An MSA Caregiver on a Yo-Yo


How does a yo-yo go? Up and down, up and down, nice and steady, slow then quick.yo yo

This is how I feel. Slow and sleepy. Sometimes full of energy. Days of quick thinking, others too tired for one thought.

I wonder if this is how other caregivers feel? I wish in some ways they did, then I wouldn’t feel so stupid. And other ways I hope they don’t because this is no fun.

It seems anymore Al’s body is totally frozen. Me or the caregiver do everything we can to keep him comfortable. He has some good days which allow some laughter in the house. But mainly there are bad days, scary moments, when we hold our breath, wondering if this will be Al’s last day.

You know? I hate feeling that way. Who in the world keeps track of breathing, pain, and lack of movement, coughing, swallowing? It isn’t even normal. To a stranger it may seem like this gal is a human freak.

Today, Al was in one of his needy moods. He wanted everything and nothing. He was never satisfied. His biggest complaint was he wanted out of bed. I have heard this many times. I know that last winter when I was sick for 30 days, I spent most of it in bed.

I know how much worse I felt not being able to feel free enough to move around. I kept pondering on that as I kept hearing Al pleading to get up. So while the caregiver was here today I decided to do an experiment.

It wasn’t so much for me. I already knew the answers. It was more for Al. I wanted him to see for himself that he could not get up. I guess it was a test that I hoped Al passed mentally.

So the caregiver and I grabbed a hold of him from all sides and we set him on the side of the bed. The first thing I noticed is his legs. I hate to be so graphic but in order for you to understand how they reacted I have to speak it.

His legs reminded me of a fish just out of water. They flopped around with no control at all. Soon they quieted down and just hung there. I then asked him how he felt but he didn’t answer.

He wanted to stand. Before I answered that I asked him to hold his head up so he could see what he was doing, but he failed. He raised his head about half an inch but it wouldn’t budge above that.

I asked him to raise his legs to see if he had any control. One leg went up a couple of inches and the other didn’t rise. With the head being dropped so long I was afraid he would cut off his own breathing, so we placed him back in bed.

He still told me he wanted to try to stand. So I guess my test failed and he repeated his request for getting up. Now this is emotionally draining to me. I couldn’t please him and I couldn’t do as he wanted.

We are now using the fingers for yes and no answers. One finger for yes, two for no.  I can no longer hear or understand what he is saying. When I lean in close to him I can hear his voice, but still can’t make out the words.

Now he is laying there with no facial expressions. He ate two bites of supper. His hands are so swollen and puffy. I asked the nurse why this has been happening the past few days and she stated circulation, or lack of.

I hear Al rattling but we can’t use the Aspiration machine as the mucus is too far down in his throat, and yet his lungs don’t sound bad at all. He is not swallowing his own drool, and I think it is mixing with the mucus, making him cough so much.

So this is one of those bad days. I get so tired of reading my print back and seeing what a pathetic creature I have turned into. I have considered not writing anymore until this is over, but I don’t think I would survive as well as I have without your comments.

Let’s just face facts. I am not as strong as a Christian should be. I get too tired and too emotionally drained. I try, I really try to be positive, but it is darn hard, let me tell you. I keep finding myself begging God to release Al from his pain. Thousands of prayers are being said for him daily and yet he lingers.

If only I could make these last days worth living, but alas, I can not. All I can do is hold his hand, rub his arm, reposition him, keep him dry and offer him food. The rest is up to him and God.

I carry guilt over not doing better for him. Sorrow from watching him become lifeless, and anger at why he is being allowed to continue on with no purpose. I am sorry, today is one of those bad days. I hope for a better day tomorrow, but I need to be realistic.

Al has seen our parents and Jesus. He truly is the lucky one. He is my brother who has fought this battle with all his might. His legs may have flopped like a fish out of control, but his soul is beautiful like the fish of the sea.

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My Stress Relievers

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I admit that the stress level I carry with me daily is high. I won’t explain why. I know for the most of you; you don’t need an explanation.

There is Al’s bedroom filled with a powerful illness, lots of vintage cars and plenty of coca cola items.

Then there is the rest of the house where I try to keep it peaceful and serene. I struggle to rid the stress. I have a hard time but I do survive through many prayers and my own handy work at feeling like I am not living in a sick house.

So here are a few photos I took tonight to let you see how I try to relax.

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Ideas Anyone?


