Tag Archives: Sibling

50 Years Doesn’t Change Too Much

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Holding Al’s hand and listening to him breathe I find myself racing back to my past. I am standing at the end of the lane. The small dead-end lane leading to no where that the world recognizes; but to all who lived in the tiny street, this was home.

I pull myself in two pieces, a child and a woman. I see Al, my little brother with his big blue eyes and wide innocent smile. He is wearing his hat with the ball on top and the flap ear pieces that cover when the winds blow.

He wants to stop at the candy store. A tiny white  house that was converted into a public grocery store. Oh this was no ordinary business. This was a mom and pop store. Filled with those emergency food items for moms. Milk, eggs and bread. For dads there were car accessories, batteries and fishing lures.

For us kids it was a place better than heaven. Glass cases filled with shelves of candies. Fingerprints remained from other little fingers of kids pointing to this candy and that. The owner sharing freebies of new candies that came in. Wanting our honest opinions he would say. What did we really think of it?

Al tugs at my jacket and points towards the door with the big silver handle. I can’t resist. I take his hand and we walk in to the smells of friendship, hugs and laughter. Al puts his fingers on the glass placing his individual mark that he was here also to pick his favorite pieces.

I had a quarter in my pocket. I pulled it out and Al looked at the shining coin and we both grinned at each other as we knew we were leaving the store with pockets filled with special treats.

All the way down the lane Al licked his sucker and I made my pieces of chocolate melt in my mouth until I could no longer feel it. About half-way home I let go of my brother’s hand and I skipped and jumped all the way to the front door.

I would look back and see Al looking at me, frozen in spot, afraid he would be forced to walk the rest of the way home alone. I hurried and threw open the door and tossed my books on the couch and took off running for Al and grabbing his hand we walked home hand in hand, me his big sister and protector, he the scared little boy of the big world..

So many memories, so many times the two of us did this together. Now as I stand here looking down at my grown brother’s face I weep into my heart. I see the big blue-eyed child now laying here afraid once again.

Afraid to let go of my hand. Afraid he will be left behind. Afraid to walk ahead without me. My legs feel weak and my heart sobs as I see where life has not really changed that much through these past 50 years.

Al and I still need each other. He still seeks me out for comfort and I reach out to him today as if once again I am caring for that little boy all over again. God has decided that we can’t get too much closer as brother and sister.

He has discovered a new job for me and Al. He wants Al to help him with some project way above what  my own imagination can dream.

As I look into my brother’s face and I see the pain and sweat from this terrible disease my heart finally breaks in two slices. I look down at his puffy and swollen hands and remember how once I had grabbed hold and walked him into that little store. Now just touching his hand makes him flinch in pain.

His legs that once rode swiftly by me on his new bicycle now lay frozen in time. His feet that once walked side by side with me now lay twisted. No longer the shape of what we know of as feet.

I can no longer understand Al’s words but I can still read his eyes and he is letting me know he is afraid. I reach out to him and tell him I love him. I assure him I love him and I will not allow him to walk this journey alone, just as I didn’t let him walk that little lane from the candy store home alone.Al and me Christmas 2013

An MSA Caregiver on a Yo-Yo

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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.

fish

Venting

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A blog is a place to ask for support, tell wonderful news and share photographs. It is also a firm ground to vent, and today this is what I am going to do for my first post.

 

The house is very quiet right now but my head is doing its fair share of stirring up a small funnel cloud. Al did go to Day Program today. He started waking up at 4am wanting to get up. Each time I had to tell him it is not time.

 

He watched TV and I laid in bed under the warm covers listening to the baby monitor and trying to close just one eye. I was still tired. At 9am, the shower gal had still not called. I went in to check on Al and he was crying.

 

Fear of no shower and evidently stressing over not getting to go to D.P. was bothering him. I used the phone and called the office. A message was waiting for me. It seems that although the shower gal called, our phone never rang. She was on her way though.

 

I explained to Al that she was coming but by then he was too much into the stress part and he wasn’t truly listening to me. It seems that this shower gal is coming later and later. She gives Al a very quick shower and he is still damp when he gets on the bus.

