Some days it is almost too much to go through the days. Praying and hoping Al is having a good day. Knowing and expecting a very tired man when he returns home. I have all the support from all of you. But yet in this past half hour my heart aches and I…
Some days it is almost too much to go through the days. Praying and hoping Al is having a good day. Knowing and expecting a very tired man when he returns home. I have all the support from all of you. But yet in this past half hour my heart aches and I needed someone close that knew what I am feeling right now.
I ran across a daughter whose mother passed a way from M.S.A. This is the same illness that Al has. She had a video and I was stupid or maybe smart enough to watch it. I lost it as I saw either the exact same thing Al goes through, or the beginning stages of what this Mother went through. The illness between this lady and Al are almost identical.
Please watch and all you have to do is change her face to Al’s. There are only a couple of differences, the eyes closed and the skin and bones.
Daily Prompt; Drawing a Blank
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When was the last time your walked away from a…
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When was the last time your walked away from a discussion, only to think of The Perfect Comeback hours later? Recreate the scene for us, and use your winning line.
Photographers, artists, poets: show us HEATED.
There is only one person that I butt heads with most of the time. It is because we are too much alike. We are both sensitive and instantly we can put each other on the defense, which makes ugly words come forth, and regrets come later.
I have learned to bite my tongue and walk a way. Now I get so shaky inside. My legs feel like jelly and my hands began to tremor. It is built up hurt and anger not knowing how to be released.
The next time we see each other, the topic comes up and we talk about it calmly until we each get our point across.
It just isn’t worth letting words fly, tempers flare, and blood pressure soars. We are adults and even in the middle of battle, we need to remember we are grown-up and we can handle issues in a better way.
My winning line being said my me because I always end up feeling better saying the last words is, now don’t we both feel better now?
Where Are You?
My brother is worse now than earlier today. He is hateful and mean. He told the aide that there was…
My brother is worse now than earlier today. He is hateful and mean. He told the aide that there was urine all over the floor. She and I checked but saw nothing. He was angry at his wheelchair. He was angry at everything, even life.
In the two hours I was there over supper I heard him talking about guns and death. He said he wished he was dead. I let everything I ever learn slip out of my right mind, as I sat in terror wondering where Al was in his mind.
I had even stopped at his old place at work, and chatted with his old boss. He gave me a hat and shirt to take to Al. I just knew that would make a world of difference. He gave me the tiniest of smiles but that was it. He didn’t want to try the hat on or even hold it.
His head was about an inch from his plate. He seemed so weak, or tired or, oh crap, I don’t even know what the word is, different.
I am afraid for my brother, I can’t lie and try to make you believe that I just know everything is going to be alright, because I don’t.
I wonder where Al is in his mind. I saw glimpses but then he would disappear. I was a rattlesnake. My mouth hissed words out so fast. I know I was a rambling idiot, but evidently my fear was bigger than life at this time.
I came home and took a shower. I looked at all the crap back in my living room. The sale was a flop. I had like five people stop. Never again, or not for a long time will I have a sale. I donated Al’s too big clothing and a lot of my clothes to a shelter for men/
women about half an hour a way.
Someone can get use out of these. Right now I wish I could donate everything that reminds me of Mom, Dad, Al, myself and Parkinson’s. I am not depressed, I am scared, and partially numb.
I am waiting on a call from the nursing home, as they have given Al more than ample hours to act more like himself, but he didn’t make the mark.
Oh, Al, where are you baby brother…………
I haven’t talked about my brother in a few days because I had to sort things out. Now days
later, I wish I could have gotten it all straightened out in my head. I had went to see Al and as soon as he saw me he started telling me what happened.
The first thing I want to make clear before I get going is, whenever Al has important issues to him he saves them for me.
When something at the facility happens, the nurses never let me know.
And lastly, I understand it is a brother sister thing. Al will save his priorities for my ears first.
