Sunday, August 31, 2014

Sunday Stroke Survival ~ Caregiver, The Life and Times

No the time stamp isn't wrong. It is a little after 4 AM. I hear ya. "Woman, don't you ever sleep?" Here's the 411 on caregiving. Pun intended.

I'm talking about my full time job as a caregiver in the wee hours of this morning. I started earlier than expected this morning with a feeble cry from my DH, "Buddy's out!"

That was at 2:30. I'd been in a deep, hard sleep for maybe an hour and a half. Somehow how he'd gnawed his cage closure until it opened. My usual command, "Get in your pen." didn't work. He was too worked up from cavorting free with all the open space of the house, and with the cats and dogs. But no, this AM with my eyes trying to stay open, I'm corralling and coaxing him back into his cage. He finally decided he'd had enough fun  and it was time to go to his pen.  He jumped in and promptly plopped himself in a comfortable position. I fastened his cage with the first thing I could grab, two jumbo paper clamps and pushed a ladder back chair against the door for good measure.

"Take that!" I said with a sleep deprived, maniacal chuckle. My rabbit Houdini could care less at this point. I'm half heartedly afraid that he'll figure a way out. But now, my hubby is comfortably asleep and I'm semi wide awake.

I opened the pet door for the cats to do an early morning prowl and the dogs could go out if they wanted to, and grabbed a Coke Zero out of the fridge. Now I sit in front of this computer until the next round of medicine pass at 6 and 7 AM. You couldn't pay me enough to go back to sleep at this point. You see. I'm not only a caregiver for my husband but for me a stroke survivor with a terminally ill hubby, rabbit, Guinea pig, chickens, cats, dogs, garden, and life in general. AND you thought you had it rough as a caregiver. I'm a caregiver treading water...oh, I forgot to mention...I'm also a part-time caregiver for a father who has rapid onset Alzheimer.I could use a caregiver, but nobody is as good as me. Nobody would be insane enough to want my life.

I could go on and on with the multiple jobs I do as a caregiver. I have multiple posts on the subject which highlights just a glimpse into my world, BUT that's not the gist of what I want to talk about here. This is...

Hope, survival, joy, and peace of a caregiver is what I want to stress in this blog piece. These are the MasterCard "priceless" moments I get from being a caregiver.
  • Nobody can do it better
  • The laughter
  • The companionship
  • Adaptability
  • Never a dull moment
  • I did it THEIR way.

I say this with some shargrin, nobody can do it better than me. Sure, I can pay someone to come in and lightening the load for me...like hospice, but while they are great, fabulous, and awe inspiring they can't take the place of me. What hospice amounts to is a home based nursing home. They do their time and go home to their own lives. This is my life. Everything in my being me revolves around the personal care of the care receiver. Whether it's a hurt bird that my cats bring me, any messes that are created, or anything I attempt. Will it get done by someone else, yes it can, but not with the passion I bring. The motivation is different. Theirs is a job, but with me it's life. Life is priceless.

The laughter of that entity is what I miss the most and often talk about afterwards. Whether they've caused the laughter or it's shared. If you cannot laugh at yourself, you are a mightily sad person. Like the picture says, "Laughter is the best medicine." How many times while interviewing a family before a funeral has someone broke out in laughter. Each and every time. Someone will recount some antic, story, or quirk of the dearly departed that causes a chuckle or two. I wouldn't miss it for the world.

The sharing of laughter is a priceless gift. Laughter even through tears brings joy in the remembrance.

The companionship is based on trust. Whether it's talking about what to have for dinner or final wishes.  Whether it's just talking to a dumb animal who may or may not understand a word that you are saying, or snuggling up to your beloved. Buddy has picked up the habit when he sees me coming of jumping into his litter box, and then hopping to the cage door sticking his nose through the cage openings. When I open his cage, my knee partially blocks the opening and he'll give it oh-so-soft bunny kisses. There is another form of companionship. One of the cats will form circle eights around your legs, or a dog will curling up at your feet barely touching your shoes. All of this is priceless.

