When the World Shrinks to Just One Room

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Added: Tue. Jan 15, 2013 8:20pm
Posted in: Caregivers

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“Sometimes all we need is a little pampering to help us feel better.”

—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 change.

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 new tasks.

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 company.

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.