I loved it that Al was chatty today, but I hate what is happening inside. We are becoming quite constricted on what Al can eat anymore. Solid foods are out. puree and mashed is in. Red sauces are out, causing him heartburn because he barely eats. Creamy foods, puddings and ice-cream and milk make his mucus worse, thus he chokes and coughs.

All I seem to be able to feed him is mashed potatoes. Tonight he ate about five bites of macaroni and cheese. He was able to eat it, but it was a bit of a struggle for him. He is so thirsty the past three days. He just can’t seem to get enough fluids.

I was explained to that at this time of his life thirst is a big issue. I am not sure why. If any of you know let me know please.

His arms are contracted so that they always look like he is praying. I keep putting them to the side of his body but they just creep back to the center of his trunk.

He didn’t do bad today. I didn’t hear much complaining. Mainly heartburn and his heels hurting. His heels are constantly on pillows but he is complaining of foot pain. I also was told that at this stage of a person’s life, with his oxygen level being now 74, that he will feel a tingle in his feet from lack of circulation.

What else will happen before he is out of pain? I don’t know, but I am hoping that some of you thinkers out there can help me with a more appealing menu for him. I will be going to the grocery store tomorrow or Sunday.

Thanks ahead of time. I know some of you will give me some great ideas.mashed-potatoes-520

The Brightest Star


The lonely soldier boy looked up at the stars. It was Christmas night. He was cold and had nowhere to go. He had served his country well. He had stripes on his sleeves and was proud.

His intention was to come home and marry his girl. He had been planning on marrying her and then the letter arrived. His country needed him. But while he was gone, she got bored and found the companionship of another.

When he knocked on her door the day before he learned from her mother that she had up and moved in with some guy. Through tears she expressed how sorry she was. The lonely soldier boy walked a way with his head hung low and his hands in his pockets.

He went back to his home but when the door opened the only welcome he received was the squeaky door. You see while he was gone, his parents had been killed in a car accident.

Something went a miss and he didn’t learn about it until way after the funeral was over. When he finally read the letter that was given to him all it said was that his parents had been killed and the home he grew up in was his.

Silence rang throughout his head. He put his hands over his ears. He didn’t want to hear anymore. He wanted it to stop, but it kept ringing and getting louder and louder. He buried his head in his hands and he wept.

How could this have happened? He lost his girl, he lost his parents, and yet he had done what was right and served his country well. He walked from room to room touching trinkets and remembering back to earlier times.

He got his duffel bag and started placing ever so carefully pieces that reminded him of happier times. He packed some clothes. He walked out into the night air. Pulling his coat closer to his body he walked.

No where in particular, just walked. He ended up at the cemetery where his parents had two markers staring at him. He sat down on the snowy ground and pulling the shiny star out of his bag, he placed it in front of his parents names.

He cried out to his parents begging them for answers. He thought how easy it would be to kill his own self so he could be closer to those he loved. He stared down at the cold ground waiting for some kind of signal that they had heard him.

Hearing nothing he stared off into the distance. Far ahead he saw a beam of light shining down towards the earth. His eyes followed the path and when he looked up in the skies he saw the brightest star he had ever seen.

Like the shepherds followed the star when Jesus was born, the lonely soldier boy followed the beam of light. He walked for what was ever and soon he was standing in the most beautiful house he had ever seen.

When his eyes adjusted and he was able to make out objects, he saw his parents. Beside them were members of his extended family. They came to him and enveloped him with love and hugs.

God had heard his cries, and now he was not the lonely soldier boy any longer. He was in the haven of love, the kingdom of all heavens and he smiled once again.

animationStar

Daily Prompt; My Precious


http://dailypost.wordpress.com, DP, Daily Prompt

Who is the person in your life who can do no wrong? Describe this person and tell us why you hold them in such high esteem.

Photographers, artists, poets: show us PRECIOUS.

Who is the person in my life that can do no wrong? I am sorry, I can’t think of anyone who can do no wrong except one lady. I used to think there were two. My best friend, L.S. and my dad.

Now being down to one I feel so lucky that I have that very best friend who I think the highest regards for. Who in my eyes does no wrong.

Now when I was a kid, not too many years back I had a few favorite people I felt could do no wrong. Idols, who I looked up to. Visits I got so excited about. Smiles so big that they showed missing teeth. Yes, those were the days. Can you guess who they were in a young girl’s life? Let me show you by photo only. I know you will guess then.

tooth fairyeaster bunnysanta clause

A Good Laugh Was Needed Today


Today I escaped the house for an hour. I had to go to the Pharmacy and pick up a new medication for Al. Lyrica, the doctor is hoping it will help his pain while his body contracts into a smaller body.

