Catching the Caregiver Back Pain Train

I'm just returning from a two week pity party. You know the kind where you don't think you can handle one more metaphorical---or real, for that matter---hangnail. Giving myself a sharp "get over yourself, everyone has problems" usually keeps pity parties off my property---I'm generally an upbeat kind of person---but not this time. This time, four out-of-place vertebrae were playing sadistic games with the nerves running down my leg and they threw open the front door inviting the pity party pack to camp out in the living room. Woo is me! The cry fest started and the tears were only interrupted with occasional outbursts of succulent statements like: "I can't take care of us like this," "Oh, crap!" and "where is a nursing home when you need one?" I even cursed Don and myself for not having the foresight to have a few kids that we could guilt trip into coming over to help their old folks out in our time of need.

The only thing I was able to accomplish these past two weeks is to drive myself five times to the nearest chiropractor, shove simple foods like cereal and TV dinners towards Don, and let the dog outside almost as often as he needed to go. (And wouldn't you know it, my back problem started the day after we had the carpets professionally cleaned.) Heck, I was in such bad shape that I couldn't even kill an ant that was scouting his way across the bedroom in search of a cozy little place to relocate his colony. All I could do is hope he'd scouted his way half way up a wall where I could assassinate him without bending over. He was a smart little bugger. He never did get within my kill zone, but the gods of small favors did send Levi, our curious wonder puppy, to play the poor ant to death.

Thankfully, the pain is less frequent now and not as intense and instead of longing for that nursing home where all our needs could be met I dream of assisted living where someone comes in do the laundry, see that we eat and are not lying in bed bemoaning the fact that the bathroom is twelve HUGE steps away. I'm making progress. Next week I hope to be confident, again, that I can manage our lives with the decorum of a happy, in-charge woman who is not ready to throw in the proverbial towel.

Caregivers and back pain go together like peanut butter and jelly. Or so I've been told. I don't know why it took me so long to admit that pushing nearly 300 pounds of man and metal chair around has taken its toll on my already aging and not so beautiful body. So next week in addition to playing catch-up for the time lost to the pity party and pain I start physical therapy to learn how to minimize lower back strain. In the meantime I'm armed with my new best friends---the 48 inch body pillow and the handy-Danny PosturePro lumbar support. The first time I climbed on that pillow, face down with all four limbs hanging off, I audibly sighed and thought there really is a light at the end of my caregiver, woe-is-me tunnel and its not a train coming full speed ahead. ©

I'm Back!

Update: I haven't croaked and neither has Don. We haven't so much as had a cold to use as an excuse for not updating my blog. But since the last time I wrote an entry I have started holding auctions on e-Bay---ten a week---which has totally messed up our house. We've got the 'photo booth' area, the 'packing area' and of course the what-the-hell-did-we-buy-that-for?' area. Our 'Salvation Army' area is growing. Ever so slowly. Okay, I confess it's hard for me to give things away.

Before Don's stroke we had just nicely gotten started selling stuff on e-Bay. We had booths in several antique malls and we were vendors a 3-4 summer swap meets each summer. E-Bay was supposed to be part of the retirement plan, along with the booths and vending. When we downsized after the stroke, I kept all the small, "mailable" stuff but the stroke and all that involves got in the way of the fulfilling Plan B. So here we are almost nine years later and the reality set it i.e. I have to get rid of this stuff!

Life does go and we do have something else new in our lives. We had a little patio built at the front of our house. It will be great for Don to have a place sit and watch the neighborhood come alive on those hot summer nights when everyone is out walking, jogging and dog walking. It's small but the impact on Don's life will be big.

Sorry I worried a few of my readers with my absence on the web. I'll try not to let so much time go between updates.

Are You Reliant?

If you want to feel old really fast get a new digital camera. At least the one I just got is making me feel that way. It came with not one but TWO user guides and some of the pages have such small print that I have to use a magnifying glass just to read them. Worse than that, the camera has a mode dial with tiny icons on it and without my handy-dandy magnifying glass I'd never know those little suckers are suppose to represent things like: portraits, night shots, indoors, landscapes, movies and a bunch of letters I've yet to decipher. It even has an icon for aquariums. Aquariums! Who needs that? What I want to see is an icon for starting my coffeemaker in the mornings.

