First I want to apologize. I know I have not done a good job on commenting to your remarks. I want to, but I have been so busy I just plain haven’t had time. I hope you don’t think me rude, or worse yet, leave my blog. I promise I am doing the best I can.
You know the other day when I posted the big bout of laughter I had? It is a good thing because come Tuesday and worse yet today, I have placed the laughter on the back burner again.
I want to laugh, I swear I do, but how can I? How can I pretend that life for some isn’t grand? Others so close to me are truly suffering. Even if I wanted to, I can’t do it right now.
I got a call this morning about 9am. Guess who? The nursing home, yes you are right. Al had fallen. These seem to be old words to me anymore. Just dip your hands into the water bucket and pull out the letters FALLS.
This time he fell in the bathroom. He was impatient. He had gotten his wheelchair stuck in a position that he needed help. The nurse was in the room but she was giving Al’s roommate his insulin. She couldn’t just drop everything and go help him. She says she told him to hang on a second, but he thought he could do it himself.
He tried to stand and couldn’t take one step. He fell hard to the floor. He damaged ribs, received a couple of lacerations,and broke his glasses.
I went to the administrator and told him I wanted Al off the Exellon Patch now. He grinned at me and asked,” Do you want staff to just get him ready in the mornings and then bring him to the dining room so he can watch TV?”
“Will he get any better observations this way?”
“No, no one is in there. Everyone is working to get staff up.”
“Then I hardly see how that can be beneficial to Al.”
“I want that Doctor R. taken off of his case. I didn’t ask for her or send for her. In fact, I don’t even know anything about her. She won’t give out her phone number. I don’t even know if she is from in town.”
“Well she didn’t end up being here without your permission.”
“Excuse me, she did end up here without my knowledge. She was brought in by your facility when you decided to place Al in isolation. I have argued the point of putting him on drugs that could make him worse, but I lost. So much for my guardianship.”
“If you don’t remove the drug and her from my brother’s care, I will be forced to go to the public phone and call the State Board of Health. You are not his doctor nor do you have permission to be calling in whom ever you wish.”
Smile from his face leaves.
Instead of answering comments last night, I had done some heavy-duty research on this new drug. I discovered that it can cause worse heart problems. Oh ,my, Al is a heart patient with CAD. It also causes fatigue, loss of appetite, and dizziness, plus UTI’s.
“Now because of this stupid drug I didn’t want him on, he has fallen and hurt himself this time. He has had to have a sterile Catheter take, and x-rays. I am now also responsible for purchasing him more glasses.”
Still no smile.
I stood up and shook his hand like a nice lady. I gave him my biggest smile, then I trotted out of his office. About a half an hour later, the Psyche Doctor called for me. Our conversation went like this.
“I hear you don’t want me on the case any longer.”
“It isn’t that you are not a good doctor, I just don’t want a shell for a brother. I explained to you with great intense that I didn’t want you putting him on anything that would destroy who he is, but you ignored my words. So yes, I want you gone and I want the patch Dcd.”
“Alright, no problem. I wish you luck when you take him home.”
“It will be rough, but it will be him and me. I understand where he is coming from. You don’t know him, and I will be able to keep a closer eye on him.”
For now friends, I have limited power over his food intake. When he comes home, I can do a better variety. Usually what they offer Al is fried chicken, or baked fish or a hot dog. Always red beets or green beans, glazed carrots, or Brussel sprouts. Cinnamon apple rings, ice-cream, once in a while cake, or fruit cocktail. It doesn’t waver much from this menu in the seven months he has been there.
Today he didn’t eat half of his lunch. I know that Al has cut way down on his eating but yet he gained two pounds. I am going to chalk this up to Edema in his feet.
After lunch I ran to the eye vision place and had his glass frames replaced. When I got back I planned to visit but he was asleep and I couldn’t wake him. I left his new glasses and whispered goodbye.
Now I am home and with me I brought most of Al’s cars he had at the facility. I asked my son if he could come down and find some more space for shelving. I need to put these cars somewhere, and his closet is full.
My son said maybe tomorrow because today is his birthday. Well crap on me. I had a cookout and birthday party so to speak on Monday and gave him money, but I guess I forgot to say the big words, Happy Birthday to him. Even at 33 years old my kids still need to hear those important words. I did it, I said it, and now is well with him once again.
- Deciding to Live With ALS, Not Die From It (abcnews.go.com)