The video I placed on here is how I saw Al today. I walked in on his lunch period and he was behaving the same way. Along with Al’s Parkinson’s Disease, he is also mentally challenged. Now he isn’t mentally challenged like you think. You can observe some of it by looking at him. Mainly his is in his thinking. He thinks for the moment. He only thinks in the future if it is a creature of habit.
I hate to admit it but I am a wreck. I am shaking inside. I feel like I just want to lie across my bed and cry until there are no tears left to cry. I do feel like I have no where else to turn. No other avenues.
When I walked up to Al his glasses were lying on the table. This is a sign to me that something is wrong. He spends a good part of his day very emotional, so I try to take this into great consideration when Al is upset. Sometimes he can get dramatically upset over trivial things.
Remember last week when I told you I stayed in the corner like a mouse and observed the staff telling him they could not push him down to his room? Well today, he was having an exceptionally bad day. Lots of pain. I don’t think that extra small dose increase is helping at all. Why don’t the doctors do an increase, instead of a baby step? I know, one step at a time. I don’t want Al to be on these strong pain pills, I just don’t want him to be in pain. Does that make sense?
Excuse me for being all over the place here. My mind is running much faster than my thoughts are. So Al and his dining room mate explains that the nurse told him to push himself down to the dining room. Now for you and me it is about a two-minute walk. For Al it takes much longer.
I want to believe the specialists that we saw in Florida who said that this bakers cyst that is growing into the back of the knee bone is painful. Every time Al bends his knees it causes pain. Now add the nerves being twisted along the shrinking muscles in his legs and I can only imagine how that would feel.
Al’s problem, and I state it this way, because the staff always blames Al for what is not done. The nurse told him that he needed to push himself. Al did, but what his mentality did not do was to let an aide or a nurse know he could not make it completely to the dining hall and he needed help the rest of the way.
He just kept on going and then the pain seared like a branding iron. He would not eat, and when he tried the tremors were so violent that the food went flying off of his weighted spoon. Al’s face was bright red. It was so red and splotchy I could not even have the nerve to snap a photo to show you.
I listened to the story of both Al and his buddy and I was fuming. The reason being is I have explained and explained until the color has been drained. I have smiled and smiled while speaking so I don’t look like a jerk and a grown child.
I went to the nurse and said, Please explain Al’s red face and why he is sitting down there an emotional wreck. He can’t eat and is totally a mess”.
She says,” I told him he had to push with his feet to go to the lunch room. I also put lotion on his face after he shaved”. To tell you the truth my friends, I am so sick of being the nice guy, I just want to scream to anyone who will listen. I want to put on my little red tail and red ears and go marching somewhere. I don’t know where, I just for this moment don’t give a crap about anything. I feel like I can’t win.
I told the nurse with my plastered smile,” I have explained over and over you are not to let him shave himself. He shaves in the same spot until his skin is raw and bleeding. I have repeatedly told every nurse that he is to have baby oil dabbed on his face, not lotion. There is alcohol in lotions and it turns his face beet red. He has cradle cap like an infant from the Parkinson’s Disease”. She smiled and said, “sorry, I forgot”.
I explained again about the bakers cyst and the nerves being pushed into the muscles. I told her if Al is having a good day, by all means I want him to use those muscles, but if he is having a bad day, I want your staff to help him.
She said,” Our goal is to keep him walking”.
I said, “I understand this totally and so do I want him to walk. But we don’t get everything in life we want.. If he is hurting help him. You have to remember his mentality does not help him to stop and think, hey, I can’t do it anymore. I need help”.
So she says,” So what you are saying is you want us to quit encouraging him to walk. You want him bedridden”.
I started to tear up and I didn’t want to. I forced those tears to remain in the eye lids hiding until I got out to my car. I said for the last time,”If he can do it, I want him to do what ever he can to keep his strength. But if he can not and is having a bad day, for heaven’s sakes help him. This cost 7,000 a month just for room and board. Surely someone can push him sometimes”.
