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.
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