When the World Shrinks to Just One Room
Added: Tue. Jan 15, 2013 8:20pm
Posted in: Caregivers
“Sometimes all we need is a little pampering to help us feel
—Linus of Peanuts Fame
One of the harshest realities of a life threatening illness
is how drastically the world changes. And it can happen so quickly. One month
you are celebrating the holidays in the Lone Star
State, and the next month
you are sitting in a hospital room wondering what a test will reveal.
For a time while my wife Margaret was sick, she spent time
upstairs in our master bedroom. She had to sleep sitting propped up by a
collection of pillows, but still, our bedroom served her needs and she was
comfortable. But as the pancreatic cancer took hold and her energy waned, it
became clear we would need to move her downstairs into a bedroom off the den.
The walls had paper that Margaret had picked out and hung
herself and direct access to a bathroom and was a few feet removed from the
den. The den in turn had access to the backyard through a sliding glass door.
Outside the doors lay the world Margaret loved so much. A virtual forest of
trees along with rolling hills, deer, a seasonal creek and of course flowers.
At first, the move seemed elementary to me. I figured we
would organize the room, put a few things in boxes and all would be fine,
right? The first change had to be the
bed, as a hospital type of bed made sense. So I took the bed that was in the
room and stood it on its side against the wall, opening up the room for the
bed. But Dona, my step daughter, told me the old bed had to go.
This showed me that some things were not on my radar even
though I thought everything was on my radar. I just wanted to solve the problem
and move on.
But Dona was right. The room needed to be more than
functional; it had to be where her mom would be comfortable. Not only was this
to be a place for Margaret to rest, but to live as well. She thought about how
the room was going to feel to Margaret.
So out went the old bed. Bedside tables were set up in easy
reach of the new one. Paths to the bathroom as well as to the hallway were
cleared out for easier navigation. Walls became places to put up pictures, etc.
that were a part of Margaret’s life as were fresh flowers, often picked from
the garden she loved so much.
While I never admitted this to anyone, don’t even know if I
was aware of it at the time, her move from our room upstairs to the bedroom off
the den was more than a simple move of convenience. When she was still in our
room, life was still filled with many things that were normal. She would spend
time deciding what she was going to wear, etc.
Having her in our room helped keep fear at bay; fear of the unknown,
fear of how bad her sickness might be, fear about how much our life might
There was also hope. We still didn’t know exactly what we
were up against while she was spending time in our master bedroom, which meant
that many things were possible. While we were frustrated because we weren’t
sure what we were facing, we also had the hope that whatever it was, we would
have options and treatments that could work.
Moving her downstairs changed the hope. By then we knew she had pancreatic cancer and
all of the horrors that went with it. Hope took on a different form. We hoped
we could make her comfortable, that some of the little things in life she
enjoyed could work in the new room. We also hoped she had more time and not
less and that we could manage the pain. And if hope changed when she came down
those stairs, so did fear.
There was a fear that her pain might grow too great or that
we couldn’t learn quickly enough how to properly do her IV or the many other
The pace of things changed, too. There was now a
sluggishness that had nothing to do with her, but rather, the pace of
everything else. It almost felt like a shift had taken place and things now
moved in slow motion.
Whether she was upstairs or down, our cats, Max and Amy,
were always around and I think this was one of the consistent things that
helped Margaret to be more comfortable. They always wanted to be close to her,
sitting on the bed with her and keeping tabs on what she was doing. When we
moved her downstairs, they adapted to where she was and she enjoyed their
The basics you never give any thought to day-to-day suddenly
become more important when you are trying to create an environment and space
that will work for somebody facing a serious illness. Is the room too cold or
too warm? How do you keep it clean without making lots of noise? Is the room
close enough to the rest of the house so no one feels isolated?
We also set up a portable intercom system and had a TV in
the room as well as in the den so we could watch movies together. This and all
of the above helped make life seem more normal.
No small feat when you and your loved one are facing terminal illness.
Overall, in the time we had, we were able to create an
environment that was right for Margaret because it was designed for her
likes and needs, not ours. Along the way we made it beautiful because she loved
beauty. And that brought comfort to all of us.
J. Dietrich Stroeh is author of Three Months: A Caregiving Journey from Heartbreak to Healing (2012
FolkHeart Press). For more information, visit www.threemonthsbook.com.
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