 

We all know what this can do to a healthy person, let alone an ill patient, especially as it gets colder outside. She finally arrived and was surprised that Al was getting a shower instead of a bed bath.

 

I explained to her that she should just always assume he will get a shower and when she calls to let us know she is on her way, I can tell her then if he is not going to D.P. She was cool with that.

 

She took Al to the bathroom. Now in the bathroom there is everything ready for her. I have already shaved Al and brushed his teeth. Towels, wash cloths, and his gait belt is all waiting and ready.

 

I came out to my computer and turned it on. I don’t remember what I was thinking I wanted to tell her but I popped my head in the bathroom to say something and my mouth dropped immediately.

 

Al was taking his three steps, and actually doing rather well considering the past four days, but, she was not holding on to him at all. I immediately with probably a stressed voice told her to hang on to him.

 

She said ok. I told her, ” I don’t ever want you to have Al in any standing position without hanging on to him. He could fall so quickly but if you are holding on to him at least you can let him slide down your leg and he would have less than a hard fall.” I had always learned this in my own 23 years of experience and training.

 

She just looked at me and said, ” I hear what you are saying, but he is a big guy. I will never hold on to him so tight that if he falls he will hurt me.”

 

I think I was speechless and then the sister part of me kicked in and I asked, ” Do you know anything about M.S.A.”? She rattled off the long name for it and explained she doesn’t get involved with the diagnosis, she just gives showers.

 

I took a deep breath so I could speak in a nice manner and I explained about the wires in his brain not working. I told her that although he is standing alone at this moment, the very next second he can buckle and go down. I also told her that I never wanted to see her not hanging on to him again and to use the gait belt for better control.

 

She came back with she wasn’t hurting her back over him. I left the bathroom fuming and confused. Under normal conditions I would have reported her butt to the office, but on the other hand, the staff seems to have a hard time getting employees to come up this far, so I feel trapped in some ways.

 

I want Al to have his shower, and yet I didn’t like her comment. I didn’t like that she wasn’t trained on M.S.A. and knew nothing about it. Maybe I am just too protective but Al has fallen even in my care and the bathroom is tiled, not carpet. Well, crap, I just don’t want him to fall period, and for her to say she was more concerned about her than him, just made me swallow wrong.

 

I am going to the grocery store and stocking up because now I never know if he will go to D.P. the next normal scheduled time or not. I want to enjoy my time out today. I haven’t left the house since last Thursday, so I had to write about my thoughts so I can at least enjoy the trip to the grocery store. Now that sounded pretty bad didn’t it. Terry is going to get all excited about grocery shopping. LOL

English: A funnel cloud just east of Salina, K...

Chapter 16

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From the point of Thanksgiving until December 1 life spun in circles. I didn’t see Al in this time frame. In fact I didn’t see anyone. I worked my job and when I wasn’t there I was with Dad.

Dad and I  had quite a few talks about things kids don’t usually…

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Chapter 16

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From the point of Thanksgiving until December 1 life spun in circles. I didn’t see Al in this time frame. In fact I didn’t see anyone. I worked my job and when I wasn’t there I was with Dad.

Dad and I  had quite a few talks about things kids don’t usually discuss with their parents, but Dad knew he was dying. He talked to me about Al and he discussed his personal will with me.

We didn’t do anything when I was with him. I talked and he was quiet. I gave medications and the only time he would eat is when I brought him egg drop soup. His sister dropped by more often. She and B would spend time chatting and I stayed by my Dad’s side.

On December 1, Dad was in so much pain. He couldn’t sit still. I was constantly changing him from the chair to the bed. There wasn’t a position that was remotely comfortable for him.

He finally laid down on the bed. I didn’t even think for one second if it looked bad or not. I laid down on the bed beside him and placed his hand in mine. He quieted down and for about fifteen minutes we lay there with me telling him how much I loved him.

