One Day At A Time


My girlfriend left this morning after I cried too many tears. She did so much in helping to get my mind off of what is happening.

It is bitter cold still. It seems as if this winter is never going to ease with the cold. I looked at the Farmer’s Almanac and this crap continues on through February. What a bummer.

The nurse came this morning. She took off the Texas Catheter and placed a permanent internal catheter in. He did well with it after being medicated for relaxing purposes. His hands were so swollen and he just wasn’t able to release all of the fluids so this is supposed to help.

I am so tired but even more so since my friend left. She never knew what a rock she was and how much I leaned on her. I am so glad that most of us have that rock in our lives.

When the nurse finished with Al she sat and talked with me for a while. She said that she thought Al probably had days, possibly a couple of weeks but nothing in months.DSC00183 Last night Rhino, the cat was getting in my friend’s knitting basket. He was fascinated by the yarn.

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Please Pray For A Quiet Release


Last night was rough for Al and for me. Hospice came and with a Tylenol suppository the fever was brought down. After getting Al as comfortable as possible she took me in the living room so we could talk.

The gist of the conversation was his heart is shutting down. There is nothing that can be done anymore. For the most part my hope is now gone. I pray for a quiet and peaceful release.

This morning Al has a fever again. The reason for the constant fevers is his body is shutting down. There is nothing that can be done for the swelling. He is complaining of not being able to breathe, so I am getting off of here.

I had many nightmares of death during the night. I had real tears. I am so tired but I must go on for Al. The caregiver just arrived. I will talk to you all soon. Please pray for a quiet release. Al has been a fighter all along but now he just needs to relax and go home.

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The Vision


Short and sweet because I am trying to deal with what just happened. The only reason I am  posting is for your comforting words because I am weak.

Al and I have spent some wonderful quality time together tonight. But not all of it was good. He told me he felt like there was a big elephant on his chest. Then he told me he thought he was having a stroke.

I checked his vitals but they are not out of the ordinary of what they usually are anymore. Then he told me he saw trucks driving out of Egypt and in front of them was ladies with wings………………..

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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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Same-O


Is it because it is the end of the year? Or is it because the hype of exciting and fun days of Christmas is gone? Or maybe it is because Al‘s illness just reminds me of an energised bunny; keeps going and going.energizer bunny

Is it because it is cold and dreary outside? Wow, too many questions. Now let’s look at the flip side of that coin.coin

The facts are I am sick at looking at myself in the mirror. No real hairstyle anymore. No cute clips, no real make-up.

Same old clothes, same slippers, same old thoughts.

Now this sounds like a woman who has been in a pile of knee-deep crap for some time.

I think this woman needs a change of pace. But how can I do that? I need, I want, I yearn. I sound like a whiny toddler. I am restless I guess. For years, and months, weeks and days, life is going in one direction.

A direction that will bring nothing more than sadness, tears, and a void in my heart. I want to stop it. I want to flash back to earlier times. I want to pull my hair out.

No wait! I want to roll my hair up, put the make-up on. Squeeze my fat feet into those four-inch spikes. Put that mini over my plump thighs. Put on a push-up bra and pretend I have something to show.

How about some long glue-on french nails? Some plum lipstick and some gorgeous blush. Maybe I will even get in my trunk and pull out those fish net panty hose that were so popular back in my day. What do you think? Do you think I am ready for a change?

Who’s with me? Paris, Hawaii, The Bahamas? Oh wait, I don’t have any money.

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