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……………….
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