My very first camera was a Kodak Brownie box camera that I got for Christmas when I was a kid. Brownies have very few moving parts---a shutter, a button and a spool to thread a roll of black and white film inside the glorified cardboard box. I still have that camera. And believe it or not, I've only had two other cameras in between that Brownie and my new Canon. One of those cameras was sold off last summer on eBay as an antique. That sale alone established me as having entered the realm of old-dom, but I already had my suspicions. Being old is like living in a parallel universe. You can function normally in the world but in the back of your mind you know that unlike most of the other humans moving about, you have no future. You only have today unless, of course, you like dwelling in the past.

Having just bought a camera that should come with a master's degree if you learn how to use all its functions, does it sound like I dwell in the past? No, but I'm not so sure Don, my husband, doesn't live back there. The other day we had one of those infamous 'conversations' that all spouses of aphasia and apraxia patients would label as what-the-hell-difference-does-it-make? He managed to get out the words 'employment,' 'Mrs.,' and 'house' plus the phrase 'long-long ago.' Two hours later of off and on again games of Twenty-One Questions I finally figured out Don was trying to say that a guy he had worked with and his wife came over to visit him fifteen years ago. He, of course, was thrilled that I cracked his coded speech but I was working hard to keep my weary brain together long enough not to blurt out, "What the hell difference does it make that you had company fifteen years ago?"

Indeed, what the hell difference DOES it matter what happened in the past? We can't go back there. Or can we? We can still day-dream about what was once upon a time and is no more. We can still buy 120 film to re-spool in Brownie box cameras. We can still capture life in black and white, but what fun would that be while everyone else is sending vivid color photographs around the world as fast as a mouse click? Dwelling on the past doesn't make us young again. It just makes us irrelevant.

I have a theory about what is missing the most in the lives of old people---goals. So I'm vowing to live long enough to learn all the functions on that new camera and Don has agreed to live long enough to fill all the slots in his new penny collectors album that goes up to the year 2020. Setting goals is a good thing. They make you do off the wall stuff like buy aquariums just so you can learn to take pictures of fish and to get pennies back in change to check.

Jean Riva 2009 ©

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Hear Me Roar!

NOTE to long time readers: Entries between December 22nd down to January 11th were moved here from an old blog I wanted to close. If something seems familiar, that's why.




I went swimming at the YMCA this morning. Jeez, I hope no one calls Social Services and the SPCA. I left Don and the dog alone in the house for an hour and a half while I did deep water aerobics. They were sleeping when I left and a delicious bowl of Kellogg’s was waiting on the kitchen counter for which ever one of them got to it first. This little wifey-poo is through mollycoddling the men in her life. Freedom is sweet.

I swam around with all the other senior citizens and only felt one tiny twinge of guilt over poor, dear Don asleep in his bed. It happened when I saw the lift the Y uses to get people who can’t walk down into the pool. But then I remembered that this was ‘Jean's Time' and guilt has no place taking up space in my head. I am woman. I need to roar! I also need to purr even if I have to scratch my own stomach to feel satisfied enough with life to find something to purr about. Yup, I’ve paid my caregiver dues. Years of putting Don’s stroke related needs first has earned me two sessions a week in the pool where I don’t have think and do “stroke” 24/7. Life is good.

When I got home from the Y, someone had eaten the cereal but neither one of my guys was awake to fessing up to who did it. Nap time together in the Lazy Boy aways comes after breakfast. It doesn’t really matter. I already know that one of them started out with the bowl and the other one ended up with it on the floor. Don’t tell Miss. Manners! I doubt she’d approve of dogs who try to lick the patterns off the china. She’s probably from the school of dogs-are-just-dogs. But the earth doesn’t belong to man alone. We share it with a diversity of God-created creatures. That’s my story and I’m sticking to it. Besides, we have a good dishwasher with a high-heat cycle.

Tonight we’re going to the old people’s club for grill night. Don will be trolling for friends while I stand at attention ready to slap him down if he starts yodeling his favorite one word song. Thankfully, most people at the club are hard of hearing and won’t know if he’s belting out the opening stanza of the ‘Operetta of the F-word in C Minor’ or if he’s making a statement about someone who is smoking at the next table. Yup, it’s still his favorite operetta to perform at the top of his lungs.

After we leave the club we’ll stop at the pet store to pick up some Mother Hubbard treats. Don’t tell Cooper. He’ll be mad enough that we didn’t take him to grill night and shopping at the pet center. Picking out his own merchandise is one of his favorite things to do. Lord, will I ever get the guilt bug-a-boo out of my head? It came with the packet they hand new caregivers when their spouses are about to leave rehab.