The last thing she said was, “Well you know that he is in the dining room. Does this mean you want us to push him back to his room, instead of you”? The tears started to fall from my eyes and I turned around with my tail between my legs and walked away.
I had lost the battle. I wasn’t getting my point across. I saw shades of grey. They see black or white. I walked back down to where Al was and I sucked up the tears before I sat back down with him. He told me,” I want to go home. They don’t care about my pain”.
Part of me agreed but I am scared in a way to bring him home. Why? Because they have drained him of his money. I have a little bit here for emergencies for him. How could I afford to hire a caregiver, and could I take care of him totally by myself.
I wanted to come home and call Hospice but no matter what anyone says, this hospice here in my town keeps saying the same thing over and over. He has to have six months or less to move.
In my gut I know I could do a better job then they are. Partly because I care so deeply for him and I have compassion. He is in the middle of being switched over from Medicare to Medicaid. I am not sure it is a smart thing to try to switch him to another nursing home when he hasn’t been Medicaid stamped yet with the words of approval.
What if I bring him home and they don’t let the Medicaid process continue? What if they toss it in the trash because they are no longer going to benefit from him? I don’t want to bring him home if I can’t get the job done and I don’t want him in there being ignored.
They have one goal. Keep him walking, but where does that goal slow down and begin the comfort stage? The more that they push him the more pain pills he requires. Pretty soon he will be so drugged up he won’t know his name.
I have many concerns and I can’t get anything straightened out. I can’t get anyone to see he is a complicated human with special needs, he is more and more unhappy there than he was at home.
I just don’t know what to do anymore. I wish someone could help me figure all of this out. All I want, all my goal is anymore with Al, is to have him feel peace. To go through this journey of pain with as little as possible. I am no longer interested in seeing him walk a mile or a block.
I had him push himself from the dining room. I taught him to tell me when he was hurting too much to keep going. He made it on his own for about fifteen feet and then he began to cry because it hurt worse. I took over the pushing. We got down to the nurses station that we have to pass to get to Al’s room and she asked, “Why are you crying”?
Al said,”I tried, I really tried. I made it for a while but then my legs started hurting real bad”. Guess what she did? She popped him a pain pill. So this is why I think to myself, pain pills from over doing it, or less pain pills because we are helping………….You tell me, because I don’t know anymore
When we got back to his room, he told me he was wet, and believe me, I could smell it. He asked for a clean brief and then I found an aide to help him change. She came in and got a clean brief out of his closet and handed it to him. She didn’t ask if he needed help but turned around and told me, “He’s all set now”.
I sat in his recliner while he struggled to take two shoes off, his long pants and the wet brief. I watched the clock. It took him 11 minutes to get those things off. He had worked so hard at taking them off that he was a sweaty mess now. He couldn’t get his feet to lift off of the ground to put the clean brief on. I bit my lip watching him and then he looked up at me, and I asked,”Do you want help bud”? He shook his head yes. I went in and helped him get the new brief and his long pants back on. Next I helped him get into bed. He was exhausted from the work he had just done. His legs just don’t want to co-operate anymore or at least for this moment of the day.
I left him getting ready to close his eyes and went to my car and cried.
- Cost of Dying series (photos.mercurynews.com)
- Potential cause of Parkinson’s disease identified (sciencedaily.com)
- Wheelchair Incident at Montebello Healthcare Center Leads to Broken Leg (chicagonursinghomelawyerblawg.com)
- Ottawa-area man saved by quick thinking, paramedics say (cbc.ca)
- Documents Outline Deficiencies At Local Nursing Homes (stlouis.cbslocal.com)
- Study identifies a potential cause of Parkinson’s disease (medicalxpress.com)
- Scientists image brain structures that deteriorate in Parkinson’s (sciencedaily.com)
- Hospital: Leader’s tremors not Parkinson’s (upi.com)
- Silent stroke can cause Parkinson’s disease (sciencedaily.com)