A Breath of Fresh Air
A breath of fresh air. This is what I feel like I have had these past days Al and I have had a…
A Breath of Fresh Air
A breath of fresh air. This is what I feel like I have had these past days Al and I have had a…
She is wonderful. So helpful, loving and patient. She does everything for Al. I tell you I think she is spoiling him. At any time she hears him, she is right there.
I can understand why the other girl didn’t work out. There was a better choice. A perfect fit. I am getting rested. My hands are beginning to heal. I have actually felt a little lazy because I am not running back and forth doing this and that at the same time. I even laid down and rested this afternoon.
Yes, I know I am not doing as much but I still get tired. I am getting older and I am still tired from all these years of care giving alone, so I may need to rest in the afternoons for a while. LOL
I just wanted to let you know that so far this girl is amazing. I could ask for no one better.
To Worry Is Just Crazy
Last night was something else for me. In fact yesterday I sort of fretted most of the day because I…
Last night was something else for me. In fact yesterday I sort of fretted most of the day because I had pains in my chest. My fingers were tingling all day long.
After so many hours went by I was convinced I was not having a heart attack. By afternoon early evening I finally figured it out. It is the muscles I use to get Al out of bed or transfers. After all if it would have been a heart attack I surely would not be able to write right now.
My fingers I believe are from tugging and trying to push Al over so he doesn’t get bed sores from laying in the same position too long. I use a half-sheet and grab the ends and with all my might try to get him on to his opposite side.
From worrying a little bit too much I was exhausted by the time he came home from Day Program. I actually was leery of him coming home in case I was wrong. You see I love God but I don’t seem to be able to trust him quite enough to make sure I will be alright.
I have this huge fear that while he is here, I will have a heart attack and fall to the floor or worse and he will be here all alone with no help. It is so stupid, and crazy too. God won’t let this happen. He won’t let Al suffer like that, but no, I have to do things my own way.
Am I ever going to learn? Hopefully. So when he came home I ordered pizza. I had heard about the little Greek restaurant here in town who delivered. The two remarks I heard were positive.
Sometimes I get so sick of the infamous Pizza Hut or Dominoes. Well I called them and they said they made everything at the store including the crust and sauce. I thought, hmm, fresh. I like fresh, so I gave it a try. When it came I was tired but I was having no problem eating the slice because it was awesome pizza. Al even liked it.
So after supper and Al was changed I crashed on the couch for a while Al laid all comfy in his bed watching black and white old movies. He and I had made it. I survived and wasn’t on the floor. We were both resting and our tummies were full.
I have sat down here two days in a row to write and can not. I am brain-dead I think, too much…
I have sat down here two days in a row to write and can not. I am brain-dead I think, too much drama going on.
Al is having worse tremors than before. If he isn’t asleep the tremors are at full force. He wants to come home, and I can’t make it happen any quicker. Each day I wait for that phone to ring for the appointment to be made. This is the last appointment before he comes home and the phone remains silent.
I had a phone call last evening after business hours. It was from some collection agency wanting to speak to my brother. I explained that I was his guardian and he couldn’t speak for himself.
They said they wouldn’t talk without the legal papers showing who I was. I said I would fax them, but then she told me it would go to another office and would be looked at this morning. I explained to her about the Hipaa laws and that I didn’t want just any eyes seeing private things.
She told me to fax it anyways but I refused. This morning I called this business and they had me on hold for quite some time. When they finally came to the phone they didn’t show any collections for him. They told me to call the hospital and doctor’s office.
I did this and still nothing. I know when I got off the phone last night it only took that one phone call to stress me to the max. I couldn’t do anything until this morning. I started fretting about what could be wrong. I always pay his bills, so what was up?
As I became more agitated I sat here at the computer and cried for no reason. I asked God, God can I put this in the worry basket of yours? I just can’t deal with anymore. I am tired Lord, oh so tired.
I don’t know if God took care of this or if this was a spam call, but there is no evidence of owed bills today.
I rearranged my living room and moved furniture into funny areas to make our home as open and wide as possible for Al’s wheelchair. My family is having issues that I can only be a good listener and a devoted Mom but I can’t fix anything.
