It is hard to believe Robert has lived with us full-time for
four years! The first couple of years he lived in our family room and used a
downstairs half-bath – no tub; no shower. Boy was he clean, though! It’s
amazing how clean a person can get just using a shower chair, a bowl, sink and
a thousand towels.
I would never have believed we could do that for two years
but it worked. Robert was happy living with us and Richard and I just had to be
creative and flexible to make it work for us too.
We moved to a one story house almost two years ago which
means Robert has his own room and – bonus! – a bathroom with a shower and tub.
He is ecstatic having his own room and I cannot believe how much I appreciate a
full bath!
I’ve realized how important it was to have the experience of
the first two years, though. It really made Richard and I think about how to
efficiently and safely care for Robert in a less than optimal situation. Having
to give him sink baths every day for two years makes it easy for me to return
to those when he is sick.
Robert’s mobility is one of the first things to go when he
is sick. He can’t stand up straight, can barely move his legs forward and
certainly can’t turn or step backwards (as is necessary to get into the tub
chair). So when Robert is sick, as he has been quite often these past several
months, we go back to the sink, shower chair, bucket and towels routine. Even
if he can’t move well, he still needs to be cleaned up.
When we first moved to our new house, we organized Robert’s
room with his input. Having a television was very important to Robert so
Richard mounted one on the wall so Robert could easily see it when he was
relaxing before he went to sleep at night. It took a while but we finally got
Robert a hospital bed so we could keep his legs up to reduce his edema and keep
his head up a bit to help with his breathing and coughing.
His room was filled with family photos as well as a couple
of collage boards with his get well and birthday cards he has received through
the years.
The oxygen machine was set up so it was easily accessible
and the charts we keep for him were on a dresser holding some of his “back up”
clothes. (The most used clothes hang in his closet.)
After a while, he collected more medical equipment. He
needed a nebulizer so we added that to a corner of the room. He was frequently
sick so we kept the humidifier in his room as well. Add a standing fan during
the summer since his room tends to stay warm as well as a CD player and an
iHome player for the music he likes to listen to when he falls asleep. Half the
time, we keep his transport wheelchair in his bedroom so he can use that when
he is sick (the larger one is too big to easily move from the narrow hallway and
turn into the bathroom).
The room was getting a bit crowded!
Robert had pneumonia this past October and again in January.
Thankfully, his medical team agrees it is best if we can keep him out of the
hospital when he is this sick. There is such a decline after a hospital stay
and if we can administer antibiotics and keep track of his vitals regularly at
home (need to keen an eye out for Sepsis), then there is no reason to send him
to the hospital.
Keeping him home when he is running a fever, coughing and
barely mobile is a challenge but his doctors trust us enough to know we will
send him to the hospital if he takes a terrible turn for the worse. (It helps
to have the most caring Nurse Practitioner on the planet in daily contact – she
even gave me her cell number in case I can’t reach her in the office.)
When Robert was sick in January I realized his room had to
be reorganized. I was squeezing between his bed and the window in order to take
his vitals and the oxygen machine tubing was unorganized and a mess. I was
stressed out enough worried about Robert and being hyper-vigilant with his
vitals and needed to make things a little easier on myself.
Once Robert recovered and was spending more time in other
parts of the house instead of most of the time in his room, I went to work. I
put the medical gloves on, grabbed the cleaning supplies and turned on some
music.
I meant business.
I cleared out the unnecessary crap in his room. If he didn’t
need it, it was gone. Does he need a CD tower with a hundred CDs? Nope. He
listens to one or two. Does he need this extra table in the room? Nope. Gone.
He does need better lighting so a standing lamp from my office was relocated to
Robert’s room.
I reorganized the supplies in his closet, on his dressers
and moved the oxygen machine. I hung hooks so I could organize and loop the
pesky tubing on the wall to keep it off the floor. I moved the nebulizer, humidifier
and blood pressure machine so they were easier for me to access when needed.
I made sure his personal touches were still visible
(calendar, bible, photos and collages). We even went shopping when he was
better and found a 49er blanket on sale!
Things were looking good.
When he got sick again in March, the room was put to the
test! Thankfully, everything was in easy reach and I wasn’t doing gymnastics in
order to use the nebulizer or refill the humidifier.
The room fulfilled two purposes: it was personalized to make
Robert happy and it was organized to make things a little easier on me.
I’m sure there will be more changes to come depending on
Robert’s health and the addition of even more equipment but I know Richard and
I can make do with whatever is thrown at us and am confident we can make a few
changes when needed to make all of us happy.
It’s important to me that Robert is comfortable and happy
but equally important that things are set up in a way that Richard and I, the
caregivers, are happy and comfortable too.
Everyone wins. Nothing wrong with that!
