This
has been such a crappy year (and, yes, I realize it is only half-way over!). I am wishing so hard it would be 2019 that I
actually have written that down when dating a document or logging Robert’s
vitals.
2019
cannot come fast enough.
Anyone
who knows me knows I do not like to be negative or whiny or mopey or depressed or
wallowing in self-pity but I have seen all of that in myself this year. To make matters (and my mood) worse, I kick
myself for not immediately seeing the “bright side” or the “miracles” in a
situation (or several situations, also known as 2018).
Sometimes
life is just a crapfest.
Caregivers
know this yet we get kind of stuck in a bad mental cycle. As one of 44 million caregivers, I know there
are others with much worse situations than mine. That feeds into my mindset that I “should” be
able to be more positive. Not to mention
I am a positive person and get frustrated when I lose that piece of
myself.
Caregivers
also know how difficult it is to continue to talk about everything going
on. I get tripped up when people ask me
if things are going better. No, not
yet. They really aren’t. We have a lot going on and some of it is not
better. I want to say things are better and HURRAY life is looking up but
find myself apologizing for things not being better! Holy cow, sometimes things are not getting
better; much of what we deal with are chronic conditions that are not going to
get better.
Sometimes
life just sucks.
When
things are really terrible or continue to not be better, co-workers and the
cashier at the grocery store don’t want to hear that. Even some family tires of the near constant
updates of hospital stays, non-healing wounds, seizure clusters, surgeries and
whatever else might come up. Ongoing
crap makes people uncomfortable.
Sure,
to the cashier and some co-workers I will say everything is fine (ha! Isn’t
that the standard line for caregivers?)
To friends and family, sometimes the best I can muster is “things are
stable.” And that’s only if they
are! That could be for the hour, the day
or, if we’re lucky, for a week.
Who
wants to hear that? People want to hear
that you are better! Life is on the
upswing! We want roses, puppies,
unicorns and rainbows!
Believe
me, that’s what I want to say. I really
do want things to be excellent and happy and carefree!
For
caregivers (and I would venture to actually say “for anyone”) that isn’t always
possible. Not all the time, anyway.
Sometimes
life piles on.
It
has taken me a lot of extra effort to be able to see that, yes, we have had
many miracles in the midst of this challenging, difficult, crappy year.
Our
miracles? We have had plenty.
Just
this year, Robert has been in the hospital multiple times for the flu, pneumonia,
sepsis, a respiratory virus and a five day video EEG study which turned into a
week-long stay when his seizures caused aspiration pneumonitis. He could have succumbed to sepsis or gone into
status epilepticus but Robert pulls out miracles all the time. This year has been no different.
Richard
has had two skin grafts and an intrathecal pump replacement, broken finger and
expects to have another skin graft this summer.
Richard’s initial skin graft was mostly successful and it is only the
last 10% that we’re trying to get healed.
His leg pain has diminished greatly and that, in itself, is a miracle.
Carol
has been hospitalized for pneumonia and a fall and has been teetering on the
edge with extremely low blood pressure, a wildly varying pulse and water retention
and an INR number that jumps around more than it should. She has lived with us since last November and
having her around has been its own kind of miracle.
Even
our nineteen year old Shih Tzu has had a couple of strokes and, at one point,
didn’t appear to be able to last through the night. She has recovered and is back to her feisty ways. A miracle is the only way to describe that
feat. I am convinced she still hates me
but miracles can only go so far.
Throw
in my own emergency room visit and follow up appointments and scans for
TIA-like symptoms and then getting side-swiped by a semi-truck and I have much
to be grateful for. Adding an aspirin
and cholesterol medication to my daily regimen has stopped the scary stroke
symptoms and the whole semi-truck incident is nothing short of a miracle
itself. Robert and I had no injuries and
my car is still drivable. You would
never guess from the damage that it was caused by a wayward truck driver. Volkswagen (and our angels) for the win!
Despite
finally being able to see and appreciate the miracles, my stress level is at
maximum capacity. All these situations
come with a lot of expense, more doctor appointments, more medications to track
and take up a great deal of time.
Call
me a wimp but I am ready for a break.
I
know that for things to change, I need to make changes. That is not to say Robert’s seizures will
stop or Richard’s leg will magically heal because those are things we do not
have control over. What I can change is what
I do for me so I can better handle the stress of this difficult year. Even the phrase “self-care” makes me cringe
sometimes but I know that’s exactly what I need. Getting a pedicure with my daughter doesn’t stop
Robert’s seizures or Richard’s pain or a truck from driving into my lane while I
am still there but it does give me an hour to recharge, laugh and get some
pretty toes and relaxed feet.
Planning
a cruise with Richard for our 20th anniversary is not going to take
away the stress of whether his leg is ever going to heal but it will give us
some time to focus on something other than the day to day doctor appointments,
upcoming surgeries and caregiving responsibilities. (By the way, our 20th anniversary
was last year but caregivers have to be flexible. In our minds, it is still our 20th
anniversary celebration!)
Even
seriously considering a schedule change at work becomes more of a priority for
me in order to reduce my overload of stress.
I cannot continue to beat myself up for trying to successfully work a
difficult job and be a compassionate caregiver and feel like I am failing. When I am losing patience with actual nice
people at work and at home, something needs to change.
I
cannot lose who I am because of the stress of a difficult year and being an
impatient, cranky madwoman is not who I am.
Change must happen because I am not going to lose myself to worry and
stress.
It
might take a miracle for change to happen but sometimes we have to create our
own miracles and that is my plan for the second half of this crappy year.
Bring
on the miracles!