Constantly being adaptable to most is a major headache, but to me it brings joy. I never forget to look for the good in spite of the bad. Being adaptable allows you to see the beauty around you. Yes, it's hard to seek beauty when changing an adult diaper, but noticing clear, unbroken skin where a pressure sore once was is reward enough. Stopping in cleaning dishes and peering out the window at the neighbor's child as he examines an ant hill. Allowing for change for there will always be changes. Rolling with what comes and finding the joy in it is probably the hardest thing to do. But when you adapt it's priceless.

There is never a dull moment around this house. Something is always happening. Whether it's a rabbit getting out of his cage in the wee hours, power failures, too much rain, falls, chaos, and mayhem. If it can happen, it will happen in my house. Sure other people have stuff happen in their houses, but coming to my house is a vacation to them. They leave thinking, "I'm glad this wasn't my lot in life."

That's okay. I'm happy and I'll never be bored. I've always been a proactive, grab-the-bull-by-the-horns type of person. Maybe that's why I'm a Taurus. Other people's lives seem so boring to me. I strive for interaction. I've got it in spades and it's priceless.

The best thing about being a caregiver is that I'm giving someone else THEIR way. It's the most priceless gift of all. I've been a caregiver in one shape or form or another my whole life and too numerous to count.

Having the responsibility of the whole caregiving lifestyles can be daunting at times, but brings you immeasurable returns in enriching your life. You get to experience the joys, heartaches, and be a part of someone's life in a way no other has a chance to. To give of yourself. To be the best of yourself. And it's an act of selflessness unsurpassed by none short of dying. It's cost is almost nil except for time, but the whole experience is priceless.

There comes an inner peace of giving it all. Similar to a marathon runner who crosses the finish line at the end of the race. It proves over and over again that you can survive against the odds. There is satisfaction in knowing your have given comfort until the end and it was a job well done. It may not have been pretty in the doing, but it's gorgeous when complete.

Would I swap lives with someone else and see how the other half lives? Not a chance. I could have run and hidden away when the caregiving opportunities arose, but I have found more about myself and what I am capable of being a caregiver. A view most people only dream of.

Even as a stroke survivor, I'm challenging myself daily doing most of what needs to be done as a caregiver. Some things fall through the cracks like vacuuming or dusting, but I'm there in the moment pushing the limits that I might not have done otherwise if I didn't have to. But therein lies an added benefit for me in the future...I'm doing it.

Nothing is impossible with determination.

Tuesday, August 26, 2014

What a Difference a Week Makes

I don't know why I'm surprised, but each time after the Botox kicks in, I am. I had therapy yesterday. The Botox hasn't kicked in totally because there are still grabs and catches during therapy in the bicep, pectoral, and other muscles in my hemiplegic arm. I mean some hard catches that make me take a sharp intake of breath. The spasticity never truly goes away completely. The spasticity just becomes more manageable.

We were warming up with stretches after the heat packs. I know, I know it should be cold packs, but I'm Abby Normal that way. We've done both, but the hot packs work better.

Now pre- AC joint tear, I had recovered about 85% of my shoulder's range of motion. For the first time in two years, I hit the 85% again. The therapist had my arm over my head in the supine position. Yeah, it was passive motion on my part.  My active range will come later, but for now, it's just stretching. But let me tell you, it hurt so good!

She was surprised, because she's my new therapist and hasn't seen this range from me before. I just wanted to see how far it would actually go before the muscles clenched. Yeah me!

Now for the down side. It only took a couple of hours after therapy before I knew we had pushed too far. Yep, you guessed it. The muscles screamed at me and it was ache and groans upon movement of the arm. I hopped in the shower. Alright, it was more like I sat on the shower chair and pivoted into the shower. I let the scalding hot water pulse the sore muscles away. I did take an extra 4 mgs of Zanaflex too.

