Thursday's Tumbles and Stumbles ~Stop Helping Me!

The stumble of the week is being a caregiver to a man with a caregiver/helping spirit. This has actually been going on for over a year now, but it almost made me loose my cool this week.

Credit

As my husband becomes more debilitated and helpless, he continues in wanting to assist me and the hospice aides in his care. He'll struggle to change positions in the bed for better access for us while we are attending to him. This increases his pain levels and leaves him gasping for breath. Reminding me of a fish out of water. It would be funny if it wasn't so serious.

No, I don't want to disable him or hurt his ego, but things would go along so much smoother if he'd stop helping me or us.

He had an accident over Thanksgiving weekend not the spilling something or falling kind, but a bowel issue, of the runny kind. Now mind you, I only have one working hand, but I'm changing pull-ups on a 60+ year old man. He raises his bottom for me to slide a disposable pad underneath him. I was thankful for this even though I could have slid it under him without his help. I grab the wipes, scissors, and a clean pull-up from their bags and I'm ready for action.
Hubby:"What do you want me to do?"
Me: "Nothing. Just be still. I got this."
He grabs the bed rail and rolls. "Well, I could roll on by side."
Me: "No, roll back the way you were and stop trying to help me."
He lets go of the bed rail and flops on his back again. A brown stain appears underneath him.
I grab the scissors preparing to cut the sides of his pull-ups. "Don't move."
Hubby turns towards me, "Huh?"
I just manage to pull the scissor tips away from his belly as he turned. "Don't move!" and I show him the scissors. He nods and turns back onto back. The brown stain is now larger underneath him. I'm beginning to wonder if he really was easier to change a diaper on than my two-year old grandson. If this continued, I'd have to change his sheets too.

I cut the sides of the pull-ups and lower the front half.
He lifts his rear end up before I'm ready. The back portion of the pull-up clings to his buttocks for a moment and then flips mess side down onto the bed.  It was then I noticed it was only half on the pad. The other half landed on his sheets. Just as I had suspected each time he had raised and lowered his rear end, the waste was creeping up over the waist line of his pull-up. Now, both sides had mess on it. I'll have to bathe him to get it all off of him.

I let out an aggravated groan. Now I'd have to change his sheets too. I threw a blanket at him to cover up. "This mess will take a bath to clean up."
Hubby: "Okay."
I returned with a basin of warm water and soap. He had pulled his bedside table next to the bed to make it easier on me."It's warm so it shouldn't be so bad."
I pulled on the bedside table so there would be enough room for me to get close to him for the washing part. It resisted. I pulled harder. The table tilted and the bath water slid off the table. When it hit the floor, the splash upwards soaked my jeans and my shirt. Now I'm cursing under my breath as I pick up the empty basin. "Don't touch the table again."

I cleared it from the bed power cord and positioned it where I needed it. Now not only did I have to clean him up, change his sheets, but I had to change clothes too.
Once I returned with more warm soapy water, I bathed him clean. This time he didn't move unless I asked him to. I pulled the soiled pad out to cover the messy pull-up and put clean pull-ups on him. Changed the sheets before he even realized it.
Hubby: "Do you want to help me into a chair while you change the bed?"
Me: "It's done."
I picked up the soiled bedding and put them into the hamper, changed my clothes, and plopped into the chair by his bed exhausted.
Hubby: "I'm sorry, honey. I was just trying to help."
Me: "Babe, I love you, but please stop helping me!"

Thursday's Tumbles and Stumbles

I'm trying something new here with the Thursday's blog or maybe just for today? Who knows. Just to show y'all I'm only human and not to be someone put on a pedestal, like some of you have. I have my fair share of melt downs, trips, stumbles, falls, and down right crazy stuff go on almost every week.

This past weekend was horrible! Friday I saw my therapist for the last time until after my next scheduled Botox series. It was pitiful session. For almost a month now the Botox was wearing out. I had canceled six therapy sessions before Friday's session because of it. I had 15 degrees of movement in my arm, elbow, and wrist. That's not 15 degrees less motion but only 15 degrees of extension total. Still, that's an improvement. But my fingers surprisingly enough, will still extend. That is a definite improvement over the fingernails cutting into my palm, tight fisted I was having.