I am just overwhelmed I think. The straw that broke the camel’s back was I do not usually go out after supper unless it is about Al or I am a tag-along with my son. I made special arrangements to deliver one of the pieces I sold from my antique site and the person was a no-show.
The gas was wasted and so was my mind and time. I came home and wrote an amendment that from now on they have to pick-up. If they don’t want to show or have the guts to say they changed their mind, at least it isn’t my gas and time being wasted.
Wow, I sound like a harsh mean old woman. I am not really. I just get sick of crap, as Al would say. He says I am so sick of this crap. Parkinson’s doesn’t care if it ruins me. It doesn’t care if I spill my food all over me and the floor. Darn old Parkinson‘s.
I have to agree with you Buddy, some days life sucks.
Nightmare at the Hospital
Today you will get a break from my writing. I am so tired and I feel like I can only write once…
We all have at one time witnessed or been a part of someone in great pain and maybe even dying. It is a horrendous time to go through, but we look at the end of the rainbow. We know this too shall pass. They will either get better or be pain-free in heaven.
Yesterday evening about 11pm I received a phone call from Al‘s facility. He had been suffering from chest pains. They gave him three Nitrates but it didn’t help. They were letting me know they were sending him to the ER.
I was shook up a little but sad to say I am getting used to the late night phone calls. I got dressed and went to the hospital. I beat the EMS by about five minutes.
I want to say to never get comfortable in your situation. Whether you hit the lottery, or you are barely making it, or as in Al’s case repeated trips to the ER should not be taken lightly. Life does change and when you think you got it all going on , things change.
I had never seen Al like this in my life. This pain was worse than any pain he suffers from the Parkinson’s Disease. He grabbed his chest I don’t know how many times. He cried and he kept crying out to any nurse that walked by saying, help me, help me, I am not going to make it.
He would be lying down and then all of a sudden jump up into a sitting situation. His eyes would be popping out pretty much and he would scream in pain. He was yelling my neck hurts, my chest hurts and my arms feel funny. The heart monitor went nuts. His heart was showing a heart rate at 300 many times.
They did many tests on him but the heart enzyme test came back negative. So thankfully he didn’t have a heart attack. But in some ways I wish he would have because quite a few times people can have surgery to repair a damaged heart.
No this wasn’t going to be so simple. I was explained that there are muscles lining the heart and muscles throughout the rib cage. The Parkinson’s is fully engaged in his chest wall.
The nurse kept saying to me, his blood pressure and heart can’t take much more of this.
I was sick, not physically but mentally. My stomach hurt and burned. I couldn’t even cry I was so worried about him. To stand there holding his hand and have him tell me he wasn’t going to make it this time broke me up bad.
They couldn’t do anything for him until all the tests came back. This time period was four hours. After the doctor got the clear he gave Al an IV with morphine. In less than five minutes he was out. The monitor calmed down and he was resting peacefully.
I looked at his gray nails and his pale face and I could not deny any longer this was serious. It was as if the Doctor read my mind. He came in and took me out in the hall. He said, Al can’t take much more of this. Although he is not having a heart attack, every time he has tremors in his chest cavity his heart is trying to adjust to the speed of the tremors. If you are planning on taking him home as you stated earlier, I suggest you get him home.
They kept Al another hour to make sure he was going to be alright from the IV. Along with his powerful pain patch, three nitrates and four baby aspirin and all the other medications in him, he had to be watched carefully.
I went outside and got in my car. It was so dark with a three-quarter moon, but yet so quiet and still. I felt funny inside and then I broke down. The problem with release was it didn’t come. Only a few tears fell and then I drove up to the front door and got Al in the car. I took him back to the facility.
I got home about five am this morning and slept for a few hours when the phone rang. It was the doctor’s office. They told me that they have increased the dosage of Al’s pain patch and have put him on another pain med.
Al seems to live on pain medications more and more and there is no hope or thought anymore that he may become addicted. I did say in an earlier post that I just wanted him as pain-free as possible and this is what the doctors are doing.
Please remember even one dollar adds up. Major credit cards accepted. If you use Pay Pal please make sure you mark it as a gift so you are not charged.
