Standing Ovation For my Blogger Friends

I have a big list of to do things laying in front of me. I am dead tired. I slept terrible last night and was up very early. I am getting ready to take a nap, but I could not let the nap begin without first talking to each of you.

The wonder of prayer is bigger than anything experienced here on earth. I curse myself for being a doubting Thomas, but being tired and frustrated makes me weak.

I am so fortunate to be centered with bloggers. I am able to come to you with tears, joy and requests for prayers. I know I do this quite often, but then again, there are many issues going on every day.

For this day, the meeting went wonderful. I met with the doctor. They are going to be sending him to a different neurologists for second opinions. Al was calm today. I managed to not have to involve the television station, news reporters or the State Board of Health for this one time.

I will be keeping these numbers handy as it seems the rain always pours at a steady stream when it comes to my brother.

It was God and the prayers that came from all over the world that helped Al to be able to return to his own room today. To be able to use his weighted silver ware. To wear his shoes, and to have unlimited drinks.

Although I was happy for him and I, I could not let it slip by what the nurse over the weekend has done to me emotionally and to Al abusively. I did meet with the Top Dog of the facility today, and I spilled my guts about everything down to Al not having his teeth brushed and no drinking water.

If she refuses to make a change with this nurse, or the nurse continues this week with her same attitude I will call my numbers. Al is safe and sound, but for me, my eyes are wide open and my ears are on high alert.

Thank-you each one for the circle of prayers. Never doubt that there is a higher ground than the one we walk on. This is my motto from now on, when I am weak.

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Can Hear Me in Other Countries?

I am screaming. Can you hear me?

I went to see Al today over the lunch hour. I had a whole set of different plans than what others had for me. I went in and had my head held high ready to do battle if anyone stepped on my toes.

I ask the nurse to have someone get Al ready, including shoes and socks and she just stared at me. She immediately got on the phone and called that psyche doctor and then handed me the phone.

“Hello, Terry?”

“Yes, this is she.”

“I’m afraid that you can not take him out of the facility.”

“Why? I am his sister and guardian. I want to take him out to eat and to an outing.”

“I’m sorry, I am in charge now over him since he is trying to kill himself.”

“Excuse me? You are not in charge. I don’t even know you. You are not one of Al’s doctors. I am his sister and his guardian.” and after a deep breath;

“I read the doctor’s report. There is no suicide threat. The doctor saw nothing. In fact the doctor has stated on the discharge papers that this is due to Dementia, PDD.”

“You can not take him out until after I have assessed him tomorrow morning.”

I smiled the whole way through the conversation. I was so darn nice I was making my own self sick. I wasn’t going to get Al in any other trouble because of me. I thanked her for her time and reminded her I will be there in the morning.

I went to see Al and had to tell him that we could not go out. Immediately the tremors tripled. He and I had planned all week to go to the local car show where there was going to be a 1921 fire truck and Al’s favorites, vintage cars.

I was seething inside but dared not show Al my anger. I decided to eat lunch with Al. I wept inside as I saw him trying so hard to use plastic silverware. There was no weight to them and he could barely keep his tremors under control to get food on the cheap plastic. Yes, they took a way his only way of eating weighted silver ware because he might hurt staff with them or himself. To this moment he still has no water in his room. No water except for meals and the way he sweats, oh my gosh. Three days of this crap.

I knew at that moment I was at the boiling point and I could not stay there. I would end up yelling at everyone there and maybe doing some threatening myself. I worked hard to be bubbly during our lunch, but Al didn’t really notice me too much. He was trying to get the food in his mouth.

In the corner of Al’s mouth I noticed a big crud of food and drool. He had not been shaved today. I have tried to convince Al to let me shave the mustache off because of drooling and the food attaches to the hairs but he wants to keep it. If it is cleaned after every meal I can keep it looking alright.  He must have read my mind because he said, no one shaved him. I told him that I had bought him a brand new electric shaver yesterday. The nurse was going to charge it for this morning.

He also stated that since Friday he has only brushed his teeth once.

