Thursday, May 5, 2016

Living With a Spouse Who is Living With a Disability

This picture illustrates how I like to remember my husband, when he had spirit and was in decent health. Zach and I met in 2006, before he took his first decline. Once Upon a Time… we went places on the weekends, we had energy to spare and figuratively, the world was at our fingertips. My children have never known this person. My oldest daughter (Nina, age 8), remembers, at the most, a year or two of who her father was before the severe deterioration began. With the stresses she faces, I don’t believe she remembers that time anymore. As a family, we have been forced to explain the downward spiral of my husband’s health to my children. They are so young, yet they have come to understand that every day we have with their dad is blessed, no matter what activity or lack-thereof occurs.
I have been by Zach’s side every day since we met. In 2007, the symptoms of his illness started slowly with insomnia and sleep deprivation due to discomfort. It directly affected his job to the point that he was almost always late (more than once per week) due in part to sleep dread, anxiety, and pain. At the time, we didn’t understand; this was just the onset of the illness. In 2007, his primary doctor prescribed him Vicodin for his pain. Even with the medication his work was adversely affected. No matter how much he tried to wake up before his deadline, the fatigue caused by his condition interfered with his ability to perform required tasks. Zach went on to work until February 2008, when he was finally forced to resign his position under the threat of being terminated over his late appearances. Within a few months, I was able to locate a job in a climate more beneficial to his health, so we moved to Arizona in May 2008. At this point in time, Zach was barely able to be a stay-at-home parent.
From the start of my instructional design position at the University of Phoenix in Arizona, I had to acknowledge to my work colleagues and boss that my husband had a disability. At that time, it was essential because I would use my lunch break to go home to care for him and our daughter Nina. We were very lucky that our oldest daughter was obedient and independent. I would find him at least once a week, with our daughter preoccupied, still stiff in bed after I had completed an entire 8-hour work day. As his illness progressed, we noticed other side effects such as headaches and iritis. Some side effects, in part, were due to the multitude medications that he was prescribed. In 2009, the headaches became worse and we had to ask our family for help. My husband’s sister, Tessa Williams, came to stay with us for a month to help with watching our daughter because the migraines became so bad that Zach couldn’t be left to care for our daughter on his own. Since we had moved to a house farther away from my job, I was unable to come home and check in as often as I wanted to. Thankfully after some medication changes the migraines got better.
In 2010, Zach’s health took the most significant decline yet. This is when he could no longer care for himself. At the time I had to request my schedule be changed, so that I could take a 2-hour break midway through the day, to be able to go home and help. I started to go in at 6am, drive 30 minutes home, just to deliver his medicines to him. I had roughly an hour to help him take care of our daughter and then drive back to work. Even though this extended my work day, knowing that I delivered the medicine to my husband and had taken care of my daughter’s brunch, I felt a little less anxious about the situation.
In an effort to improve his quality of life, under the recommendation of his physician, he took on an increased risk for cancer by trying several types of injectable biologic medicines know as TNF inhibitors. Unfortunately, none of the injectable biologic medicines improved his condition. He began infusion treatment with remicade. When he began treatment with remicade, Zach received 3 starter infusions over the first 6 weeks—the first at the start of treatment, another 2-weeks later, and one more 4-weeks after that. After the first 3-treatments, he began maintenance dosing, which means he received an infusion once every 6-weeks (as recommended by his physician). Each infusion took 4-to-6 hours to administer and affected Zach’s ability to drive, therefore I was required to drive him both to-and-from the appointments. The remicade infusions helped Zach a lot when he first began the treatment. The infusion helped by reducing the number of days spent primarily in bed from approx. 15 to 10-12 out of 30 days on average. Zach continued the remicade infusion for approximately 18 months. This risky treatment only delayed the progression; it had no impact on daily pain or fatigue levels caused by inflammation. His body rejected the treatment after multiple attempts to reduce effects of the reaction.  His doctor insisted that he discontinue the infusions because the risk of systemic allergic reaction outweighed the benefits of treatment.
In December 2010, my supervisor left and I was assigned a new supervisor and he did not approve of my departure in the afternoon for more than an hour. So as we entered 2011, I had a great deal of anxiety over my husband’s health because I knew that management was not going to support my needs to care for my husband and daughter at a moment’s notice. I spent the next 2 years using all my vacation time (60 hours annually) in half day increments because I had to either go home to take my husband to his infusion appointments or to care for him.