Saturday, I felt like warmed over leftovers. Not the good kind like soup or spaghetti sauce, but the kind that makes you want to gag just looking at it. But there were things that had to be done and I'm the only one that can do it. Being in constant pain with the spasticity, waking every two to four hours to give my dear hubby morphine, and poor sleep in between, I awoke not in the greatest of condition or mood.

I peed myself getting up to go to the bathroom. Even my pad couldn't hold it and it was running down my legs and into my AFO. Another mess to clean up. *sigh* I pulled my granny, flannel nightgown off. Have you ever had a broken elbow and shoulder casted? Then you know the contortions I went through just getting that night gown off. I wobbled onto my shower chair, preparing to shower when I hear, "Honey, are you awake?"

I put my AFO and soaked tennis shoes on and walk naked into the living room where my hubby is. One major advantage to being an empty nester. He had spilled his Coke Zero. The blanket, sheets and him were soaked through. I pulled out a clean set and changed his bed. Then I got him a clean flannel shirt on and briefs after I bathed the sweet stuff off of him. Mind you I'm still naked except for my tennis shoes and my AFO, and the house is a chilly 65 degree because of the arctic blast. Between his heater and the oxygen condenser the temp around his bed was 75 degrees, but on naked flesh it was chilly work. I got him another Coke and headed for my shower asking him, "Please don't spill this one until I'm done."

I take my shower. The hot water was heavenly. It also loosened up some tight muscles that were cramping. I was feeling sheepish for chastising him for spilling his drink. It's not like he did it on purpose. But as a semi paraplegic caregiver, sometimes your feelings of being overwhelms you. I donned my clean granny underwear with a fresh pad and hobble into the bedroom. It's just easier getting dressed in bed.

Gratuitous boob shot <lol>

My sports bra and sweater decided to get in a wad just past my shoulder blade. I'm twisting around on the bed trying to get it loose. Picture-hot, young, sexual escapades- and you come close to the movements I was doing to get them unstuck. Not bad for an old broad. Finally I get it right. Then came the compression hose, my AFO, my pants, and tennis shoes. After thirty minutes, I was dressed and exhausted. I was thinking about a nap, but my honey-do list awaited.

I went out to get the mail. There it was, my response from my SSI application. DENIED! My hubby's retirement put us over the limit to qualify. Half of his retirement check goes to pay for our medical insurance and the other half buys our drugs, but we make too much money.

This was the final straw. I sat on the end of my hubby's bed and cried. Not just a stream of tears, but gut wrenching sobs. I was beyond frustrated. My hubby, blessed his damaged heart, just handed me tissues and rubbed my arm saying, "It will be okay. It will work out."

A couple of hours pass with me cleaning the kitchen, feeding him, the rabbits, the Guinea pig (I grow fodder for them), all the medicines were passed out his and mine, and I finally felt human enough to venture out the front door to face the public. My little heater in my office that does double duty between my office and my bedroom died. It is Murphy's Law in action today.

I had to go to the Tractor Supply to get my little pets some special hay that they like. There wasn't a speck left in the last bale. Even fresh pulled grass and weeds didn't interest them. Well, it did but not as much as the hay does. They get quite vocal if they don't have it. At least the Guinea pig is. The bunnies just hop from level to level nonstop, frantically sticking their little noses through the cage every time I passed by.

I actually found my new heater at Tractor Supply also. The new one was the same price as I paid for the one that died three years ago. In total I spent $37 for the bale of hay and the heater. What a deal. Extra Bonus. My hubby's mouse had died so I stopped into Fred's, it was on my way home too, and bought him another one plus new headphones. They were on sale too. Do you know how hard it is to find computer mouses now that everything is touch screens? Fewer and fewer places carry them. Under $15 and I had replaced what died taken care of.

The next stop was groceries, ugh! Luckily, it was only 19 items. Staples mostly and a

couple quick cook meals. My hubby can't breathe with strong smells even if it smells good. Anything that has to cook longer than 30 minutes has him gasping. It's a real challenge for the chef in me. Milk, bread, eggs, turkey bacon, and some odds and ends. Unfortunately, it had me going from one end of the store to the other. Since the spasticity is back in my leg too, I have a nice blister on my foot to show for me walking around three stores from it fighting the new AFO. But on the plus side, I can walk almost anywhere without my cane.