I thought I was going to blow my top. Then Al said he would like to have his Bible. As soon as his nurse walked by us in the dining room, I stopped her. I asked her for Al’s Bible, and for his tooth-brush and razor.

She tells me,”Um no he can’t have his Bible.”

I looked at her with snake eyes and said,”If you  refuse him his Bible you are going to wish that you had never said no. I want him shaved and his teeth brushed. Even prisoners are allowed to brush their teeth and shave and they are entitled to a Bible.”

I thought she was going to collapse right there on the floor. Her eyes got so big they were bigger than full moons. After lunch I pushed him back to his room. He was a sweaty mess. I knew that I needed to get out of that place but I wanted to make sure Al got what needed to be done for him.

Two aides finally showed up and they said,”The nurse said there is a Bible in the dresser drawer.”

“Is it his?”

“No, it belongs to the facility.”

“Wow, Al has been here six months and none of you still know that Al can’t see clearly. He has a large print edition in his room and I want it brought here right this minute.”

They laid down his toothbrush and toothpaste and took off. They didn’t come back for sometime, so I ventured out in the hall to see what was going on. Soon here comes those two aides with the nurse. I was ready with armor on to do battle when they said something I wasn’t prepared for.

“Um, did you say you brought Al in a new razor yesterday?

“Yes, I did. I handed it to the nurse on seconds, Rachel is her name. She said she would charge it and have it ready this morning for him.”

“Well we searched his room and we didn’t see any razor.”

“Well I guess you better start looking in other places then.”

She finally found it locked up in the nurse cart. It hadn’t been opened so it wasn’t charged. I blew out a big breath from my lungs and the one aide said she would plug it in and shave Al.

I also stated, “He is a sweaty mess. I took his shirt off and sweat is pouring down his back. The pants that he has on are inappropriate because they are sweats and it is 80 degrees outside. He has several pairs  of shorts to wear. I also noticed that he has big sores in between his legs from not being washed each day. I tackled these last summer and so I know what he is in for with infections unless he is washed up every single day during the summer.”

I walked with the two aides down to Al’s room and made sure they didn’t leave. I hugged Al good-bye and said I would see him later. He cried. I know he didn’t want me to leave, but it was for his best interest that I did.

It just so happened that today the facility had traded a picnic for some work done by a local church. The facility had grilled hamburgers and hotdogs. There were pasta salads and chips. For dessert there were cute cupcakes with white swirled frosting on top with a cherry.

When the servers got to our table I requested that instead of the normal pudding they give Al that he have one of those adorable cupcakes. I started laughing so hard I thought I was going to pee my pants when she told me,” The hamburgers and hotdogs and cupcakes are for the church. Residents don’t get any of that.”

Al pays $7,000 a month to stay there. He is kept in an empty room at the end of the hall. He has a tinker bell that he rings if he needs to get up or use the potty. He can’t have his silverware so he can eat. He can’t have his own Bible, and now he can’t have one stinking cupcake.

Because of the church being there, I had parked outside right in front of his room window.  I was so glad that I had a front row seat. I got in my car and started it. I rolled down the windows and looked up. There were the two girls who were taking care of Al.

Now take in mind it takes less than four minutes to get from his new room to my car. In four minutes they had shaved him and washed him up, changed his clothes, helped him brush his teeth.

Bull shit!!!! I watched them. They finished shaving him but didn’t let the razor charge. They took it out of his room. They did not wash him up. He was trying to brush his own teeth with no help. No wonder he has caked on food all around the edges of his teeth. Then they wheeled him out of the bathroom and put him back on his bed with no clean shirt and no washed up skin, with the sores in between his legs unattended to. There was no wash rag or towel that entered that room or exited that room. I was so  darn close to the window I could see it all very  clear.

I left and stopped at the grocery store. I wanted to get groceries but I couldn’t keep the tears out of my eyes. My mind was racing on the abuse I knew was happening to my brother I love.

I am a dangerous person right at this moment. I could mouth off throwing darts so bad at this moment. This is why I have to stay here. I am debating whether to go back at dinner hour. I probably can get myself together for another picture show by the time three more hours pass.