I went by my old elementary school on my way home. I don’t know why I revisit places like this. Maybe I am yearning for my free youth. Maybe I enjoy the memories. I stopped in front of the school and had a chuckle.

It was recess time. Remember those recess times? Freedom from studying, being quiet and listening to the teacher talk on and on and on? A time to forget the world and frolic and play.

I can remember catching grasshoppers in the back yard of the school. I remember playing tether ball. I really liked that game. A ball on a rope and a single pole. Playing it with another student trying my best to get it to go around past until I scored a win.

Playing chalk hop scotch and jump rope. Even as I sit here writing I look at my life now and back then and I would have never dreamed that it was going to play out like it is. Here I am caring for my brother. I have done a lot with my life and yet nothing that anyone will remember.

I sat in my car just smiling and then it dawned on me the weather. It has been very warm for December here lately but that all changed this afternoon. Now we are in the thirties and we are going to only be in the high of twenties for a few days.

But when I was at the school it was still forty something outside. I watched the kids as they ran and played and part of me envied their free spirit. The innocence of a child not having to worry about sick people, or bills or how they are going to eat.

Then I looked down at myself. I laughed out loud. I had a sweatshirt and sweatpants on. The heater was on in the car. All my windows were rolled up. The oldies station was being heard on the radio.

As I enjoyed watching these young people I saw that their clothing was quite different from mine. Some had shorts on and sweatshirts. Others had jeans and jackets wrapped around their waist. Some had jackets that were unzipped and flying in the breeze.

I laughed so hard when I realized I was or am becoming my parents and grandparents. I used to laugh at my family because in the fall I was wearing my shorts and Mom was saying she was so cold.

Where does the time go and how does it slide so quickly without us realizing it? In my mind I am still young. There are more and more days that my body reminds me that on my birthday I will be that big scary number 60.

I watched them for a bit longer and then started the car. I turned my fifties music up. It was Elvis Presley singing Rubberneckin.  I had revisited my youth, picked up medications for a very ill brother, and noticed time had been ticking all these years. I was definitely becoming my Mother.

 

Elvis-Presley

Reliving The Days


 

Reliving The Days

Pictures from long ago

Bring a smile to my face and so

I will relive what once was true

Al and I standing under the tree in new shoes

A brand new toy did Santy bring

For Mom it was a sparkly ring

Dad smiling from ear to ear

With all his tools and gear

Crackles of laughter I still hear

As I am sitting here

Remembering the good old days

When life was good no illness in the way

And as I smile and remember back

The tears do fall upon my lap

As I see how life really goes

And there is one thing I know

I am thankful for my memories today

As I relive the old- fashioned days.

Written by,

Terry Shepherd

11/29/2013

me and brother

The Fox, The Rabbit and The Raccoon


fancy rabbitFancy rabbit,Fox-animals-5370160-620-476 Foxy fox and Roxy raccoon were all friends.ANIMAL RACOON

They all met at a Thanksgiving feast a few years back.

Everyone had been invited. The squirrels, birds and groundhogs.

Each brought their favorite treat. There was loud chatter as neighbors got to know each other and the babies played together all day long.

Three different personalities clicked. Fancy rabbit was unusual to others. He dressed in the finest clothes. After meals he puffed on a  cigar the size of a large carrot. Foxy fox was the most clever of all, or so he thought. The others thought with his smarts he could teach them new ways of getting food much quicker. Roxy raccoon was a little chubby and always seemed to have lots of food. He was sneaky too and never got caught when he was rummaging through human’s  trash cans.

So the three hooked up and remained friends from then on. Anywhere you saw one you couldn’t help but notice the other two. Each of them took a lot of pride in themselves. They frolicked through the woods and people’s yards.

From each other they learned to steal food not only from trash cans but to hide behind bushes and sneak in through open windows. Roxy raccoon taught his two friends how to use the tree as a jumping pad and hop onto roofs. He showed them how to eat holes in the roofs and lower themselves down into the food area, but his buddies were too afraid to try the climb. That seemed pretty high to them.