So on with the story. He starts in telling me that some staff member, named Melanie who works in therapy saw him sitting out in the hall on his walker. He has one of those walkers that has the built-in seat.. He told me that she said, ” You are not supposed to be sitting to go anywhere, you are to be walking”. Then in a blink of an eye he starts crying very hard, and he is going on and on how no one understands how much pain he is in. He said,” I told that lady that she could have my knees and legs any day. That she had no right to talk to me about walking. Can’t she tell that I would walk if I could”?
I had no idea what was going on, but I was piecing together a misunderstanding. On my brother’s behalf I went to a nurse and then she took me down to another nurse’s station, and we sat together while I repeated Al’s story. I asked them to please explain what had happened so I could go back and calm him down.
They rambled on a story sort of similar to Al’s. They explained that the therapist was just kidding with Al and that the nurses had told the therapist to go apologize to Al. I was feeling a little uncomfortable from all of this. It seemed a bit over dramatized on Al’s side. He had his feelings hurt, she had made a funny remark, but he took it wrong. I said my thanks and went back to explain to Al what they had said.
As I start to enter his room I can hear him cussing up a storm and I can hear his sobbing. I went in and took a hold of his hands and tried to calm him by explaining what had happened and that he just didn’t remember the apology from a short time ago.
He let loose on me, calling all the nurses liars, and saying that no one came and apologized to him! Other nurses heard the commotion as they walked by and soon three nurses and a couple of aides were present for the show.
An aide spoke up and said that he had been complaining ever since 9:30 that morning. It was now noon. The more the nurses tried to explain themselves the more Al got upset, until he decided he was not partaking in lunch.
I was speechless. My emotions were high. Tears fell from me for Al and the drama that was going on. All I could think of was, why didn’t someone call me when this happened. I finally voiced it and it got silent. Nurses and aides looked at each other for what seemed minutes, and then one stated that he has been mad all morning even going as far as being mean mouthed to a nurse. I said, in monotone, ” you should have called me”.
I was at a loss. I didn’t know which way to turn. Then I got an idea. Let’s take Al to the therapy room and have him point this gal out. We get him out of the chair, take him there, and he can’t pinpoint her. Case over and closed. I haven’t spoken of it since. I know something happened, but what, I am not sure.
Today, I went in to see him. I walk in to see Al butt naked. He is bent half down from his knees. He is trying to bend over and get a pair of clean pants. I help him get them and we take off for the bathroom.
I noticed that the bathroom emergency light was on. He had pulled the help string, but no one had gotten to him as yet. At the same time I am taking him to clean him up, his boss from his old job walks in and Al loses it all over again. The tears are soaking his clothes. The boss is looking at me. Al was totally embarrassed that someone he thought so much of now knew he was wetting himself.
The boss stepped out while I took Al’s soaked brief off. He smelled so darn bad. I put a clean brief on him and clean pants and washed him up a bit. I left his dirties on the bathroom floor since there was company and took Al back out.
His boss had brought him one of those giant size Christmas cards with over 200 signatures. He would not open it. They had purchased him a sheep lined soft blanket, that I was so jealous of. He never took it out of the bag.
It isn’t that he was mad, he was embarrassed. He was in pain and he is miserable from the disease. The sight of his boss brought back memories for Al of things he used to do. Al is so emotional anymore, I am not sure if I can even hate Parkinson’s Disease anymore than I already do.
Scott, his boss tried to carry on a conversation but it just wasn’t working. I had a meal for Al that I had picked up on the way, getting cold on the bed, so I suggested it was lunch time. Why didn’t we take the lunch and his boss and me down to eat. Scott could sit with him.
Al thought that was a good idea but couldn’t get out of his recliner. His legs were frozen. We got him up and then walked him out in to a hall, where now always sits a wheel chair for Al’s weakness. Sometimes he can walk and others not hardly at all.