Also in the packet I received were several pamphlets from the American Stroke Association. The one on aphasia says: “Unfortunately, there is no general rule about how much improvement to expect. Some stroke survivors who are very disabled in the first few days make a full (or almost full) recovery in a few months. Others are left with serious and permanent language problems. Caring for a person with aphasia can be especially challenging.” No dog do-do, LeRoy! Another pamphlet says: “Being a primary caregiver may change your role in your family. How others in the family see you, what they expect from you, and your responsibilities and freedoms all may change.” Thank goodness, someone had the forethought to point out the obvious.

Okay, I’m through roaring. I’m through pandering for tea and sympathy from my internet friends. I’m through wondering why Don and the dog are in the living room sharing a bowl of Pup Corn---yes, PUP not pop corn. I pitched a fit. I really did, but they both like those little cheese-flavored puppies.

Jean Riva ©

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Friendships

My dad had a lot of little sayings. One of them was this: "With true friends, you can lay your billfold and your wife down side by side and a good friend won’t touch either one of them." It always got a big laugh when he said it, but he was also dead serious.

My dad had the same best friend for over seventy years. Growing up, our families spent a lot of time together, and in their retirement years Dad and Harold went out for breakfast together almost every day. In terms of their characters, their temperaments and values, they were as different as day and night. Harold was lazy, his house was falling apart around him, and his favorite actives all involved having a beer in his hand. My dad didn’t drink often and there wasn’t anything he couldn’t build or fix. Dad was always busy and often he had a gaggle of little kids following him around. Harold treated his wife like a slave and wasn’t much of a father. My dad was a warm and affectionate father and husband who was always my best cheerleader. Harold was not the kind of person I would have wanted for a father or husband, but he sure did add a lot of laughter in our lives. He was a colorful character, unique in every way…and my dad loved that guy through out most of his life.

One time I interviewed my dad for a family history book I was writing and I asked him how he was able to maintain so many warm friendships for so many years. His answer went something like this: “If you want perfect friends, you’re never going to have any friends. If you are always trying to change your friend’s way of thinking or acting, you aren’t going to have any friends. If you want your friends to all be just like you, you aren’t going to have any friends. Friendships are about respect for each other’s uniqueness. Friendships are about sharing good times.”

My best friend from kindergarten thought my second year of college is still in my life. We live far apart now so we only get to see each other often. We were like two peas in a pod for seventeen years, and then our lives took different directions. She’s a typical Washington D.C. wife; if you’ve ever seen the movie Birdcage, my girlfriend has a lot in common with the senator’s wife. Me? Let’s just say that ‘prime and proper’ and throwing lots of dinner parties is not my style. She’s got five complete sets of good china. I’m using 1930s Buffalo diner ware that I picked up one piece at a time at flea markets. But we still maintain our friendship because we do respect each other’s path to happiness and we can still make each laugh after all these years.

Tonight we went out for dinner with four friends who’ve been in Don’s life since their teenage years and in mine for the past 35 years. One couple lives out of state now, but whenever we’re able to get together, we can all pick up right where we left off. Tonight was one of those rare times filled with warmth and laughter. The kind of night you wish didn’t have to come to an end. None of us are alike in personalities. Our politics and life styles are all different, but as I sat there I realized that one of the reasons why we all get along so well is because we all have respect for each other’s uniqueness. And as far as billfolds and mates go, any one of us could lay ours down on a bed and the others wouldn’t touch them.


Dad, wherever you are...you can still make me smile.

Jean Riva©

painting by Adriaen Brouwer

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Tale of Two Bad Boys and a Song

I call her lollypop, lollypop, lollypop, oh lolly-lolly-lolly
Lollypop, lollypop, oh lolly-lolly-lolly
Lollypop, lollypop, oh, lolly-lolly-lolly
Lollypop

Handicapped, handicapped, oh handi-handi-handi
Handicapped, handicapped, oh handi-handi-handi
Handicapped, handicapped, oh handi-handi-handi
Handicapped

Same tune, different lyrics. Guess which set of lyrics belongs to Don and which set belongs to Daddy Cool---at least I think it was Daddy Cool, I could be wrong.

It’s not one of Don’s favorite or most frequent one-word aphasia songs but I hear it often enough to recognize that singing it is my husband’s way of dealing with stroke-related frustration. Last night The Handicapped Ditty was the last thing I heard before drifting off to sleep---the second time. I had gone to bed several hours before Don and when he came to the bedroom I woke up with the snapping sound of his hearing aid box closing.

“Did you remember to let the dog out?” I muttered, half asleep.

“Oh,” he replied as he backed out of the bedroom in his wheelchair.

