Bad To Worse

English: 'A pain stabbed my heart as it did ev...

I received a call today on my drive to my water class. When I entered the front doors, I broke down crying. People stared but I didn’t care. Let them stare, they did not know me. I went to my class and my teacher looked at me and I smiled, but she sensed, I guess, that something is wrong. I told her a tiny piece and she said all will be alright.

For a split second I wanted to scream at her saying no it isn’t. Quit telling me it is going to be alright. It is never going to get better. I lied and kept smiling and told her I was sure it would be.

I did my hour of class. I tried real hard to pretend to enjoy it but all the while I kept thinking back to the recent phone call.

The call went something like this, Hello Terry? Yes this is she. I just wanted to let you know that Al is still reacting to everything. He is on a big pity party. He wants all of our attention and we are too big of a company to do this for him. He takes everything we say personally instead of the way we are intending it to be. I am afraid we can not tolerate the tears and anger that he shows. He has sworn at staff. We are going to have to find some other resources for him. I said, I am driving and after class I will be in. Thank-you for calling.

I went in after class and saw him heading back to his room from lunch. I talked to the nurse for a moment as I waited for him to make his way closer. She told me that she will not tolerate his pain being used for excuses of bad behavior. She explained that she has an autistic child at home who is 10 and she does the tough love thing, and she will do this for Al also. I just looked at her and continued to wait on Al.

When we got to his room I did discuss with him about behaviors and what was told to me. He started crying. I told him I certainly understand his pain but he can not be rude to others because of the pain. He asked what he did or had said and I told him what was explained to me. He didn’t remember any of it and he cried harder.

He told me that when he gets to the dining room he can not get himself under the dining table and he asked for help like I said to do, but they told him he could do it himself. I was so exhausted. I hate to bring me into the story. But the he said and they said just drive me crazy.

I told him to hang on. I said I was going to go get the social worker and bring her down so the three of us could sort through this. I left and went to her office. She welcomed me in. This is what I heard from this end.

Al made a comment to another resident that he was stupid and didn’t know how to get out-of-the-way. Fortunately for Al the resident was hard of hearing or we would have to report this to state. He is causing scenes by crying and being overly sensitive. We can not have this here. We are going to have to find another place for him to go.

She gets on the phone and makes a call, then the phone is handed to me.

We are going to meet with you Terry at your home one day next week. We have a couple of choices. He can go to a group home and I am placing him on the waiting list as we speak, or he can be placed on a Medicaid Waiver and he will be returned back to his home. It is possible that the waiver will make changes to your home so that wheel chairs can fit everywhere. It is possible that he will have help through the waiver for caregiver help.

The social service director said that it was two weeks until Al starts the special funding program of going out, but he may not make it until that time gets here.  She told me to take a vacation and they would watch over him better than normal while I was gone. She stated that he could live for years to come and it would be a long time before I got another break.

She handed me a brand new book free of charge that talks about Parkinson’s/Dementia. She told me to go home and read it. She ended the conversation by saying,

I have to run some errands. I need to go to the bank and cash my check. I will let you know when I get a phone call.

I feel like placing him there was a mistake. They pushed therapy on his legs without my approval. He is now in more pain than when he was home. They made me feel like it was abnormal for Al to want one on one attention and if he wanted that, he needed to go else where.

I realize the Parkinson’s progresses but I have to admit I have never seen him as emotionally upset and crying and angry as I see him now. I can’t blame the facility. In fact I can’t pin point anyone because I don’t know why this is happening. All I know is everything is a mess. They have taken all of his money. He may come home or he may be placed with moderately to severe mental handicapped people.

I am not crying now. I already did that. I am more numb than anything. I turn my thoughts around in circles seeing nothing anywhere. I am tired, I am worn down, and I realize I am not alone, I have all of you. But, as I sit here, I sure feel alone.