I sat him in one of the two chairs and a lady comes out from across the hall and starts accusing us of stealing her chair. Oh brother, look at the mess I have created now, I was thinking. I got Al over in to the other chair and of course he is letting the lady know that he would not steal her chair.
Finally we make it down to the dining room and then in another blink of an eye, Al is back to a more content Al. He is telling everyone and repeating himself over and over that his sister and boss are here. He explains which one of us is the sister and which one is the boss.
Later on the boss leaves and I think it really disturbed Scott to watch Al make such a mess eating. He has not seen Al like this before. Al had food all over his mouth, fingers and clothes. It took him an hour to eat. I saw nothing to clean him up with so I walked over to a sink and took some paper towels and wetting them, cleaned him up.
When I wheeled him back to the room, I opened his big card for him because he could not. He could not see any of the writing so I read to him all 200 signatures and well wishes. He seemed calm but I could see his eyes drooping. I asked him if he was getting sleepy and he said yes, but I can’t take my nap until I read my bible. I said why, and he told me,” because if I die during my nap, I want God to know I am here waiting for him”.
My heart dropped and my tears fell. I leaned over and gave him a kiss on the forehead and told him how much I loved him. As I was leaving his room a nurse pulled me aside and said,” Al’s Parkinson’s is getting worse. We are going to be using the wheel chair more. The doctor is upping the strength on his pain medications. I hope you realize what is happening”.
As she turned and left I stood in the hall, not being able to move. I leaned my head back against the cold brick wall, and wept. I was thinking to myself, of course I know what is happening. He is getting worse. He can barely stand. He is using a wheel chair more and more. Doctor is giving him stronger medications to bring him more comfort. He is struggling to feed himself. Yes, I see it all. I am watching my brother continue to deteriorate. Please, dear God, help me to have the strength to be a support system to my brother. Bring him peace Lord and help him in any way you can.
Finally my legs began to move and I lifted my head and my body found its way out the side door. Tears fell all the way home, as I knew I was slowly saying another good-bye.
This one is sort of hard for me, because first I had to look back at the last time I had the
fight or flight mood happen. As I was going back in memory lane, it came to me. It was about a year and a half ago.
I hesitated to write about this, because it was a sensitive topic, and the person involved still can trigger emotions in me yet today.
The topic is something that I rarely speak about out loud, as if it will curse me. You know what I mean. You start saying something negative about your car, and boom, it happens, what you talked about running so good, or having no problems, all of a sudden, it happens!
I have a wonderful brother, who by now you all know, but Al and I also have a step-sister. A woman ten years younger than myself. I can remember a time when we were pretty close. It was the baby sister looking up to the big sister, wanting to be just like her, but things changed. Life changed, our father passed away. All three of us kids had the same father.
When dad passed a way, it was the worst time in my life, the worst tragedy that I have ever lived. It was worse than my divorce, or being more poor than I am now. There was a will, and that is when all hell broke loose.
Our father knew us well, he knew each of us and how we handled monies, and therefore, he made arrangements for each to have certain things at different times in our lives.
Dad was smart, I must say, he knew Al would always need extra help. Help with living arrangements, medical, and survival. Dad never knew that I took care of Al of course, but I guess that is hindsight, the real point here is that dad made sure Al would be alright if anything happened to him, dad.
Our sister wanted more than what she received, and so as a lot of people do, they attack the weakest, which in this case was Al, with his mentality. One day I went to the mail box, and there was that certain white, big envelope. The kind that sort of makes your stomach rumble as it doesn’t look like an ad or a bill.
I took it inside and opened it and learned that our sister was taking me to court to switch Al from my care to hers. I instantly got hot inside. I was too scared to cry, and I did not go immediately to God with my problem.
I sweated for the better part of these two weeks before the court date. Al and I cried a lot, for fear of being separated from each other. I think I bit my nails down to the quick, and I lost some weight also.
One day a few days before the court date, a friend reminded me to go to the Lord with this. He was the miracle worker, he was the one that saw things for what they truly were, and he knew what was right from wrong.