I am exhausted. I didn’t do any work today and this is why I am so tired. Instead at the crack of dawn I answered the phone. It was the nurse saying Al didn’t feel well. He was cold and clammy and was having chest pains.
I really received no satisfaction so I asked her to ask Al if he wanted me to come in to see him and he said yes. I hurried and got dressed and grabbed my medicine to take with me. I figured I would just take it with a glass of water at the facility and find something to nibble on somewhere.
When I got there Al did not look good. His face was pale. He told me he felt light-headed. He also said he didn’t eat supper last night because he didn’t feel good. Then he changed it to a little bit he ate but not much, so not sure on the supper deal. The nurse didn’t seem to know anything about this.
He stated his heart was beating really fast. He was cold and clammy and his BP was 172/90. Not extreme but a big enough signal for me to ask Al if he wanted to go to the ER and he said yes.
The EMS came and got him and I left first sneaking into the gas station to buy a bottle of water and a nasty pre-packaged turkey sandwich. I ignored the tough bread and ate the turkey out of it.
Off I went to the hospital. The EMS and I met each other there. I watched them carry Al inside and then I popped my body in the waiting area. They made me wait until they got him comfortable. That is a new word for me. I don’t remember Al being comfortable for at least a year or so, but nice thought.
The nurses and doctors were disagreeing about what was wrong with him. Some said his heart, others said it was the tremors mimicking a heart attack. As before when I was there, the machine was all over the place.
Two or three nurses would come in at a time and check the sounding alarm and say, “Don’t worry, it is just his tremors.” When I told the doctor that we were here two weeks ago and the heart monitor showed his heart going clear up to 250 he told me that was impossible. I said, ” I saw it with my own eyes.”
“He would be dead if his heart beat went that high.”
“I don’t know, I am not the doctor. I just know what the numbers were saying.”
They did a Cat Scan on him to make sure his fall hadn’t damaged his head in some way. Seeing the band aid over his eye and forehead from the rug burn he acquired in the bathroom on the tile floor. It is a doozy too, let me tell you. Nice and long and looks like a rug burn for sure.
Al went from clammy to soaking wet and each time he did this his chest would hurt. The staff seemed to be stumped. They said it wasn’t his heart but they gave him baby aspirin and admitted him.
Now he is staying over nite and they are documenting and monitoring his heart. They gave him some more baby aspirin. He continued to get clammy and soaked from sweat up until I left.
His heart doctor is to be there in the morning and they are going to see if his neurologist will come in also. I don’t know what is going on. The last doctor I talked to was the admitting doctor. My grandmother was just nuts about him. I remember her speaking so highly of him for many years
He told me,” It may not be his heart causing the great fluctuation but it sure is wearing his heart down. We need to see if there is some way to calm his body down of those tremors. His heart will be exhausted at this stage of the disease.”
I had argued this point with the ER doctors before when I questioned them about the wear and tear on his heart from the massive tremors. They always stated that it was not his heart. But here is a doctor that says it is making the heart work so much harder trying to cope with the tremors. Since he is a heart patient it is going to make the heart tired.
I was exhausted so when Al wanted to go to sleep I came home. I told them to call me for anything, because I love him. Call me even in the middle of the night. They told me Al was one lucky guy to have such a loving sister. I said, “He is my brother, I could react in no other way.” They smiled and I came home and napped.
I am very upset. I am trying to slow down my breathing. I am trying to stop the first tear from falling. I am so much at the end of my rope I think I have to ask for an extension.
I took Al to his appointment this morning. I didn’t realize how weak I had become.I felt like an old. old woman. I could barely pick that wheelchair up and put it in and take it out of the car, let alone three times just today. We took his wheelchair because I knew he could not make it that long walking. I had never seen Al like he was the entire day. He would be talking and then his mouth would be in motion of speaking but when I looked at him he was fast asleep. Then he would wake again. The doctor suggested a way to help Al drink better. He said he saw it on a movie and one of his PD patients now uses it. It is a helmet that has two cup holders. Straws connect from the cups and sit at an angle of his lips. All he would have to would be to turn his head a tiny bit and he could drink and he would not suck the straw down his throat. I thought I am going to hunt this helmet down somehow and get it. Hopefully it isn’t too expensive.
