Goals and Ghoulish Things

There’s a kind of restlessness that goes with caregiving. Or maybe it’s not the caregiver life as much as the so-called retirement life that is so hard for me to get used to. We go along with no goals, no deadlines and a structure that revolves around the unseen forces of the mighty medical community’s appointment schedulers. We go weeks without anything on the books then our lives change and it’s like a pack of wolves is chasing us from one office to another to feed the blood labs, speech clinics and doctors with their quarterly follow ups. No matter how hard we try to spread them out, one or the other office is always canceling or moving us around on the schedule because---hey---“You’re the retired ones with nothing to do except get up each morning and check to see if your breathe still forms a film on the bathroom mirror.”

I miss the days when I had a reason to bounce out of bed. Hell, I miss the days when I COULD bounce out of bed. Now, I have to sit up on the edge of the bed, let the vertigo pass and hope it does before I pee my pants. Then I test my knees while leaning on the near by bookcase before I hobble ape-like with my knuckles creeping their way along the bed for balance until I get to the end where I grab a four-legged cane. I can’t stand up straight or walk without it in the mornings until my knees find their grooves and lock in for the day. When I’m in my Frankenstein gate, I toss the cane and I’m good to go.

I don’t know how much longer I can put off getting those joints replaced. But I have such a fear of that surgery! It’s so unnatural to think about having someone taking a power tool to your legs, cutting sections out and gluing moveable parts in their place that are only suppose to last 10-12 years---parts that have had at least 23,000 of them recalled. And I just know I’ll be one of those statistics they quote on people who have strokes during the surgery. It’s the medical disclaimer that says, “Now don’t worry if you stroke, its okay. My malpractice insurance won’t go up because I’m giving you this little disclaimer speech.” I also worry that I’ll be one of the people to get a couple of those recalled knee joints that were supposedly cleaned up and sent back out to use in other patients. Yes, they took them out of one set of unlucky dudes and gave them to another set of people, hoping they got the industrial oil slick off from the artificial joints this time. I won't even mention body fluids from who know where. Yuck! Never research medical recalls unless you want to scare yourself to death.

I swear I’m not turning into one of those old ladies who worry about everything from knee surgery to fly specks on the wall. Maybe if I got new glasses I’d find a few fly turds to get excited about, but I’m cool about the topic for now. I don’t worry just for the hell of it. I don’t worry, for example, that the refrigerator light isn’t going off when the door is shut the way it was designed to do. I don’t worry about dog kisses or germs in the sink that are big enough to have their own zip code. I am a worry-wart by nature---it was called being a trouble shooter in my pre-retirement/pre-caregiver days---but I’m still grounded a few points above the paranoid and pathetic. Thank you very much.

I guess it’s really true though. I DO need a hobby. This little woman needs to quit wandering through the house with a woo-is-me frown on my face because winter, my bad knees and my husband’s stroke are holding me prisoner. I need a hobby I can do in my gilded cage, I say with a sinister grin only women's libbers will understand. I’d take up the joy of cooking but that idea sucks like a two-head calf on an eight-tit udder. I could finish that quilt I started two years ago, but then I’d just have to start another. How many F-ing Jean creations does the world really need? I wish I knew what would make me happy besides raspberry truffles and a cleaning service! This is the only era of my life where I can remember being bored enough to contemplate stuffing marshmallows in between my toes just so I can get the dog to follow me around for a few hours.

Oh, boy, I just looked at the calendar. Don has a foot doctor appointment of Friday and we’re expecting a snow storm. The doctor’s office building has only one handicapped parking space and a lousy plow service so in the winter months I usually have to shovel Don’s wheelchair into the place. But that’s okay; he’s also located across the street from the candy shop that sells truffles and dark chocolate covered orange rinds. My life just took on new meaning; a have goal…I’ll live until Friday.

Jean Riva ©

Crazy Glue on my Shoes

Some times I hate listening to music. It makes me cry too often. I mean, who wouldn’t cry over lines like: “I can only give you love that lasts forever…” when your guy is sleeping in the other room and you’ve just finished watching The Way We Were?

I loved that movie when it first came out back in the early ‘70s. Plot: a Jewish left-wing intensely political woman falls in love with a white, Anglo-Saxon Protestant who, by his own admission, had everything in life come too easy for him. I do believe it was that movie that made me fall in love with Robert Redford. (Insert a big sigh here.) Barbara Streisand as a movie star I can take or leave but the way she sang the theme song of that film still gets to me.

“…Memories may be beautiful and yet what’s too painful to remember we simply choose to forget…”

We see bits of ourselves in most books or movies. After all, life-experiences are for the most part, timeless and universal. I was never as political as Barbara’s character, Katie, but I was certainly more political than the guys I dated back before I met Don. I was more into sociology and philosophy, too. I’m eternally grateful that none of those relationships ever worked out but, of course, being in my twenties I didn’t see it that way at the time. I would never have been happy serving beer and snacks to the boys in the living room every Sunday afternoon as they rallied their favor sports teams towards the play-offs. "Me man. You woman." I love that fact that with Don I was able to grow in a direction of my choosing.

“…So it's the laughter we will remember whenever we remember the way we were….”

I suppose some people will take offense at a caregiver who spends a lonely evening looking back over her life and wondering if she’d taken door number one or two instead of door number three would she be any more or less happy with the present day. But I don’t view reminiscing in a negative way. Maybe that’s a place we get to as we grow older. Maybe that’s a place we get to when we realize we didn’t turn out all that bad and we want to mark the trail for others to follow.

I look back at all the memories that Don and I made together over the years and I know why I view these caregiver/survivor years as just another chapter in a long book of chapters. We’ve done a lot of living and growing up together. Thumbing through our book of chapters is not about wishing for the past. It’s about loneliness that is often hard to bear. It’s about being two peas in a pod, half of a whole. Reminiscing is a reminder of why we caregivers choose to stay when others might run.

It bothers me when survivors misread the wistfulness that caregivers occasionally express about returning to pre-stroke days---when the survivor internalizes that wistfulness to be a condemnation of their post-stroke self. It’s not about measuring the past against the present for me. It’s about going back to the past to gather strength to go on in the future.

“…Memories light the corners of my mind. Misty water colored memories of the way we were...”

Memories are the commonalities that bind Don and me together, they make our commitment to one another stick like Crazy Glue on our shoes. This is my truth. I’m so sorry if instead of glue on your euphemistic shoe, you stepped in a big wade of snot.

Jean Riva ©