

    During the summer, I go to daily Mass as often as possible. On Thursdays Mass is held in the chapel of our local hospital. It is a beautiful chapel that normally brings me peace. Since Branden's death, I feel unsettled walking into the hospital. I am reminded of the difficulties he faced the past two years. I want to tell his story, but I am unsure of the correct way and just how much I should share. I thought Branden was going to overcome his struggles so that he could help other people with similar issues. That did not happen but I am still here to tell his story.

     Branden was officially diagnosed with clinical depression, anxiety disorder, and PTSD in the fall of 2021. I, with my degree from the medical school of Google, was not surprised by the depression and anxiety diagnosis.  I had diagnosed him years ago. I don't think he was surprised either. Eventually I will find a way to write about his mental health but in this post I want to focus on the physical symptoms he experienced. But, the mental health aspect is an imporatnat part of the story. Because we had a difficult time finding  mental health treatment in Mt. Vernon, he went to both Springfield and Decatur starting in September 2021 for  residential and outpatient treatment. He was able to stay with his parents in Decatur during the outpatient therapy. 

    By January of 2022 Branden was constantly sick, had no energy, and had constant digestive problems. He wasn't eating and was losing weight that he didn't need to lose. In February, after going to his general practitioner, he was admitted to the hospital after blood work showed critically low levels of magnesium, calcium, and potassium. Tests were run, IV fluids were given, and the doctors thought he should probably have a colonoscopy and endoscopy. But, it was the weekend so once his levels were stable they released him and told him to follow up with the GI doctor. 

    Rather than schedule the tests recommended, the GI doctor required that Branden come in for an appointment. So two weeks later Branden goes to an appointment where the PA looks at the chart, asks the same questions that were asked in the hospital, and then schedules the tests for two weeks later. That appointment could have been an email. I don't understand why it was necessary to see Branden in person and delay getting any sort of diagnosis for a month.  After the procedure the doctor said he was happy to report that all seemed normal. When I questioned him on what he thought was causing all the problems he said he didn't know and to schedule a follow up appointment with his associate. The doctor seemed unconcerned. 

    Branden was feeling slightly better but all the medicines they gave him were just treating symptoms. We were no closer to an answer.  Scheduling a follow up appointment took more phone calls and time. There was a miscommunication about the time of the appointment. Branden was told one time but the computer had him scheduled for another time and after having him wait for 40 minutes they told him he would have to reschedule because they didn't have time to see him. Branden did not reschedule, he was done dealing with that office. 

    There were good days and bad days but Branden complained all the time. In the summer of 2022 I wrote a letter to the clinic in Decatur outlining exactly what I was seeing. They changed some of his medications and that seemed to help a little. But, I knew there was still something wrong. I consulted Dr. Google often. I asked Branden after every appointment if there was a new plan or if they had any ideas. I didn't feel like anyone was taking his symptoms serioiusly. I often wondered if Branden communicated just how bad he felt or if he even realized just how different he became during this time.  No one was asking me what I thought and Branden insisted he trusted the people treating him. 

      By Thanksgiving Branden was in bad shape. His mother finally convinced him he needed to call his doctor. He called his primary care doctor the following Monday and asked to be referred to a GI doctor in St. Louis. His doctor asked him to come in the next day for an appointment first and it was then the doctor really understood how seriously ill Branden was. He and Branden realized that what the nurse wrote in his chart didn't exactly convey how Branden felt he described his symptoms. More blood work was done and once again Branden was admitted to the hospital with very critically low potassium on a Wednesday. His calcium and magnesium levels weren't great either. IV fluids and tests again. Even though Branden asked to be referred to St. Louis the local GI doctor convinced Branden to do another test and assured him if he didn't find an answer he would refer him elsewhere. The problem is that on Sunday the hospital released him  because his blood work showed acceptable levels of calcium, magnesium, and potassium. When he asked about the test no one knew anything about it and the GI doctor didn't answer his phone. 

    It took until Wednesday to get answers from the GI doctor's office. The doctor had scheduled the test for the Monday after Branden was released but didn't write the order. Then we found out he was scheduled for another colonoscopy which made no sense to me. Apparently, the insurance company felt the same way and denied the authorization. But, then after the office made some phone calls the test was authorized for the following Friday, almost two weeks after Branden was released from the hospital. It was deja vu when the doctor called my phone while Branden was in recovery to tell me the good news that everything was normal. Had people not been close by my response would have been "No that is not f***ing good news, because I still don't know why the f*** my husband has literally been wasting away for a year." As you can tell, I was fed up and done with dealing with this doctor. It was obvious he didn't remember who Branden was and it was just a routine procedure to him that cost me a $400 copay. 

    The next month was a series of phone calls, lost blood work, wrong blood work completed, and basically no progress. He was told the referral was made but he may not hear anything with the holidays coming up. Then we were dealing with other things with his mental health in January. On January 26th I came home from work to find my husband dead. We had just talked the night before about what he needed to do to get his life back on track. One of those things was to call and find out about the referral to a different GI doctor. Seven weeks after he died the offical autopsy report stated that he died from a ruptured duodenal ulcer.

    So, why did I write this post and what do I want people to take away from it? I wanted to highlight all the  miscommunications and lack of communication that occured throughout our ordeal. The process doesn't flow smoothly in healthcare. You spend so much energy making phone calls and when you're sick you don't feel like making phone calls. I want to encourage people to advocate for yourself and for your loved ones. Even though I did write letters, I never received any feedback directly from the doctor, and I suppose that is to be expected to protect the privacy of a patient. I will always regret not pushing harder for answers or going with him to a few appointments, but I also have accepted that I have no control over life and death. 

    Someone pointed out to me that while dealing with her health problems every time she ended up in our rural hospital it was like they just  put a bandaid on and never took the time to get answers. I am guessing this is because of finances. Maybe it is some effeciency study. Force the patients to spread their insurance money around by referring them to specialists. Of course, I imagine that Branden was asking to go home as quickly as possible during his hsopital stays. It's not like he looked at staying in the hospital like some kind of vacation. 

    I don't know how to fix healthcare in this country but I do have some opinions in general. "Good" healthcare should not be a privilege people get because they have a good job. It should be considered a basic human right. I am tired of seeing GoFundMe pages to help people pay for treatments. Those donations should go towards helping a family cover non-medical expenses when they have a health crisis. Insurance in this country is so unbelievably complicated.  Just like in education, I am tired of people outside of the medical field having so much influence over healthcare. I don't care what letter is behind the polictician's name, most of them are not medical professionals and I am tired of them using healthcare issues to get votes. They will say what they need to say to get party support and to get people to vote for them. It's time we listen to the people actually working with the patients on what is needed instead of the people with political agendas. 

Growth

I received quite a few plants at the funeral and I was determined to keep them alive. I had never had much luck with houseplants, probably due to sporadic watering and lack of research on my part. I downloaded an app and the plants were looking good! Then tragedy struck. My 105 pound big baby of a Labrador/Australian shepherd mix knocked over the plant stand. A Bonsai plant was cracked. I tried to save the branch but it withered within a few days. I cut off the branch and hoped that maybe the root would sprout. I set the plant outside on my kitchen window sill. The other day I noticed a tiny green leaf!

I can relate to this plant. On January 26th my whole life changed when my husband suddenly died. Our future plans vanished like the branch of the Bonsai. Now, I am slowly figuring out my future plans without him. I feel tiny surges of hope as I am growing. I never expected to be a widow at 51 but I know God has plans for me.