They each helped the other when needed. One time Fancy rabbit’s home had been invaded by water. Flooding was taking a way all his pride possessions. Foxy fox dug a tunnel for him and this allowed the water to drain faster. Roxy raccoon found bits of plastic and this was used to cover up all of Fancy rabbit’s furniture.

Now this is what true friendship is all about. Helping others, not caring what background each other had. They had picnics and laid under the breezy branches at nights. Each was on guard for the other at all times.

When babies were sick they each took turns watching over them while the others hunted for food. When it came time to teach the young to hunt, they all gave their advice and in no time excellent hunters were bring back fine kill.

Fancy rabbit’s had four kids. Foxy fox had two kids and Roxy raccoon had not been able to have a family. Roxy raccoon was really bothered by the fact that there was no one to teach to hunt and to watch grow up. He started to stay in the background when there were gatherings. He became more into himself and didn’t talk as much.

His friends took notice of this and tried to find the truth, but Roxy wasn’t opening up. Roxy became so restless that he wasn’t sleeping well. He found himself over at Foxy’s grandkids home just watching them play. He watched Foxy teaching them grown-up games. He heard the laughter and could sense the closeness between the kids.

One evening when he was extra restless he quietly went over to the house he always watched. It was quiet. Everyone was sleeping. He crept up closer to the house. He used his tricks and jumped on the roof, chewing a big enough hole  to slide down the inside of the house.

He made his way to the kids bedrooms. He went from room to room and would sit in the doorway just staring. Watching them sleep, listening to the snores. Roxy got to the place a routine was formed. Night after night he made his way over to the house.

But this one night when he landed on the floor he was standing right in front of Foxy fox. With anger in his eyes and teeth showing, arms crossed he immediately asked Roxy raccoon why and what was he doing there.

Roxy raccoon was too afraid to tell the truth. They both turned around when they heard a patter at the door. Foxy fox went and opened it and let Fancy rabbit in. Now here were all three best friends standing on guard of each other.

Each waiting to be attacked. Each instinct was in full force. Again Foxy fox asked Roxy raccoon why he was there.

Roxy raccoon hung his head down low and pretending he was brushing something off of his paw said, ” Nothing. Just nothing. I wasn’t doing nothing wrong.”

” Now come on Roxy, you know me. You wouldn’t be coming over here during the night, breaking into my roof, destroying it by chewing a hole in it and then staring in at my kids while they sleep.”

Roxy raccoon turned to walk a way and Fancy rabbit hopped over to the door and blocked it so Roxy could not leave. ” Look here Roxy. We are your friends. We do everything together. What ever is wrong you need to tell us. Let us help you. Haven’t we been friends long enough that you can trust us?” asked Fancy rabbit.

Roxy raccoon covered his striped eyes with his paws and started to weep. ” I, I , I am so lonely. I just want a family too. I want to be like you and show my kids how to find food, and chase animals.”

When the other two heard his story they walked over to him and they put their arms around their friend and patted his head trying to make him feel better. ” Well Roxy raccoon, I can sure understand what you are saying. I guess I would feel the same way if I didn’t have my own family. But that’s no reason to sneak in here and scare the hair off our backs is it?”

Fancy rabbit shook his head and Roxy raccoon looked down at the floor.  Foxy fox tapped his chin while thinking of how they could help their friend feel better. He paced the floor back and forth thinking. Pretty soon the other two followed him and they were pacing and thinking.

Suddenly Foxy fox stopped. The other two bumped into him knocking him down. Foxy fox picked himself up and brushed grass off his clothes. Soon all three were laughing. ” I tell you what. I think I have an idea. What if you took care of our grandkids. You know the parents have a lot of work to do. We each here have been taking turns keeping an eye on them, but I got things to do myself and I am sure Fancy rabbit has some work waiting for him. So why don’t you become the grandpa of all the grandbabies?”

They each looked at the other. Foxy fox and Fancy rabbit nodded at each other in agreement on this idea. Roxy raccoon dried his tears and looked into each of his friends eyes and then smiled real big. ” I like that idea. I like it real well.”

