Writing is a weird thing. Some times you can sit down at the keyboard and
the words flow on the computer screen as if by magic. Then the next time you
sit down you stare at the screen, your fingers posed and ready for a thought
to form in your brain, travel down your arms and make your fingers fly
across the keys, but it doesnít happen. Your brain is in neutral; your
fingers are just fingers---not mystical extremities that can tell your
moods, your stories and your thoughts better than your tongue could ever do.
I want to write about the little things that the female spouse/caregiver
misses, but I donít want to sound like Iím venting or griping or getting
ready to hop on a sailboat going to Tahiti to live happily after sipping
fizzy navels on the beach. I know these tiny things Iím going to write about
may sound trivial, compared to what the stroke survivors are missing in
their lives, but the caregiver orchestra is playing my theme song and the
lyrics I sing can only be my own.
I write as a person whose spouse is over five years out from his stroke.
This time frame is of utmost importance because this far out we spouses of
survivors have already mourned our losses and said good bye to many things,
BIG things and for some of us spouses this acceptance has not come easy, not
come with a philosophical approach to life that makes it more palatable.
Weíve said good bye to the futures we had planned, to the lives weíve left
behind, and to the feeling that we were invincible. Some of us may have
given up careers weíve loved, houses weíve loved. Friends and family may
have left us behind, and none of us will ever again take security for
granted. Iíve met these caregiver challenges and made my peace; Iíve found
my caregiver compass.
The little caregiver moments Iím trying to write about the ones that bring
flickers of melancholy when we least expect it---times like going to the gas
station and pumping our own gas and recognizing that this is one of the
little male/female niceties that we women who grew up in the Ď50s just never
thought about in the past. It was just assumed that our guys would be the
ones to jump out of the vehicles to pump the gas---at least this was true
for me in our pre-stroke relationship. Now, I pump all the gas and every
once in a while regret seeps in when Iím doing it.
Another one of those male/female niceties that I, for one, took for granted
was my husband, Don, always being the one to get his wallet out to pay the
servers when weíd go out to eat. Itís such a little thing---carrying the
money. It takes very little effort on my part, but in a weird sort way it
sometimes makes me feel like Iíve lost some of my femininity. From a people
watching viewpoint, though, itís interesting seeing how waitresses and
waiters handle bringing a check to a table when an aphasic guy is sitting in
a wheelchair. A few will still put it down on Donís side of the table, but
most will automatically lay it down by me. The smart ones will put the check
half way in between us. The smart ones get better tips.
I miss other small things, too, like calling Don to kill a spider---itís the
other way around now. I miss him taking the car in for servicing, our
full-body hugs, him answering the phone, and most of all, going places on
the spur of the moment. I miss Don lifting heavy things for me or changing
light bulbs in the ceiling fixtures. I miss him fixing the toilet, drilling
holes, and washing the car. These are all tiny niceties or minor shifts in
responsibilities, hardly on the radar screen of lifeÖ.but all the same these
are the melancholy moments that found their way to my keyboard tonight.
Jean is the caregiver for her husband, Don, who had a massive
stroke May 21, 2000 at age 59. A few days later the family was told, "He
will never be anything more than a vegetable." He was paralyzed on the right
side, had no speech and he had swallowing issues and many other
complications. Don spent 101 days in the hospital/nursing home/rehab and had
5 months of intense, out-patient therapies four days a week. Since then to
the present day, Don takes part in speech classes twice a week at a local
college. Now, Don can walk short distances with a cane (although he uses a
wheelchair most of the time). He is out-going and works very hard at
increasing his severely limited vocabulary. His intellect and great sense of
humor are all in tact and he tells anyone who takes the time to figure out
what he is trying to say that he is very lucky to have proven the Ďvegetable
for lifeí prognosis wrong.
Copyright © April
The Stroke Network,
P.O. Box 492
Abingdon, Maryland 21009
All rights reserved.