I got out and was feeling groggily, content over the achievement I made. Literally drifting on cloud 9 because of the extra dose of muscle relaxer. I went through the rest of the evening in the clouds (read drugged fog). Nothing bothered me. A self satisfied grin firmly painted on my face. I did it!

This morning, there was a residual soreness but nothing like the day before. I'll be ready to do it again. A little bit later, I'll try the stretch again via a Theraband tied to my cannonball bedpost. I won't be as aggressive with myself as yesterday because I want to be in good shape for therapy tomorrow.

I've gotten a number of lengths and colors (resistance strengths) of bands over the years and if I need more, all I have to do is ask. They last forever. I've got some that are ten years old. They have a permanent place of honor in my sock drawer. Why do I keep them, you may ask. I just remember my Mama telling me, "There will always be an again." So far, she hasn't been proven wrong.

Nothing is impossible with determination.

Sunday, August 24, 2014

Sunday Stroke Survival ~ Botox and Therapy

Well on the 14th I had my Botox injections. When the medical receptionist called with an appointment reminder, I told her I'd be there with bells on.

When something hurts you when you are already hurting, why get so excited about more pain? Mainly because I know that relief is coming. The idea of needles stuck in muscles and moved around; in and out, a little to the left or right until the most irritating static comes through a speaker on the EMG machine...is no one's idea of a pleasant way to spend a couple of hours. It can take a couple of minutes to find the right spot and that's for one shot.

The whole time I'm practicing my Lamaze deep breathing to keep all my muscles from contracting. After all, it's in my best interest to make sure the neurologist hits the right muscles which are spastic. This go around we are up to 400 units. At over $100 an injection, I really need her to get it right. Otherwise I might as well flush cash down the drain.  It's $100 for just the medicine part. The EMG, supplies, and doctor's fees isn't included in that. One round of Botox injections cost $6,500 billed to my insurance company four times a year.

Once again. I'm thanking God for the cap on my maximum out of pocket expense on my medical insurance. It was one of the first things I double checked on our policy after Obamacare took effect. The only change I saw was our monthly rates increased. Surprise, surprise.

Anyhow, getting back to the injections...
Fifteen injections and a hour and half later, I thanked my doctor and told her it hurts so good. I laughed when I said it. She knew what I meant.

Although I read through the precautions and side effects each and every time before I sign the consent form for the injections, this time was different. Although it was on the sheets I signed, I had never to date experienced them.

I developed severe charlie horses in my leg at the injection site. The only position I could move my leg into to stop it was to lay flat on my back, elevating the leg and bending the leg to a 30° angle. I'd have to hold my leg in that position for 20 minutes, any shorter the cramp would come back. Now my sleep schedule is shot full of holes by giving my husband morphine every two hour, but this was ridiculous. Luckily this only lasted twenty-four hours.

The other thing was a low grade fever. Just high enough to make me feel achy and yucky.  Oh yeah, and hot. As if summer time temps and humidity in southeastern Georgia wasn't hot enough. Compound this with the fact, I'm allergic to aspirin, Tylenol, and Motrin you've got a thoroughly bad situation.

Before my stroke and my husband's health started its serious decline, I could soak in a cool tub to bring down a fever. Yes, I do have a walk-in tub I could use, but really don't have the time to soak long enough to bring down anything. I resorted to big chucks of ice and a basin of water to make cool compresses. When the basin was filled with water and before refilling it again, I would go into the tub and pour it over my head. No sense in wasting ice cold water. Eventually, my fever broke completely the next day. But before it did, I was miserable. No energy but having to do everything for myself and my husband. Achy to the point where it hurt to move any part of my body including my eyes. Of course having Fibromyalgia doesn't help either even though it is mostly controlled by medication..