While we were there the doc said there was nothing else to be done for Al. Just as we were getting ready to leave we noticed half of Al’s fingernails were dark gray. The doc said to go across the street to Al’s heart doctor and let them know about the chest pains and the nail beds.
The heart doc wasn’t in. She was actually at the hospital working on a patient. The cardio nurse suggested we take Al to the ER. When we got him in his room and they took his shirt off I was aghast at the huge bruises on his chest.They were on his arms and chest. One was around his nipple area and it was the size of a peach.
Immediately the staff questioned me about the bruises. I told them that the facility had called me a little over a week ago and said he had some small bruises and that he had fallen through the night. I remember that so well because I talked my head off to Al about getting up during the night without help. He swore and cried to me that he didn’t fall. He had gotten up but didn’t fall.
I had decided then that Al just must have forgotten due to his Parkinson’s Dementia. Now the staff at the ER was concerned on the number of bruises and the size. I had not seen Al with his shirt off since the fall so like I said I was shocked.
With Al’s congested heart failure and angina they ran special tests. They came back alright but the x-ray they took showed something brand new to me. While they were letting the doctor read the tests I would watch the heart monitor go nuts. His heart rate would go from 65 to 220 to 50 to 260 back to 50. It was all over the place. The heart monitor kept sounding like a tornado drill. I can tell you I was scared to death for Al.
In the end the news I learned was something I was not familiar with. Al’s PD has not only entered the muscles of the arms and legs that I can see; it has entered the chest cavity. It has attacked the lining of the chest walls and the rib cage and is now tremoring. So now this PD has entered his heart, his chest cavity and his eyes internally. This is what is causing all of Al’s chest and rib pains.
They said there was nothing they could really do as it was part of the PD. They said he had a bad case of PD. I have heard that said before. I knew that Al had said when I picked him up this morning that both of his ribs were hurting. I thought maybe he had fallen before but evidently not. It is the tremors. Imagine coughing over and over and not stopping, the nurse said. This is what the tremors are doing inside his chest cavity. But the heart monitor is picking up ever tremor. This is why the heart rate is going whacky. You just can’t see it with the naked eye.
Long term, this could hurt Al’s heart as it isn’t in great condition. The doctor suggested Al take it easy on the walking again. This causes tremors to act up more than usual.
I took Al back to the facility and got him laying on his bed. He was very tired. The nurse came in to grab the charts from me and I told her I wanted to speak to her. I don’t know what she took that to mean but when I walked back out in to the hall that nurse was telling a CNA that Al’s sister was demanding to talk to her and from now on she was not going into Al’s room alone. I waited for the Head of Nurses to come and we three went into a private room.
The first thing I said was ,” I don’t appreciate you telling a CNA my brother’s business right in the middle of the hall. It is not her concern and if I can hear everything you are saying I am sure others can hear also. She told me she was not going into his room alone anymore, and I asked, “Why is he sexual towards you?” She laughed and said no and I said ” then are you afraid of him? she said, he gets confused about things. OK, I thought.
I told the two of them what I had learned at the doc’s office and ER. I told them that we need to back off the walker again and try using it at one meal time and if he doesn’t hurt from that try adding another meal.
Al always tells me that it hurts to walk and I do understand this but he says some staff tell him he needs to walk. It is good for him. I told the two nurses,” I don’t know what else to do to get it made so plain and clear. You are not to push him to walk. You all push him and tell him he can do it and now he is paying the price of worsened tremors causing chest pains that feel like heart attacks. I want it stopped now!”
They both looked at me and then the charge nurse spoke. ” Do you want us to take his walker away?” I almost lost it then. What does it take to get it across it is according to Al’s pain, a good day or bad day, that determines his walking or using a wheelchair. They don’t get it. They want him to walk everywhere he goes now that the pain patch is working. I want him to walk but not over do it. Shoot maybe I can’t even get my point across to anyone. Do any of you understand what I am saying?
It isn’t routine, it is PD for heaven sakes. There is no schedule. It all surrounds on whether he is in pain or not. I just don’t know what else to do anymore. It is like no one gets it. How much easier would this be if he was just an elderly person waiting to die sitting in a nursing home……………….