His eyes were closed but I knew he could hear my words. Then he opened his eyes and they became wide and then they closed and he took his last breath. Oh Lord, I will never forget that moment and  five years later, I still re-live that moment over and over.

I got off the bed and went to tell his sister and B that he had passed. They had not been in the room with Dad and me. They were in the bedroom across the hall chatting. When I told them they  both said,”really?”

They got up and went to where he was and told him they loved him. I never felt so alone as I did at that moment. It was up to me to call the funeral home. I made that dreaded call and went outside and sat in the swing and smoked. Crows filled the trees. Their chatter was so loud and when I looked up at the trees they were black in color from so many birds.

As quickly as they had come, they left. The funeral home came and I could not go inside. I stayed out until Dad was removed from the home. I was so thankful to the parlor as they helped me decide things. Who was there to call was one thing.

Dad’s sister’s husband, my uncle volunteered to tell Al and our half-sister. While the attendant and me were making decisions I don’t know what happened to B and the sister, but suddenly they appeared with Dad’s wallet and they had emptied it.

I was in too much pain to notice or think twice about what they had been up to. I didn’t even mind that Uncle was going to tell my siblings. The dust settles though and you learn of what was happening around you once your mind becomes clear.

Considering Al is disabled with mental challenges I would have made the effort to go to him in person and tell him the sad news about Dad, but instead the Uncle called Al. This had to be the coldest move ever. I can only imagine how Al felt getting a phone call stating, your Dad is dead.

Through the years of caring for Al he has told me how awful he felt. He didn’t know what to do. My heart still aches at the crappy way in which he was  dealt the news. What was worse or just as bad as that the month prior to Dad’s death Al and our half-sister were not allowed in B’s house. Neither of my siblings were given the chance to say goodbye or settle any last thoughts with  him.

I try real hard not to dwell on this topic today as the pain is instantly resurfaced and I find myself becoming depressed for a few days. That afternoon of his death I went to the funeral home and tried to make plans with the attendant. My Uncle kept trying to take over and make the decisions. Finally the owner of the home asked my Uncle to please remain quiet. It was time for the eldest child to take care of matters.

I can remember the looks on their faces as this task was taken out of their hands. They were not very happy. I did my job. I let the owner walk me through the steps. I went to my daughter’s home for a few days.

I wish today that I had handled things differently. All I can think of was my brain was fogged. I was moving out of habit but not thinking. Poor Al and the sister didn’t have me around or my support. I am so ashamed of not being there for them. I  was being led around hand over hand and questioned nothing.

The funeral came and the burial was over. I was made Executor over the estate and had plenty of work to do with this. I checked in on Al daily. I saw our half-sister much more often.

One week after we had buried Dad, I received a phone call from Al’s family doctor. He was letting me know that Al had left his job and driven himself to the doctor. Al was having a heart attack.

Up to that point my mind was on the continuing path of how life was before Dad’s death. I was going to get Al an apartment where disabled adults lived. He would continue with his job and routine that he was used to.

This caused a knife into a bubble effect. Our lives changed at that moment and never went back. We were creating a new path in life, with gravel instead of paved. Big pot holes and rather large bumps.

Chapter 15

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The more ill Dad became the more I was at the home of the girlfriend. I tried my best to be smiling and talk about nothing but it was strained. Dad was fearful that he or I would say something wrong and he would be sent home packing.

Many times I heard B…

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Chapter 15

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The more ill Dad became the more I was at the home of the girlfriend. I tried my best to be smiling and talk about nothing but it was strained. Dad was fearful that he or I would say something wrong and he would be sent home packing.

Many times I heard B threaten to send him home if he didn’t behave. I felt so sad for Dad. I always knew that he was not one of those take-charge men. Mom did everything. She paid the bills. She made the better money. She was very involved with the city of our home town.

Dad stayed in the background. He had plenty of friends himself. The guys he worked with, and there were some from his church that he hung around with, but Mom always seemed to outshine on most things.

I always believed Dad had issues with Mom making more money and I feel that this hindered him taking a front seat in their marriage. So seeing this woman bully Dad when he was dying broke my heart.