In December 2012, my supervisor terminated me from my position at the University of Phoenix because I no longer had enough vacation time to use to care for Zach. In fact, several of the weeks leading up to being terminated, I had been forced to use unpaid time off in order to care for him. After losing this job, I was not able to regain full-time employment with benefits anywhere because of the amount of time required to care for Zach.
By 2013 and on, I could only participate in employment if it was only a few hours per day (teaching only one or two classes.) I was forced to take a position teaching part-time as an adjunct at Mesa Community College located at Red Mountain because it was only 6 miles from my house and in the event of an emergency, I could cancel class and be at home within minutes. All my other employment is online (work-from-home) contract based jobs. To support my family, I teach for three online colleges (University of Phoenix-online, Brookline College and Valley College.) I am required to complete “daily tasks”, but those “daily tasks” are not associated with a specific time. This unique and tedious schedule enables me to be present for Zach and our children’s needs.
At this point in the progression of Zach’s illness, I had become the receptionist, accountant, and immediate go-to-person for all of Zach’s health needs. This includes, but was not limited to: managing Zach’s medicines - I delivered his prescriptions to him twice per day at the necessary time. I renewed his prescriptions which involved driving to pick up paper prescriptions from the doctor’s office and multiple trips to the pharmacy.  I scheduled/transported him to all of his doctor appointments and necessary treatments (infusions). I completely managed our family financial obligations because any illness flare could interfere with paying a bill on time, so in this sense, I cannot depend on Zach for critical thinking tasks. I also managed our family health insurance, which was/is the Affordable Healthcare Act Marketplace. We are lucky that we have health insurance from the Marketplace, if it wasn’t for the Affordable Healthcare Act my husband would be considered “uninsurable” and the out-of-pocket costs would have already bankrupted our family. Managing my husband’s healthcare needs requires many hours of dedicated time, almost every week.
In the summer of 2014, my husband’s childhood friend, Paul Hrinda, came to live with us to help out with Zach’s declining health and to watch my children in my absence (even though it was only a few hours a day). Both Paul and I were able to alternate our schedules to accommodate having someone at home to care for Zach and the children 24/7.  Even though I was not able to return to full-time work, I was relieved to have someone at my house during the day time hours to watch my children.
So, after reading this – you are probably wondering does Zach ever have a good day? Yes, he does. Typically, 1-to-4 days per month, my husband is able to push through the pain. On these days (since they are so far and few between) my children often overwhelm their dad because they long to play with him and do fun activities. 
I wouldn’t wish this illness on even my worst enemy. In 2004, I lost my mom to terminal cancer. I watched her deteriorate in less than 3 months. At the time, I thought it was the most terrible way to die; To lose your life after battling every day, for just one more day. Now, when I reflect on that event, I realize my mom was lucky to live with a terminal illness for only three months. I have watched the person I love slowly deteriorate into a broken mess of daily prescriptions just to be able to be present a small portion of the day. I can’t shed this deep feeling that I can’t help Zach, other than to deliver his morning medicine to him, so that he might be physically able to get out of bed by at least the afternoon to spend time with his children.
This illness has become the dictator of our way of life. A lifestyle that involves me and another adult caring for my husband’s needs to ensure his survival. This is the sad truth of how we have lived for the past 3 years, moment-to-moment. Every morning, I take Zach his medicine, so he is able to get up physically by the afternoon. I teach one or two (on ground) classes and never leave my home for more than 2 hours, so that I can care for Zach and my children. I struggle to clean my house because it has been years since my husband was capable of doing so. It has been years since he has been able to cook, go shopping for groceries alone, drive any distance above 5 miles and even enjoy a hobby. All of these activities he once was able to do, are now out of the question for him. Zach can't go to the grocery store because he struggles with memory and concentration, due to excruciating pain. Even to get a couple items from the store, it is necessary for him to write them down entirely otherwise he forgets why he went to the store. He struggles to care for his personal hygiene, often only showering once a month. It is very difficult to maintain a conversation with Zach because he loses his train of thought so easily. I do laundry and fold it, because the bending and folding required is too much for him. If I let him try to do these regular chores it leaves him nearly bedridden for days.
I wish for better days, but based on the progression of Zach’s illness, I know I won’t see them. Each day, I pray and teach my children (pictured) to be thankful that their dad is still here even though he is debilitated by ankylosing spondylitis.

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