Roller Coaster Ride

Wow, what a ride this has been. It hasn’t been fun like a roller coaster at Disney World, but it has definitely been a ride. Sometimes it has scared me but thankfully sleep has happened so much the fear didn’t have time to escalate.

That is one of the eerie things about being sick and living alone. What if I don’t get better? What if I need to go to the ER? What if I cough myself to death? LOL

I wrote to you earlier and told you I thought I was getting better because I had a short spell of no coughing. I was wrong. I finished the antibiotic the doctor had given me, but I was really no better. When I breathed it sounded like violin strings were playing in my lungs, but the sounds were not pretty.

I was placed on a new antibiotic and for the very first time in eight days I can breathe without hearing the strings. There is still the coughing going on but I think it is not quite as strong. I am drinking a cup of coffee, which is the first time in these past eight days. It taste pretty darn good.

I still feel pretty weak. My legs wobble when I walk but I did take a shower and managed to stay standing long enough to shave the jungle that had started growing under my arm pits. LOL

I have lost nine pounds as of this morning. I know that I have not eaten as much but I think I have worked so many muscles in the trunk area that this is where I have lost so much weight. Exercise, we must get our exercise. Did you know that I have muscles that I didn’t even know worked? LOL Abdomen muscles, wow, maybe I will become a female body builder. maxineHehe

Well anyways, I think I am beginning to recover. I still have not seen my brother but have called his facility and have asked about him. The nurses always tell me the same old thing, stay a way! We don’t want it! I bet it is my raspy voice that is scaring them off. I really hope with the weather being up towards the forties this weekend, I will be able to feel good enough to take Al his soda and snacks. Although I don’t feel well enough yet to see him, I don’t want him to go without the things that he depends on so much. So please say a prayer that I am able to drive and go see him this weekend. Hugs to all of you. I have missed you!

Emotional Drama and Pain

I haven’t talked about my brother in a few days because I had to sort things out. Now days

English: Modern wheelchair

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.

I Normally Don’t Cuss

Today has been a hell of a day. There, I cussed, I said it out loud. The day started with me waking up in a good mood, but before an hour had passed, hell came in and sunshine left.

First our kitten, Cali, who is seven months old needs to be taught some manners. She has definitely come to feel comfortable here in our home. I had noticed that when looking for something last evening, I had gone into dust bunny heaven under my bed, and saw that the dark gray lining that hides the boards of a box springs, had a nice big hole shredded in it, and I don’t think the dust bunnies did it! Today, when I got up,my one framed picture hanging above the couch was all crooked. I think someone named Cali had been on the back of the couch, trying to investigate exactly what that was.

If I let her in my room at nights to sleep, she constantly bounces off and on the bed, wanting to play, causing the master of her to become very cranky, from lack of beauty sleep. So I close my door now for my sake and her sake of living. On the other hand, I can hear her out in the living room racing through the house, playing, and as I try so hard to ignore her and drift in to la-la land, I wonder what she is doing. The picture told me one of the things she did. I have used water bottles with sprayers, and it works as long as the water is being sprayed.

I steam cleaned my floors this morning, and she was biting the cord, and chasing the mop, while I was yelling at her and hoping she would not get burnt. I took a break from cleaning and was sitting here at the computer, and all of a sudden felt four claws go straight into my skin. OUCH. Oh man, that hurt. She raced across the back of the couch, I don’t know how many times. I sprayed her, she got down, and then she went to it again.

With Al, yesterday he fell early in the morning, and fell into his closet door bumping  his head. He is alright, but ever since then walking for him has become bad. It isn’t from the fall that he is walking bad, it is from the stiffness and freezing. All day today he has walked with great stiffness, moving very slowly, cussing with each step. I have seen  tears and tears and he has put himself down all through lunch today. So today, I either saw tears, or heard downgrading of one’s self, or seen Cali in motion.

After lunch, I finally got the house cleaned, and I went to bed to watch television and just relax. I ended up taking a nap the same time Al did, and woke up a couple of hours later. I had forgotten to set something out for supper, I realized too late, so I got on the phone with my yawny voice, and ordered a pizza from Papa Johns.

Already Al is up, he is barely, and I mean barely walking. Tears are flooding and he wants to go to the ER to get help with his pain. I told him that if his chest hurt, or his head, or

Living Room Couch

stomach, I would take him, but for his stiffness in walking and the freezing mode from Parkinson’s, that going to the ER would be a bad idea, as they were giving him the medications he needed now. I explained how the rotten Parkinson’s was bigger than medicines.

So now the kitten is playing with the broom bristles, that I would like to chase her with, Al is crying from pain, and the door bell rang with the pizza.

Free Write Friday, July 13th, 2012

Friday the 13th, don’t step on a crack, you might break your mother’s back. Don’t go under a ladder. Don’t cross the path of a black cat. Don’t make any big decisions on this day.

How many things have you heard about this superstitious holiday? Do you believe them, or do you laugh? Were you more fearful as a child than you are today?

Do these small words influence your thinking? I know they do for me, and it is not even a willing thought, it is habit of creature. Some things we learn as a child stay with us all through our lives. Without intending to, we can even let these superstitions rule our lives.

For me, this year on this superstitious holiday, I have had good news. I had fought with three of Al’s doctors, demanding through tone of voice, and numerous phone calls, to please consider giving him a new medication, that will actually help him in dealing with his every day pains. I don’t know if they got sick of me calling, or they knew they were backed up against the wall, with nowhere to run, but one finally gave in.