Home again with my prizes. I kicked the plastic wrapped bale of hay into the house and where it's suppose to be. A small bale weighs 40 lbs. I didn't need a back muscle strain to add to my misery. My hubby was still sleeping. I spent an hour out and about. I thanked the neighbor for sitting with him and brought the rest of the things inside. I'm thankful that the stores have some really courteous employees that will manhandle my big stuff in and out of the stores for me. It keeps me coming back to them.

I also needed to take our dirty clothes to the laundry. Yes, I could do it at home, but I'm cutting corner. They will sort, wash, dry, and fold it all for 95 cents a pound. I would spend more than that in my homemade laundry soap, water, electricity, and a frustrating time doing it myself. Ever try folding queen sized sheets one handed?

But that can wait until Monday. I'm pooped.

Oh did I mention that I had to move an arm chair to get to the plug for the heater? I over extended and kissed the carpet (rug burned lips)...but that's another story.

Word Search or What a Difference a Stroke Makes

This is not a poor pitiful me post. It is what it is.

It was 3 AM when I heard a feeble cry for help come across the baby monitor this morning. I jumped out of bed and ran I rolled over, grabbed my AFO and shoes, donned my AFO and shoes, pivoted myself into an upright sitting position, stood up and hobbled to my husband in the living room. I was holding the wall for added support because my bedtime medicines of Valium, Baclofen, and Zanaflex still had its semi-potent sleepiness effect on me.

Normally this wouldn't be a problem because  I do it so much, but this morning it was killer. Last night about 11PM my husband upset his drink all over his bedside table soaking everything including his pill box. Four doses of meds gone. Poof. Up in the air like smoke. I'd just taken my bedtime medicines. I got him into a chair, clean up the mess including changing his bed and him, and got him back in bed and comfortable took up most of the lee time between taking my meds and hitting my pillow. I was an hour late because I was working on my sister's shawl pattern to place beading on it. I refilled his pill box and made sure he took his medicine before I wobbled off to bed myself.

I found my husband standing beside his bed fumbling with his bedding and bare butt mooning whoever cared to look. I asked him what was going on after installing him into the rocking chair and putting his oxygen back on.

Little Bit, the cat, had decided to sleep with her Daddy. She couldn't lay on the bed because her older sister, Patches, took up residence in the prime sleeping spot next to him. So she decided to sleep on his bedside  table across his knees. Being a cat, she will sleep anywhere she wants and gradually push stuff away making a comfortable spot. Well, this included a Coke Zero which was a half full can when he fell asleep. You can guess the rest.

After searching through a box of thirty-year old sheets, I finally found a twin sized set of sheets. Why did I search for sheets? All the twin sized sheets were soiled that I bought for his hospital bed. He was safely enshrouded in clean sheet that bear pink, blue, and aqua flowers leftover from our children's childhood. My night medicines are now down to a dull roar and it's almost time to take my morning medicines. If I go back to sleep I'd never wake up in time to take mine or give his.

I sink wearily in my office chair. My office is now located between my husband and my bedroom. I stretch the tense muscles in my neck knowing that a headache will form if I don't. I call it snap, crackle and pop but there is a term for this. I know there is but I can't remember. It's one of know that I know because I've used umpteen dozen times before. It drove me batty trying to think of it.

I make no bones about my cognitive deficit since my stroke. I have a real problem recalling data through the maze of dead tissue...otherwise known as my brain. I'm always searching for words meaning what I want to say. After thirty minutes, the word came to me ...CREPITUS! Thank you www.dictionary.com for how to spell the word from my mangled attempts.

crepitus  (ˈkrɛpɪtəs)
— n
1.     a crackling chest sound heard in pneumonia and other lung diseases
2.     the grating sound of two ends of a broken bone rubbing together 

As an author, many of us search for the perfect word to say what we mean. I was no different. Usually it meant editing a word ten times to hit the perfect word to say what I mean and other times it sprang instantaneously in my mind. Now, after a two strokes, the words just don't come that easily. Not without a pause, a half an hour, or maybe hours of searching. 

