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.