We hopped in the car, and drove to the pharmacy to pick it up. The pharmacist said Al could take the pill, but he needed to eat something with it. Al looked at the lunch counter, and I took his non-verbal cue, and we went back and had lunch. Al getting his routine food, a breaded cheeseburger, cheese sticks, and a diet cherry coke. He even ordered himself a slice of sugar cream pie for dessert. I had a whole wheat toasted egg salad sandwich, and some apple salad, and a small diet coke. After he ate, I gave him the hopefully, pain cure.

He didn’t hesitate at all, and only ask me what it was he was taking, and I explained it was to help his pain, and that is all it took, and he took it with no argument. It has been about forty-five minutes, and so for now, I am just keeping an eye on him, as it is a pain-killer in a different class of medications he usually takes. I always keep an eye on him for a few hours when he starts a new medication, pain or not. You just never know the side effects until you try them.

So today, I didn’t take notice of any cracks, or black cats, or ladders. I just took notice, that I was praying without thinking, giving thanks to our Lord for this new opportunity to help ease All’s pain. I didn’t notice that the sun was beating down hard, that there has been no rain for weeks here, and that the temperatures were still rising by afternoon, now being 93 degrees.

The car was quiet on our ride home. I was smiling and thanking God, and I know in my heart, Al was wishing and maybe even praying that he was going to be more comfortable in a while.

Friday the 13th? Superstitious? Maybe to some, but for me, I choose not to play the game for today.

I want to give credit to Kellie, who has given me one more chance to write for her exercise, Free Write Friday. Thank you Kellie!

Three Strikes, Almost Out!

This morning started off bad again. Please do not say I have no patience, I do, and besides, many of you say I have a lot of patience, but this full-circle talk is starting to test my patience.

Al was quiet this morning when he got up, which is a bad sign to me in the first place. No wave of the hand and no smile. I think maybe his tremors have kept him up too late again, as I snuck in and checked on him at three am and he was still up. He is taking prescription sleeping aids to help him sleep past the tremors, but obviously, they do not work.

After his breakfast was over he came over and sat on the couch near me. He began by showing me a new bruise he had on his leg. Actually, I could not see it, even when he pointed to it. I had to get up, turn the over head lights on and then I saw a new bruise the size of a pea.

This went from the bruise to two hours of crying and the negativity of his life. I heard that I want him out of the house. I want to live here alone. I don’t care about why he has Parkinson’s. I won’t make the doctors fix it. He can’t do anything anymore. He can’t make his bed. He can barely walk. This list was so long, I don’t have enough fingers to count the remarks he made.

I once again, and I don’t know how many conversations we have shared, told him all the good things that he should be thankful for. He can walk, he says not good. He can feed himself, he says too slow. He can still use the bathroom, he says he struggles. No matter what positive thing I said, he found a way to throw it back at me. I couldn’t take it anymore, and went to my bedroom, and this one time I slammed the door. Yes, it is still on its hinges! It gave me a release. It freed me of my wanting to go out and slash my worst enemies tires! It saved me from digging in the winter garments for my old set of ear-muffs. It felt so good. As I slammed my door, I heard him exclaim, see, you don’t care about me, you left me sitting here alone. I ignored it and laid my head down on my pillow. I knew that it would welcome my company and wrap itself around me.

It became lunch time, and I had to pick-up medications again at the pharmacy. Since this is Al’s favorite place to eat, I planned on eating here also. Here is a photo shot I took today while we were eating. I mention this place so much, I thought maybe you wanted to see what it was like.

As we were walking back to the lunch counter, Al was pretty buckled at the knee. I reminded him to stand as tall as he can so he won’t fall, and this brought more tears, and a loud what did I do now? I didn’t do anything? I asked him to lower his voice, and we did make it back to our seats.

I told my son about it earlier this evening, and he said as long as Al can do it, let him be. I got on the defense immediately, explaining I didn’t want for Al to fall and I felt I needed to remind him. Son says, I am taking away his manhood, that Al feels like I am bossing him. I have thought this over tonight, and can’t decide if I am right, or son is. I hate to see Al fall, and if I don’t say anything and he does fall, will I feel guilty? Should I just let him live his illness in peace, and stay out of the voicing concern areas? I don’t know yet. What do you think? I understand my son’s view, and I get mine also.

So, my son and family came down to grill out. Everything went well. Al didn’t want to eat outside. He prefers the table, because his nose is an inch from his plate now, which makes it easier for him not to spill food, so I let him eat alone, but turned the TV on for his company. They stayed for a short time afterwards, and then decided to head for home. As they were gathering left overs and children, Al was already struggling to get up off of the couch, and before they were all out of the door, he was gone, back to his room.

Do you have any idea how this makes me feel when he does this? I have had to deal with this now for almost five years. I know what all the doctors have said. He has transferred his feelings for dad straight to me, so he doesn’t see me as a friend, more of a boss, even though I try hard to guide gently, and not sound bossy. The way he makes me feel though, is that I am not worthy, period. Only others are worthy of his time. I have been working on getting rid of this attitude of him not wanting to be around me, and actually, I am not too much better at it than I was five years ago. I still have room for growth so maybe one day I will finally accept this for what it is.

So this was our day. Looking forward to meeting my pillow once again, and starting everything all over again tomorrow.