There is nothing dignifying about fighting cancer. If you
have never had the privilege of being a caregiver to someone who is in the end
stages of cancer, this post may be hard to read. If you HAVE had that
privilege, you know what a sacred time it is to spend time with your loved one,
while they slowly watch their dignity slip away and people look on with pity.
It is a bonding experience and a time when you get to love unconditionally. I
remember watching my mom gently wipe my dad’s forehead and bend over to kiss
his swollen eyes and that image is what I think of when I hear the words “unconditional
love”. Knowing their history and everything they had gone through, made that
moment even tenderer to witness.
But let me back up to the beginning of the end….
My dad’s fight started with surgery, followed almost immediately
with radiation. He lost two patches of hair on the back of his head, so he
looked kind of funny because of where the hair fell out. Then he started chemo
and he looked like he had died, but that’s because chemo is poison. In order to
have any chance of saving him, they had to poison him until he almost died and
then they stopped… for a while… then they did it all over again… and again and
again. He was ready for the zombie apocalypse…
and then the rest of his hair fell out.
He took steroids to reduce the inflammation of the tumor which causes the fat in your body to move around and become
displaced. This is sometimes called Moon Face, when the fat from the lower part
of the body moves to the upper part of the body, causing it to be swollen. It
is ironic that a side effect of a medication that reduces inflammation is …
inflammation!
My dad was no exception and when this happened, it created
pressure in his eyes. He was one of the lucky ones because at first, only one
eye was affected and so he got to wear a patch over that eye. Eventually, both
eyes became so swollen that he couldn't see anything. Another fun side
effect from Moon Face, was that the lower part of his body became so weak that
it could no longer support the added weight from the fat that had shifted to the
upper part of the body. When that happened, his new constant companion was a
walker. And he got to enjoy having a potty chair next to his bed because he couldn’t move himself much farther than that. Finally his strength deteriorated enough that he had to have
home health come in and bath him, because he no longer had the strength to get
out of bed.
Nope… nothing
dignifying about it!
He had to choose between excruciating pain from the tumor growing in his head and drugs that
made him hallucinate… ok, so maybe the drugs that make you hallucinate might
not be so bad to endure… LOL…. Like when dad imagined a herd of squirrels
running through the living room early one morning. Mom had my brothers hide the
shotguns after that imaginary event, but it was certainly something to laugh
at, otherwise you might just breakdown because it’s so hard to watch a loved
one live this way. Most days he didn’t know what was real and what was
imaginary. I mentioned in a previous post about our time together playing
cards. I remember many times playing cards with him and he would say things
that didn’t make any sense. One time he told someone to leave him alone because
he was busy playing cards. When we asked who he was talking to, he replied “grandma”.
We laughed it off and told him that “grandma” wasn’t there, assuming that he
was talking about his own mother who frequently participated in our card games.
Looking back, I believe that it was not MY grandma who was nearby, it was
probably HIS. I believe that the morphine made his mind more open to
experiences that maybe we were not privy to and that his time on earth was
drawing to a close and the veil between this life and the next was a little
thinner for him. This is the type of sacred experience that I was talking about
when I mentioned that is was ‘privilege’
to be a care giver and to be able to witness these special moments. This has taught me to be more open minded
about what is going on around me. There are things that I may not be able to
see with my mortal eyes, but that I can feel with my heart if I allow those
moments to penetrate my busy life. It’s important to enjoy the solitude and
listen with our hearts or we will miss those moments when the veil is thin.
One thing that was important to dad was to laugh about
things and not let some of these challenges get the best of him. He tried to
maintain a “positive mental attitude” about his situation. Many times my mom, who was more in touch with
the reality of the situation, told him where he could put his PMA…LOL! When he
was first diagnosed, he was given 6 weeks to live, but he defied the doctors by
living for another 10 months! He believed that he could mentally heal himself
by remaining positive about his situation. I believe that he probably could have
too… if it had been God’s will that he remain on earth. But that was not to be.
He may not have healed himself, but I firmly believe that his attitude allowed
his body to decay more slowly, which gave him more time here with his family.
Dad liked to joke around
about his ‘radiation head’ by telling people that my mom tried to iron the back
of his head and burned off all his hair, since the bald spots somewhat
resembled the shape of an iron.
He also had a favorite shirt that he wore ALL the time. It was
very tattered and had a white paint splatter on the front. He liked to tell
people that a bird pooped on him. I guess when you have no dignity
left, things like that help to give one a little humor in a very somber
situation.
He told my kids many wild stories about the “pirate patch”
he wore over one eye. Derrek was his first grandchild and his little buddy, so when he started having trouble talking, he developed a system of communication with Derrek that he referred to as the ‘buddy
sign’. It was giving the thumbs up signal. At first Derrek was not very coordinated and it was more often the thumbs sideways signal! Every couple of weeks when we
would go to Bear Lake to spend time with my dad, the first thing he did when he
saw Derrek was ask him to give him the buddy sign and 3 year old Derrek would quickly respond with an enthusiastic thumbs up! When communication became
difficult, we all adopted the ‘buddy sign’. This was our way of letting each other know that we were doing ok. We even used this when it was just too difficult emotionally to speak. A simple buddy sign would let each other know, without the need for words that all would be ok.
Since he wasn’t able to work, he was home all day, while my
mom went to work. He tried to do things to help out around the house, like wash
the dishes… keep in mind that this was a chore, since they didn’t own a
dishwasher. One day, he got frustrated because he always had to wash so many
cups each day, so he set aside one cup for each member of the household, and
then put the rest of the glasses in the house, in a laundry basket, and hid
them! He didn’t think this was funny, but everyone else sure did. Come to find
out, dishes were never his strong suit. When he and mom were first married, she
was still finishing school so it was his job to do the dishes. His idea of
cleaning up the kitchen was to just HIDE all the dirty dishes from her!
When it became difficult for him to move about the house, my
mom gave him a bell, so he could ring it if he needed help with something. Sometimes
he would ring it just to see how quickly she would come running to his side. It
became a way for her to bribe him into good behavior (ok maybe threaten is a
better word)… if he didn’t do what he was supposed to do, she could simply hide
the bell!
Through all of this, dad taught us by example, that laughter
is the best medicine… laughter is the way that you maintain your dignity
through all of life’s experiences. That lesson has spilled over to many facets
of my life and I have tried to remember when I find myself in a really
stressful situation, to find some humor. I guess that is how I developed my
love for retelling events in a very humorous way. His positive attitude and example
have helped me to develop a unique way of looking at things. Sometimes I need
to be reminded, especially when I am in the heat of the moment, but mostly I try
to emulate his attitude and look for the humor in every situation and most
importantly take time to laugh!
I really believe that laughter helps our memory. As I
reflect back on memories of my sister’s life, the most vivid memories I have of
her were times when we were laughing (either with her or at her, but definitely
laughing!)
Laughing is a positive, healthy way to get rid of some of
the stress and emotion that builds up in your body. There were many times when we
reached the point that we were forced to find a release to that emotion and we
could laugh or we could cry. Looking back on the cancer journey, most of my
memories were times when we were laughing. I can only remember two times when I
really cried... When we were walking through the hospital after they took him
in for the initial surgery and I watched my mom collapse on the floor in the
hallway under the gravity of the situation and the second was when I held his
hand while he took his last breath. The first were tears of fear… fear of the
unknown and what the future would hold. The latter were tears of relief, that
his pain was over and his spirit was no longer trapped in a diseased, bed
ridden body. I know that there were many, many other times I cried, but those
are not the memories that stick with me. The moments I remember most are the
ones where we found the humor in the situation.
Laughter truly is good medicine!
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