On a whole, I'm better than I was just after my stroke when every other word was a word search. Now, it's about every tenth word so I can at least talk in full sentences. So many times I have said, "This is not the right word, but..." when speaking to others and then They will tell me what the word is or understand because of the context it's used. I miss being able to do that. It's kind of a fill-in-the-blank type thing for me now. But at least I can utter more than 100 words.

It may be delusional, but that's my story and I'm sticking to it. Now that all meds are given and taken for the early morning rounds, I'm heading back to bed for a couple hours of needed sleep before it's up again in the life of an author, stroke survivor, and caregiver.

Anyhow, that's my morning so far. How's yours going?

 

Sunday Stroke Survival~ Lessons Learned

Here lately I've been thinking of a mini vacation. The fact that Dean just got back from Italy really started the thought. Darn you Dean!

But then I remember two years ago I blogged about needing a vacation to get away from it all. I was actually planning a writer's retreat of sorts. The gist was to tie up all the loose ends of various books I'd planned to publish shortly. Eat food someone else prepared, no having to worry about housekeeping, to be waited on hand and foot, giving no thought to time, or my husband's care, you know getting away from my regular routine. The kind of pampering everyone needs or wants to recharge their batteries.

Getting away from it all for the first time in ten years. I'd planned for a Memorial Day weekend.  I was planning several months in advance because as any caregiver knows, there are a million things to take of. Spontaneity flies out the window as a thing long forgotten.

Well I got what I asked for. I had a stroke. Now, I can think of several hundred other things that would be more fun and infinitely cheaper. But I got what I asked for. No housekeeping. No cooking. Time away from home. No caregiver duties. Half the time I had no idea whether it was day or night or even what day it was and didn't even care. Waited on hand and foot by others. Every need was taken care of by others.

So these days I'm careful what I wish for. Yes, I would like to go shopping just because and take my time instead of rushing, but my ongoing pressure sore issue makes that a problem. I'd love to go swimming or to the beach, but wiggling out of a wet swimsuit and changing into street clothes is too energy draining just thinking about it. I'd love to take a trip anywhere, but the hospital and I don't mean the falling down kind either. I need a break instead of jumping every time something crashes. I just need a break and I don't mean breaking bones.

The days of my husband wanting me to go out and remember that I'm still living or not on death watch are over. My kids have moved on with their lives as they should. Finally after almost forty year, it's not Momma to the rescue. I should be happy, but I'm not. If not happy then relieved, but I'm not. I am truly an empty nester. Yahoo! Huzzah! I trained them well.

This is not what I expected it to be like. I pictured being free to travel. To be able to do what I want, when I wanted to. Didn't I deserve it? Didn't I earn it? To be honest, I traveled more in the first forty years of my life than the past twenty and that's with kids in tow. I had more freedom with five kids than I do now. My hubby that I was supposed to grow old with is now dying earlier than anyone expected. I'm trapped in a half paralyzed body that just won't behave.

But life is like a roller coaster with dips, turns, and loop-de-loops. It makes the journey less boring and never dull. Every turn brings something new. Lessons learned through pain and trial bring a hard won victory. If it was easy, how boring would that be? Yes, the dips, turns, and loop-de-loops could be less drastic, but then would victory or the triumph somehow be less?

At times I jokingly say to someone, "Want to trade lives?" They shake their heads vehemently in the negative. They walk away being grateful that they don't have my life. But then again, my life isn't so bad. It could always be worse. I could be sitting on the pity pot nonstop and regretting what is gone. I could refuse to see how enriching each twist, dip, and turn away from the expected is. I could stop looking at the glass half full instead of empty...NAH! That just ain't me.

As "bad" as my life is on the roller coaster, there's another one just another one a little farther down the strip that has more plummets, is twice as tall, and has mega corkscrews. On second thought, I'm happy and content with my own coaster. I could be that guy white knuckled, eyes wide with fear, the g-force pulling his facial features out of the norm, and too terrified to scream. While breaking away from what you know is a wonderful thought, there is the unknown out there to be afraid of.

Nothing is impossible with determination.

Saturday Saunter into Anger~ A Rant

I'm just irritated today. I read a post by Diane at The Pink House  on the Corner. She was asked to make a list of daily activities in the care of her husband who is total care after a stroke.

