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.

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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.

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