Many times I ate over at B’s house. She was an excellent cook. Her home was spotless. Her dog was cute, the property she lived on beautiful. But she lacked in humanity. Her life revolved around her and we were the tagged children, and Dad was her puppet.

The minister started dropping over at B’s house to see Dad more often. Dad made it a habit to read his Bible after breakfast each day. When the minister would stop by B made a fool out of herself my making rude comments to the Reverend. She would say, “he reads his Bible but he doesn’t follow a damn thing in it.”

I used to want to just walk over and slap her silly when she talked like that. I am sure both Dad and the minister were embarrassed, I know I was. After the visit was over she would pounce like a cat all over Dad. “How can you be such a hypocrite? Reading that damn book and then not living like it says. You ought to just put it a way somewhere and forget trying to look like something you aren’t”

I don’t care if she was right or wrong. She should have never voiced her thoughts to him. I have known our Dad much longer than she has. I remembered a time when he would not step foot inside a church door. He had changed. He needed and wanted to read his daily devotions. He counted on it. Dad did not want to die. He wanted to live. He did everything in his power to keep living. I think he clung very tightly to what he read each day.

Plus, she and I nor any of us have any right to judge another human’s thoughts. Who are we to throw stones when we have not looked in our own glass mirrors first?

I stayed with Dad pretty much through the week days. I went over in the mornings and stayed until after the supper dishes were done, then I would go home. On the weekends I had to trust that B would behave as I worked all weekend long.

Spring, summer had passed and now it was fall. Dad wanted to go to a flea market. B drove and I tagged a long in case Dad needed attention. When we arrived in the parking lot and we were ready to take off B let us know that she was going on ahead. She didn’t have time to wait for Dad who was slow and using a walker.

Dad and I went into one tent and looked around and then he could go no farther. He and I sat in the shade of a hot fall day and talked while we waited for B to have her fun. On the drive home I was very quiet. B talked and Dad listened.

That was the last time I went anywhere with Dad other than his doctor appointments. I am glad I had that time with him. While we waited on the bench our talks began to become on a more personal level. Dad and I both knew he was not going to make it.

Thanksgiving came and it was a nice fall day. Of course I was supposed to be there that day. Who else would give Dad his shots and medications? Who would help him to use the bathroom facilities?

I had a terrible time because I knew that my brother and half-sister were not with us. Thanksgiving Day to me means a day of being thankful. A day of being with family. My siblings were not allowed over. Oh how I hated her for this.

I got a hold of Al and made sure he was not going to be alone on this holiday. I discovered he had been invited by Dad’s sister to be at their home for dinner. For this I was very grateful. I explained to Al how I so wanted him to be with me, but because of B’s attitude it just wasn’t going to happen. I apologized to him over and over and I don’t think he understood or does to this day why he was left out.

The dinner table was filled and over-flowing with a turkey and all the trimmings. At this point in Dad’s life food was the last thing he wanted. He would rather be sitting in the pillow based recliner that we had designed for his body.

When you are dying from Bone Cancer, even a button on a recliner touching your skin can cause great pain. There were many times that I could no longer give Dad a hug. The cancer was eating holes in his bones making him in great pain and very delicate. But this didn’t matter, he had to be at the head of the table. He was to pretend that life was great and the food divine.

If I remember right he ate a small helping of  Turkey and a teaspoon of mashed potatoes. Dad ignoring the home-made chocolate pie told any of us that knew him well that he was very sick.

He didn’t want to stay at the table. He begged me to take him to the recliner. Although B was bitching about him leaving, I took him to his chair. On the way from point A to point B, Dad quietly asked me, “did you make sure Al is alright today?”

I said,” yes he is. He is at your sisters.”

It made me feel good that Dad inquired about Al. Things were changing inside Dad. He was beginning to take stock of what he had done in his life. What kind of father  he been to Al. I think it was eating him up about certain things that had been left undone or unsaid. He touched my hand and said, “thanks Terry for making sure he is alright.”

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