But that only lasted through the weekend. Now the Botox is kicking in and I started therapy again. I'm as excited as a kid with a new puppy. By getting therapy just as the Botox is getting into my system good leaves us months to work with my arm before the spasticity kicks in unlike last go around with a couple of weeks before the spasticity kicks in.

I needed some hope and optimism in my life. I've had some pretty hard knocks as of late. It feels great to have something to look forward to instead of dread. Everybody needs a bright spot occasionally to restore and instill good in their life and this is mine. Not that I expect to regain the use of my arm in a few short weeks, I know that may still take years, but it is the possibility of  regaining the use that I can strive for. When I related to my neurologist about my hand opening in therapy she was genuinely surprised and excited for me. After all...

Nothing is impossible with determination.

Sunday, August 17, 2014

Sunday Stroke Survival ~ The Power of Encouragement

There has been quite a bit of chatter among fellow stroke survivors in various groups about the power of encouragement. Encouragement can make or break your recovery process. It reminded me of a scene from the Disney movie, Bambi. The scene with Thumper.
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        V (I looked a long time for a downward pointing arrow on my keyboard before I thought of the letter "V" lol)
 

Now I don't know about you, but how many of us heard this as children? Too many times for me. At that age, I wasn't the brightest candle in the candelabra. But somewhere in adulthood we forgot. But I would change this for us to ENCOURAGE.

A funny thing happens when you encourage someone else. You tend to try harder for yourself because you don't want to fail either. Before I step in the path of someone else, I always remind myself to be encouraging and sympathetic, not in a condescending way. Who better than another stroke survivor to encourage another stroke survivor? I've played cheerleader to many as they have played for me.

This keeps me-
  • centered
  • trying
  • hopeful
  • inspired
Even when their outcome is bad-
  • My stubbornness kicks in- that's not going to happen with me!
  • My self-centeredness shows- I'm glad it's not me!
  • My grounding firms- I'm not going to let that happen to me!
  • My empathetical/sympathetic cries out- you poor dear! What can I do to help?
I'm one of the three choices kind of gal. Give up- not without a fight, Give in-not without
a darn good fight, or Give it my all. Can you guess which on I am?

You guessed right. What was your first clue? It's in purple on the picture if you didn't know. The last one if you are color blind.

But what's more important, I believe in the human potential. I'll have faith in you until you prove to me that you are a hopeless cause.

How can you prove it to me...
  • By repeatedly brushing me off.
  • When I can't make you smile. Even the one you are trying hard to suppress.
  • By outright refusal to even try. If you aren't willing to meet me 10% of the way, you are history. But, you'll be welcomed back with open arms when you decide to.
I really don't have the time or energy to convert you to my way of thinking. I can't fight
and encourage if you give up or give in. That being said there are those who rebound into the trying category who I'll root towards victory. I never was a cheerleader in high school or college to spur my team to victory, but I've become a cheerleader to the souls of other people. To me it is more important and doesn't depend on a svelte figure.

People on the outside come in all different colors and sizes, but what really counts is their soul, but basically on the inside, according to Maslow, we are all needy on the inside. It is my function in life to bring comfort to others. Whether it is physical or spiritual. Granted, these days I have little to offer in the physical realm, but if I can brighten someone's day, the pay off is priceless.

By the same token, I tend to surround myself with cheerleaders. They keep me energized to face one more day on this Earth. Eventually even the best cheerleader runs out of fuel. I try to be as positive as I can, but this world can dump some pretty heavy loads on you even with our Heavenly Father's help. I'm no exception.

On those days, I seek out my cheerleaders. They might not even know that I'm in need. I've had quite a number of those days over the past few years. But they fill me up just the same. Prayer works, but there is nothing like the physical boost an encouraging word from another person will bring. Confessions of a minister. It's why this minister has a pastor of her own. It costs nothing but your time and willingness to listen, but it is worth more than diamonds or platinum. No amount of riches or material things can soothe it or replace it.

So if you can't say something encouraging, just listen, or at the very least- DO NOT say anything at all.