I got on my knees and prayed. I can still remember it so well. Al got on his knees also, and we held hands, he cried and I prayed, and when we were finished, I felt so much calmer. I had come to a realm of new realization. I had nothing to fear. I knew that I was doing the best I could with Al’s care.
The day came, and my stomach started to churn. I sat in the front of the court room on my designated seat. Before, the judge walked in, I silently prayed again, for God to use my mouth to form the correct words. Please Lord, do not let me make a fool of myself from my nerves. Help me to look calm and confident.
The judge entered and the questions started coming at me. One, two, three, four, five, and finally it was over. I made my last statement, and my voice never quivered. As soon as I was finished, the judge looked back at my brother, who was sitting in the background, and he asked him to stand up. Al stood up and the judge asked him if he had anything he wanted to say.
My brother started crying very hard, and somewhere in between the cries and the silence of the room, the judge and I, and all others involved heard my brother say,
Please don’t take me a way from my sister. I love living with her. I love her. We go places and she takes me out to eat and takes me to the Goodwill stores to buy coca-cola. I don’t want to live with the other sister.
I think when I looked or stared into the judges eyes as Al spoke, I could swear a saw one shiny tear fall from his eye. The judge coughed and cleared his throat, and looked back at me and said,
This case is a waste of my valuable time. There is nothing here to judge, as I can see Al is very well taken care of and is happy where he is living. Case is dismissed.
I said, I don’t know how many thank-you’s to the judge, as he leaned from his pulpit and reached down and shook my hand. He said for me to continue the good job. I walked quickly over to Al, and he was still crying. With his mentality problems, he didn’t comprehend what was happening, so I just said,
Hey bud, you ready to go get something to eat and go home?
He looked at me and asked,
You mean home with you? and I said yes!
I got the biggest smile I have ever seen in my life taking care of him. He got it! He understood, we had won, and she had lost. He grabbed his hat and waved at the people in the courtroom, telling them goodbye, and we took off to go celebrate.
What a wonderful God we have walking beside us. Some of you can sit and say, I may have won without asking for God’s help, but really, why would I want to take such a big risk of losing and counting on my own nervous self? No way, I wanted God on my side as judge and jury.
I went to see Al this morning, and he was not having a good day. I stayed about an hour and a half, while he went through some deep heat therapy. His legs were in great pain and he was in freezing modes today.
The therapists and I could not get much out of him today, as the pain was bigger than the day. He even asked me to go get the nurse for some pain medications. The therapy has stopped for Al, as far as the physical therapy. The professionals say there is no more that can be done for his legs any longer, but when they see Al struggling to walk or his legs buckling, they haul him into the therapy room and use the deep heat to try to loosen up the nasty Parkinson’s.
I left him when I walked him down to the lunch room, and I saw three two-handled cups sitting there for him a long with weighted silverware. I am so happy they are having him use these, as the last time I took him out to eat, he could barely lift the glass to his mouth, and struggled to use a straw.
I am just amazed at how Parkinson’s can move along so quickly, almost like week to week you see changes.
I have had so much good advice from all of you on here about me. I have just been so far down in the dumps, I can barely climb out. Everything makes me cry, the dog is causing me more grief than pleasure. I just don’t think it was probably good timing getting such a young pup at this time.
I decided that I had to do something. I am afraid to remain like this in this stage, for fear I will slip into some depression and I want to fight it if I can, so this morning, for the first time in months, I put make-up on. I looked in the mirror and asked, is this really you?
After leaving Al in the pain that he was, my heart felt so much lower than ever, I got in my car and the car or God took over, or something grabbed a hold of me, and said press on young lady, you have a life to live, now get out there! I am sure it was my own self scolding me, but anyways, my car went to the beauty shop, parked, and went in, and when I came out, I looked like this!
It has helped some, I am back to my down feeling, but some good happened today also, so I am hopeful.
Who I am 