Some where in between the bedroom and the outside door something happened with the dog that had Don singing his version of Daddy Cool’s song. “Handicapped, handicapped,” Don vocalized all the way back to the bedroom. It was like a lullaby that wooed me back to sleep.

When I'm a wake and listening to his song I'm often struck by the surreal-ness of hearing such a happy little tune sang with such a sad word repeated over and over again for the lyrics. It's inventive of Don's aphasic mind to be able to put the two together and have a tirade of sorts. But last night I was too sleepy to think these thoughts or to play twenty-one questions to find out what brought it on.

It wasn’t until this morning that I figured out why Don was singing The Handicapped Ditty. The dog either put up a fuss and wouldn’t go outside for him or he was a no-show because the half deaf mutt couldn’t hear Don calling at the door. Or Don could have been calling out "Jean" instead of "Cooper" as he often does and the dog took him at his word. Whatever happened, the evidence was clear that he couldn't get the dog to go out i.e. the darling dog had left his calling card on the carpet, in a nice little pile for the entire world to see or me to step in in the wee hours of the morning. Darn! What do you do at the exact moment of discovery? I couldn’t bawl the dog out. He was still asleep. I couldn’t bawl my husband out. He, too, was still asleep. So, I hopped into the bathroom to give my foot a shower as I contemplated whether to cut the two guys in my life a break or wake them both up with a rousing rendition of my own frustration song:

Shrew-Lady is raising cane in the place
Says you’re both in the dog house again
So wipe those smiles off your guilty faces
And listen to the words of her crazy song.

Jean Riva ©

Painting by Edwin Landsee, 1840, Trial by Jury

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Water for Elephants

It's hard to remember a time in my life when I've felt more disheartened than I do right now. I've always been a glass-is-half-full kind of a person, a take charge of my emotions kind of gal who was never down or depressed for very long. Part of it---it not all of it--- is probably the by-product of having a total knee replacement July 23^rd. Spending a couple of weeks depending on someone else was like seeing a preview of my life 10-15 years down the road when it's entirely possible I'll get shipped off to a nursing home with smelly residences, sticky floors, and where Jell-O is considered a major food group.

While I was immobile after the surgery I made the mistake of reading a bestseller titled "Water for Elephants" by Sara Gruen. It's a gritty, well-written novel about an old man in his early 90s living in a nursing home---physically at least---but mentally drifting in and out of memories of the days when he was young, naive and working for a circus that traveled from town to town by train. The descriptions of the condescending way some the staff at the nursing home treated him really hit home. How sad it is that someone can live a life as interesting as this old man's and yet be treated as if his simple desire to sit at a different dinner table from the one assigned him was too much to ask. To have your free will taken away in such little ways has got to break your spirit. At one point he spent a long time trying to get his wheelchair close to a window only to have a staff member come along and wheel him back to sit in front of the door to his room. I've never understood why nursing homes do that, line people up and down the hallways as if drooling down your chin as strangers walk by is some sort of treat.

It's been warm here in Michigan but I've been so cold that I'm wearing sweats all the time. Now if that doesn't make you look and feel old I don't know what does. I'm probably cool from the blood thinners I was on and the loss of blood. And this, too, shall pass. They tell me the extreme fatigue I feel will pass, too, but I wish I could curl up into a ball, sleep until 2008.

Physically, my knee is doing fantastic. I'm off the pain medications and driving again, still going to therapy and making good progress. But in the past few days I've developed hip pain. It's been a chronic problem off and on since my snow plowing days and has put me in the ER several times including once late last year. I don't need that again so I'll start the muscle relaxers again when I can get a refill tomorrow and hope to nip the hip pain the bud. I don't need to feel guilty over snapping at my husband, but I do. I hate telling him we can't go here or there because dealing with his wheelchair makes the pain worse. I don't need to feel this old! Someone, come hold my hand and tell me that I'll pull out of the funk I'm in.

The old man at the nursing home had a great ending. He escaped the nursing home to run away to a circus parked across the street. There he found an owner who loved his stories of the old days and who harbored him from the police when they came looking for the elderly run-way. So if you see an old man selling tickets at a circle, say "hi" to Jacob. At least in fiction the life can end as it should.

Jean Riva ©

P.S. I really did like this book. Its circus history was well researched and kept me turning the pages. I read it in three days. It did feel good to be reading again, even though it did make me sad in places due to my own health issues. At one time in my history I read 3-4 books a week as part of a review job I had at the time, but since my husband's stroke seven years ago I've read very little fiction.

painted by Adolph von Menzol

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