Sad Saturaday

Here it is four o’clock in the afternoon and I’ve worked myself up into a major depressed state of numbness. I should be cleaning house for our company coming on Monday. But I can’t seem to move. Don’s favorite brother and sister-in-law are coming over to show us pictures from their camera safari trip to Africa. Also coming is our niece and her mother, another sister-in-law who is ten older than me. Our sister-in-law is also a caregiver to our niece who has MS. It shouldn’t be that way, should it, an elderly mother having to care for a daughter who was once independent, married and full of life.

Don starts speech class in a few weeks and as I usually do I decided to keep track of all the speech he is able to get out without prompting in a day's time. Doing this today wiped out my previously good mood. Here it is late afternoon and I’ve counted only sixteen words! In the pre-stroke era Don would have said that many and more words in a quarter of a minute.While I was helping Don finish up his shower this morning I did notice a sign of progress (if you want to call it that and I do). He was doing things that he usually counts out---putting on deodorant and baby powder with a puff---and instead of counting to ten he was only counting to five. It’s such a small thing to the outside world, but not really in the brain healing business. So I grabbed on to that straw and I hold it near because the small things are all we’ve got.

When Don is in the shower one of the words that always come up is “handicapped.” I think he says it then because the shower ritual is where he needs the most help during the day. Today I said to him, “You could try to be politically correct and call yourself ‘disabled.’” That suggestion was meant with an emphatic “NO!” Don thinks of himself as handicapped and there won’t be any cleaned-up version in HIS life. Message received loud and clear.After shower time we loaded the dog in the Blazer and took him to the pet store where dogs are welcome to do their own shopping. We can only do that when the budget can afford to blow an extra twenty bucks. They put all the good smelling treats, flavored rawhides and expensive toys down low where the dogs can grab them. Cooper knows the drill. He shops the pet store like he’s in a contest to see who can get the most merchandize in a basket before the buzzer goes off. It’s like he’s got a calculator in his head or he can read the bills in my wallet. When he hits twenty bucks, he has this satisfied look on his face that says, “Man that was fun. Let’s go home now.”

After the pet store, we picked up a few groceries and some take-out food---we had lots of opportunities for Don to get out spontaneous speech. And yet it was only sixteen lousy words. One word was “sh#t” said when a teenager walked by the car. I still don’t know what sin she was guilty of. Maybe just being young, cocky and oblivious to looking in the direction of senior citizens was as enough to get the ‘sh#t’ score out of Don. After playing twenty-one questions I gave up trying to figure it out. This is my life. It’s gone from stimulating conversations to figuring out which of fifty different meanings Don’s aphasic brain hangs on a single word said in different tones, with different inflections.

Some of the other words Don spoke today were: “Pee” for the obvious reasons. “Yes/no” sung over and over again like a song. “Cooper,” “doggie,” “hey!” and as stated up above, the numbers one through five. It’s all so sad! How many hours have we spent doing speech homework over the past five and a half years? Hundreds? More like thousands. Why couldn’t Don’s aphasia have fallen in the category of transient aphasia? The Aphasia Association says that fifty percent of all people with aphasia do have transient (aka temporary) aphasia that will disappear quite quickly after a head injury. There is nothing transient about Don’s aphasia. My head has accepted that Don will never hold meaningful conversations again but my heart still mourns that loss from time to time. My heart still wants to get out of the mommy mobile once in a while and just be me again with a friend by my side instead of a responsibility. I just want to be Don and Jean again and not speech student and queue master.

We get the occasional signs that it could happen, that speech could come back, but every growth spurt is followed by a quiet time when words are as shy as made-up fairies playing on the dewy forest floors of Ireland. The words come. The words go, and after awhile you don’t know what is real and what is just your vivid imagination wanting to believe in a fairy tale where only good things happen.

Jean Riva ©

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 ©

Jaded Jean

I think I’m getting by jaded by mentoring and hanging around the stroke community. I ran into someone today whose husband had a stroke a few months ago but he was not affected physically at all. He did, however, have some “mental and personality problems that keeps him from working,” she said. Then she adds, “It’s much easier for you because you can see what’s wrong with your husband.”

Excuse me! Just because Don has physical disabilities that can be cataloged with the eye doesn’t mean he didn’t also have to go through a grieving process over losing the life style he’d had before! It doesn’t mean he didn’t have to overcome some major impulse control, anger and cognitive issues! I said this to the woman, using my best oh-so-sweet, motherly voice. Maybe it was a little too sweet because that started a pissing contest. HER husband was WORSE to deal with and the bottom line was---after the contest ended---that she was filing for divorce.

The term ‘bitch slap’ came to my mind but you know me, I could do that if I was sitting behind a computer keyboard using the printed word as a riding crop, but in person I’m Miss. Manners. So, I gently tried to point out that her husband’s stroke was very recent and things could change a lot in the coming months.

“Not likely!” she replied. “He doesn’t try at all. He won’t do anything his shrink suggests.”

At that point I’m thinking to myself: Why am I letting the woman get under my skin? Am I having a feel-sorry-for-Jean-day and I didn’t like having someone telling me how “easy” I have it? Am I just being defensive because this woman could be metaphorically married to any number of survivors who I’ve come to know and like? Probably it was a combination of the two.

I finally decided that this woman was looking for validation that it was okay to divorce her husband. I didn’t give it to her. Screw her! Yes, I’m jaded. I’m tired to the bone from sleeping less than five hour a night most nights---it’s been a hard caregiver month. My ears hurt from listening to the long, loud no-word operas that Don’s been singing lately and everyone in the house, including the dog, is on a different medication schedule. My Nurse Nancy uniform is too tight and I haven’t had a strawberry truffle in the house in months. Woo is me. Woo is you. But the future Ms. Divorcee can find another hen house to lay her eggs.

Jean Riva ©