From that day on Roxy raccoon grandpa took over when everyone was busy. He played games with them. They went swimming and found new hunting grounds. Each night when he went to bed he was worn out and he never was restless again. The End

Moral of the Story; We all need to feel we belong, just like the creatures of the world. Showing love and friendship is the best gift you can give. When you are shopping for gifts this year at Christmas, and you are complaining of the extreme prices, always remember : friendship is the best gift you can give and it is always free and I am pretty sure it will be welcomed. Terry Shepherd

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#FWF Free Write Friday; Gratitude


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Memories of yesterdays

Wishing I could go back

Laughter and chatter

Kids racing outside

Daddy’s snoring

Mommy’s gossip

My head laying peacefully

In Grandma’s lap

Belly full yet more dessert

Today I didn’t hear no

Oh what I wouldn’t give

To see Grandma sitting right there

In her comfy recliner

Daddy laying on the couch

Aunts doing dishes

A table full of food

Candles lit in the middle

All holding hands saying grace

Tears come to my eyes

As I go back in time

And remember those days

Of freedom and loving

Now many years later

I have my own children

Forming new memories

But I can’t help but to mingle

Intertwine the old with the new

A complete life of me and my family.

Written by,

Terry Shepherd

11.22.2013

Blog of the Year Award 1 star jpegthanksgiving tablebook4free-write-friday-kellie-elmorehttp://kellieelmore.com/

 

Weekly Writing Challenge; Traces


http://dailypost.wordpress.com/2013/11/11/weekly-writing-challenge-traces/

#DP Challenge

Using the story behind the photo above as a jumping off point for this week’s writing challenge, we want you to talk about leaving your mark. For the fiction-minded, fill in the mystery behind this photograph. Who were these flowers left for? Was there a message included? Is there a mysterious reason why these flowers are covered in dust, but still appear so young?

 

Every night after the lights went low, busy fairies came alive. Bustling through the cemetery. Oh there was plenty to do. Everything was groomed but one potted plant. There was trimming of weeds, picking dead blooms, applying fresh fertilizer. Each night the glow of their shiny wands made a person feel like they were seeing the reflections of twinkling stars falling to the earth.

There were many fairies. It all started in the year of 1850 when the lady of the southern plantation took ill. Annabelle had been a beautiful lady.southern belle She was not only the wife of a rich husband but her heart was bigger than any pile of gold.

She had many slaves that worked for her. In fact this was one plantation where slaves begged for her attention so they may earn a chance to work inside for her.

While her husband was attending to business, Annabelle was helping where she saw fit.

She helped teach young mothers how to bathe their new babies. She mended holes in clothing for the farm hands. At the holidays she made each of them special plates of food and each of the children could count on getting a present of their very own.candy canes

When one of the children became ill she fetched him and brought him to the main house. Here the child was nursed back to health if at all possible.

But one day Annabelle felt ill. The house was quiet. She hadn’t been seen any where outside the house.

Buzzing went through the slave quarters as questions remained with no answers. That night Annabelle’s husband had come home.

He had a rough day. Sales were low. He was hungry and tired. He needed someone to talk to. He went straight to the drawing-room where he was hoping she would be.drawing room

The room was silent. He went through the rooms looking in the sleeping quarters  last.

There lay Annabelle ghostly white. He went to her and sat on the side of the bed. Speaking to her he received no response. He felt her forehead with the back of his palm.

She was burning up. He covered her gently and quickly exited their room and dashed out the main door. Hopping on his horse he took off for the five mile ride  to the doctor’s office. Beating on the door for what seemed minutes, the doctor opened it.

Explaining the symptoms he observed the doctor picked up his satchel and hat and readied his horse. The two rode hard back to the main house. Once inside the doctor performed an examination.

Nodding for her husband to follow him out into the hall, the doctor explained that his wife had little time. She had come down with the fever and there was no cure.

Her husband’s eyes filled with tears as he walked the doctor to the front door. Shaking his hand he watched until he could no longer see the horse and rider.

He went directly to the slave quarters. He ordered them to gather round. He explained his wife’s condition. He told them this was very contagious, but he needed the help. Which ones would be able to come to the main house and be of service?

Several  of the ladies raised their hands  in the air. He nodded at each one and they got their belongings and followed him back. For eight days the fever remained. Anabelle grew weaker and paler. Food was offered but not taken. Visitors stayed a way for fear of the sickness getting a hold of them.

On the eighth day Anabelle died. Her faithful followers remained behind to tend to her and the funeral but one by one each passed also.

Ever since the last one passed, the flowers that were left by Annabelle’s grieving husband had remained untouched on her grave. The fairies which were once her helpers in distress watched over her as she had once done for them.

To this day if you visit the old cemetery, and you sit quietly in the night, you can see the reflection of the twinkling stars falling to the earth.

evergreenflowers