I did something similar couple of Sundays ago here. Although mine was a brush over my husband's care giving focusing on my schedule of what I can accomplish. Do the people that asks this question really understand what we do as caregivers 24/7? Do they think we sit on our hinny's doing nothing except for watching television and eating chocolates all day? I wish. Could they really afford to pay us? Not hardly, the bill would be outrageous!

By the same token, the powers that be wouldn't really hire someone when they can get it free. As caregivers, we give up the life we once knew. We say goodbye to a lot of things we used to have like sleep, vacations, and days off. To care for someone we love better than any nursing home could ever hope to, because we honestly care for them. I know because I did a short stint in those kinds of facilities. Not per a schedule of events, but as it is needed or wanted no matter what we have scheduled.

For years, I have scrimped, denied, and calculated every move I've made around my husband's needs. Scheduling and keeping appointments for fifteen doctors between Georgia and Maryland (just for him), medication lists as long as your arm and around the clock on-call care, monitors and alarms, and not to mention my own personal stuff or running a household. That's what being a caregiver is all about.

I've been his full-time caregiver since 2003. I sold my successful business consulting firm because I couldn't be traveling around the world anymore 75% of the year and care for him too. I took various part-time jobs as a culinary instructor, executive chef, writer and minister since then. Yes, it was my choice, but what alternative did I actually have? Could you see anyone else doing that job? For FREE or minimum wage?

I guess I could have had a live in college student. Room and board for exchange for services. And still, since my stroke I have been considering it again. We are honestly very private people and it would be another schedule to juggle. Is it honestly worth the hassle that might last twenty-four weeks if I'm lucky, before I'd have to go through finding someone else? Better to muddle through on my own. Believe me when I say I've searched for every angle and alternative.

Social Security has denied my petition again. The system is broke and no one know how to fix it. I don't mean to get political on this blog, but its the bureaucracy I'm fighting and I'm fighting mad.

They will willingly pay someone money per hour to care for my husband, but when I do it...forget about how much money I'm SAVING them. Don't forget I'm an RN too with 40 years experience! They couldn't afford me even part-time. Does it count for anything? Nope, not even a kiss my grits. All because I'm the loving wife. It doesn't keep my benefits intact. Mine have been slowly dwindling down to almost nonexistent with my husband's illness. I've checked into assisted living and nursing homes, and the cost is twice as much as we can afford short of selling everything we own. That would only care for us for a decade.

 When I broke my back, had a hip and knee replacement, and had to retire from my nursing career I had applied for disability and was denied then too. That's okay, I scrimped, saved, and went back to college to learn to do something else in my life. Screw 'em.  I thought, after my husband passes away there will be time to build it back up. I didn't count on a stroke disabling me. It seems I'm always saying screw 'em, I'll do it on my own except this time I can't and won't.

When does being a wife, mother, and full-time caregiver become a second class citizen? I've paid into Social Security for decades, but now they tell me..."Sorry we spent it all and you aren't qualified by today's standards." I would have been better off putting my money in a savings account. Earning simple interest I would have earned even more. If I continue fighting the system, I'll be eligible for retirement before its all said and done. Oh, wait. It will have gone bankrupt by then, or I won't have the quarters needed to draw funds because I've taken responsibility for the care of myself and my husband.

What is wrong with a society that allows this to happen? We are not building a self suficient life style but a dependent one. When hard working citizens get the shaft for doing what is right but not profitable. When it is easier to depend and lie to get what we want rather than what we worked for. When is it easier to step on the needs of others to make the almighty dollar to pay for a government already too big for their britches. Where it is easier to tow the line than to fight. It's okay Mrs. Murphey. Yes, you have worked hard all your life, but there's nothing available to you because you fall in between the cracks. To quote Howard Beale from the movie Network, "I'm mad as hell and I'm not going to take it anymore!"

Anyone know where a hemiplegic, who can't speak clearly with a husband that's dying can get a job? Oh, right I'm an indie author who might have another book published in the next two years. There's only a half a million of us out there to choose from. It only takes me half day to compose this blog. It only looks like it is effortless.

I feel my clock winding down and no help in sight. Have I got this last fight against the powers that be left in me? Only time will tell.