The Fear Word

There Goes the Fear

There Goes the Fear (Photo credit: Wikipedia)

Fear. It can take over your body, mind and soul, in a second. Sometimes it isn’t something that comes out and spooks you. It can just be a word. A memory. A frightening memory, that you had buried somewhere deep in your head, to never step forth again. I heard that word today. Normally, this isn’t a bad word. Often, people feel comfortable with the word. Follow me through this story, going back to the times you have often taken this path also. Help me to understand and respect this word, so that I can once again, lay it to rest. You have to visit a doctor. It doesn’t matter what type of doctor. The first thing they do is take your ID and insurance cards. Check! Next you fill out your medical history. You place down on the unfamiliar papers, letting them know all of your history. Now, this includes any surgeries, allergies, your parents information, also going a bit farther, your mental health. Have you ever thought of committing suicide. Have you ever tried harming yourself.Check! Now sign the most important document, your HIPPA  paper. This paper is to protect your very important information. No one is to see it. Check! All finished, you go back over your work, making sure your phone number, address, social security is all correct. Check! You hand the smiling receptionist your finished papers, and sit down to hear your name called. While you are waiting, your information is being typed into a data base in the office’s computer. Your name is called, your paper work is finished, it is typed in, and you officially now have a file on yourself.Remember, HIPPA. Your rights to privacy. Never should we forget. Did they forget to tell you , that there are special rules that can pertain to this? I didn’t think so. This is how I became afraid of THE WORD. Now, switch gears with me. We all know that I have been letting you in on my brother’s health. He has a few too many problems, including mental  health. At one visit some time back, I filled out one of those many clipboards. We waited our turn, got called in. The doctor seemed nice. He checked my brother over thoroughly. He talked more to him, the mentally challenged one, than he did to me, the guardian and sister. The doctor asked certain questions, and with my brother’s not so good of understanding, answered the best he could, sometimes adding how he got mad at this person or that. The doctor made notations from what he had heard and noted the bruises on my brother, which is from his heart medications. Nice doctor, not bad visit. A stop at McDonalds on the way home for ice-cream. Cool!! The day had gone well. A few days later in the week, we got an unexpected visitor. From the information provided in our paper work, the bruises, the comments from a mentally challenged patient, the WORD, was at our door. Social Services. Here to check on his living arrangements. Just doing a routine check, they said. Check!! I ended having to go from the nice person who opened the door, to being on total defense, proving myself innocent. After much sweat, and shaky legs, and nerves shot, she said she found everything was alright. That he was really lucky to have such a caring sister. She could tell that I loved him and cared about him a lot. She left, and I sat down and smoked a couple of cigarettes in a row, wishing at that moment, I drank the brew. Now go with me today. We had an appointment for my brother from a different type of doctor. A psych doctor. The regular doctor wanted a second opinion to see if maybe a medication change may be needed. I could deal with this, right? Anything to help my brother get through this Parkinson’s. He agreed, there was not much more that could be done, and said to come back in a couple of months, just to touch base, and see if there was anything we may need his help for. Nice doctor. We leave, or we try to leave. A young lady, looking to be a teenager, who I found out did work for the office, wanted to talk privately. My brother started crying, because as we were leaving, I told him we would stop for ice-cream, as he had done so well with this new doctor. The lady says she will take us into a quiet office. She wants to have me sign some updating papers. I asked, what kind? I explained that they had already contacted me, and all information, address, phone, etc. was all updated. She said that this was a normal procedure. She takes some forms from her brief case and lays them on the table in front of me, and I read the top line. Social Services. I asked what this was about. She stated it was routine, that this information stayed within the office. Of course, I knew better. I knew that all of your information stays within the office, inside the data base, and isn’t given to anyone, UNLESS certain words are kicked out, such as anger, bruises, emotional, etc. I smiled, and froze at the same time. The FEAR word had made its way from the back burner right to the front burner in less than a blink of they eye. I said smiling to her, I am not signing anything that you have here. All paper work was signed when we first came in for the visit. I helped my brother up from his chair and took a hold of him with  one hand, his cane in the other hand, and we left the building