Melancholy Moments: A Caregiverís Perspective

By Jean Riva


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 2006

The Stroke Network, Inc.

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