Nothing is impossible with determination.

Sunday, August 10, 2014

Sunday Stroke Survival~ Perception of Time

Credit
Time is measured the same for everyone in the world... 24 HOURS in a day, 7 DAYS in a week, and 365.25 DAYS in a YEAR. Right?

What's with that? Why are we taught from a young age and everything revolves around time. It's all put in neat, little, compartmentalized boxes of measured units.Time blogs are all abuzz around the stroke tribe so I'll add my quarter's worth here. (It used to be a penny, but with inflation...)


We are taught from a young age...
  •  Not to waste time.
  • Time is money.
  • Time is power.
  • Just in time.
  • Always waiting for time to do or dreading something.
  • It's time for a change.
  • You're running out of time.
  • It's about time! When you're late.
For stroke survivors it is...
  • Time is brain.
  • 2-4 hours to administer tPa from the onset of your stroke for the optimum recovery... Whatever that is.
  • If you don't recover a loss by the first 30 days, recovery is measured in months.
  • If you don't recover in the golden first 6 months, recovery is nonexistent or measured in years. Yes even decades.
  • Forever (yes, this is time too) as is never (another measure of time) to recovery.
How do we mark time...
  • Watches and clocks
  • Internal clocks
  • Assorted calendars to help us remember important dates and times.
  • Alarms go off to remind us.
  • Something, anything, to make us keep track of time.
My question to y'all is...WHY? What is so all fired important that we have to mark time like a row of soldiers marching in cadence?  Oops, there's another reference to time. From the day we are born to the moment we die, we are watching the clock. Well, as a small infant, it's actually hunger or comfort that marks time for us.

Whether you do something or not, time continues to pass us by. Time stops for no one. You ever hear that one before?

I mean...
Time flies by
Time flies when we are in good company, or are enjoying ourselves.
"But it was just 9:00. How did it get to be midnight so fast!"
When you are older time moves at a faster pace than when you were younger.
"What it's my birthday again!"

Snail's pace
Remember when you were waiting to turn 16 and drive a car by yourself legally?
How about 21 so you could legally have an alcoholic beverage?
Or that last ten minutes before you get off from work on a Friday with the weekend off?
It went by at a snail's pace, didn't it?


Even a clock with no hands marks time
Time never stands still. It's always in motion. There's no way humanly possible to stop time while alive. It's all about your perception of time. If it wasn't for clocks and calendars everyone would be on their own time schedule sun up to sun down. Oops there's another way of marking time.

My point is this...
Recovery will or won't happen when it wants to. Worrying about what you don't recover doesn't help you recover. I used to be concerned by the passage of time, now I'm not. I guess that happens when you get to be my age and have my faith or point of view. What will happen; will happen or it won't. How long does it take to get from point A to point B is irrelevant. How long it takes is entirely a personal journey.

No, I'm not saying each stroke is different in recovery, but their are certain truths that may or may not apply to recovery. Does it sound like I'm writing in circles? It sure feels that way. It takes two years for damaged nerve cells to regenerate. That's a fact. The brain has the capacity to relearn learned behavior. That also is a fact.

But if strength of will and never ending therapy exercises is the way to recover, I should have recovered everything I lost with my first stroke and my second by now. Because there are very few dyed in the wool, more stubborn, or tenacious stroke survivors out there than I am in my quest to recover. I mean four plus hours a day, seven days a week for two years. There are just no guarantees or program that works for everyone. I honestly wished there was.


So as a stroke survivor or a person in general who focuses on time passing, my advice is this...
  • Stop!
  • Carpe Quo! Seize the moment!
  • Don't compare yourself with others.
  • Nobody knows "when or if" it will happen. Because regardless of what you think. It's not your decision it's God's and/or you.
  • Be happy the way you are because you could be in a worse situation.
  • Go out and enjoy this life you've been given because otherwise you are wasting time!
Nothing is impossible with determination.