I know Al is trying so hard but he said he feels so alone and no one wants to be around him. I tried to picture what I would be like locked in a room for three days with no human contact. Not being allowed out except for meals, and this is what is making me think I will be back at supper with another fake smile plastered on my round little face.

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If I Don’t Get This Off My Chest, I Will Go Nuts

Last night I went to bed very early. My mind and my body were beyond exhausted. I feel like I slept decent, but I woke several times. Each time before my brain was in thinking mode, Al and the facility were right there.

I kept thinking back to last night when the  nurse told me a couple of times that every time she walked by Al’s room he would glance up and see her and he would put his call light on. She commented on how it was becoming very irritating to her. She had work to do and all he was doing was asking for negative attention.

Negative attention, I found to be an interesting phrase coming from a nurse in a nursing home. She was too busy for Al, too busy to say hi. What I got from it was that Al was feeling alone and he was seeking out human to human contact. No one that he could connect with in his life goes to see him. His family doesn’t show up. Ten years of the same church, only the minister has been there twice in six months. He has never received mail in the form of cards. It is just him and I.  I understand how he once again feels abandoned and is on that call light.

I do my very best to be there with Al in person as much as I can. I am usually there every day or every other day. The only time I have missed is the three weeks that I fought that bronchitis back in winter. I worried that Al’s tender mind would think I had also abandoned him, so I called him each day.

It seemed that the cordless phone was occupied or they were about to receive a very important call, so many times I had to trust that my messages were relayed.

Don’t we all require and need to have human contact? Isn’t it a true statement that many youth are turning to sex, not for the sex, but for the words spoken and the human touch? Is my brother no different in his own needs? Sometimes special needs people are even more loveable and require more love. Look at the label they have over their head, Special Needs.

This has been one of the biggest humps on the camel’s back that Al is so depressed. Instead of spending more time with him, our world here in the U.S. pops pills into our bodies to replace what should come freely from our hearts.

Al is now on two antidepressants because he is alone too much.

I think of Al on a sister level and sometimes this makes life difficult. There are times I do not understand people’s decisions and the ideas of where they came from. Maybe I am simple-minded. I look at Al as a brother. an abused child, and a guy who was shunned by his Dad.

Now he sits in a lonely room with a TV and a roommate that doesn’t speak. The staff ignore him because they are too busy. He is lonely and crying out. He got so offended when the Social Service lady told him I had to bring home his coca cola can filled with eyeglass screwdrivers because she was afraid he would hurt her with them.

He has never forgotten this and with the disappointment of not coming home when he thought, his brain went into automatic mode and began to blame himself for not coming home. He wondered what he had done wrong to cause this. He told me he must have screwed up again. Thus the topic of the screwdrivers became utmost in his mind and he spoke of it constantly the past 24 hours.

It isn’t that he wants to hurt someone. He is referring to the screwdrivers as the wedge that comes between people and him. No one can speak to him because he is bad. They took him out of his room because he was voicing in a mentally challenged way about the screwdriver.

This was an automatic trigger for the facility that Al wanted to harm himself or others. I heard a couple of nurses state that Al said he wanted to harm a staff. I questioned Al thoroughly about this and he did nothing but cry and say he never said that.

I have no proof. I have not heard any of these words come from his mouth. Even when I was laying the law down with Al yesterday about the way he speaks to others, not once did he admit he said those words.

I don’t know who to believe but I can see the tornado spinning and I am the eye in the middle.

If this psyche doctor who is to come in on Monday morning to assess Al decides to go over my head and place Al in a mental institution, I will scream at the top of my lungs. I will throw the biggest, adult temper tantrum  anyone ever witnessed.  I will call every TV station. I will talk to anyone who will listen. I will bring down this place with the truth about how some nursing homes can be. I will place Al in his wheelchair and I will bring him home while they stand there wondering what it is I am doing.

I know that Al speaks of death a lot. He is in pain and he wants it to end. He wets himself and he is highly embarrassed. He spills food constantly and gets highly frustrated from his tremors.  He knows that things he used to do are no longer able to be carried out.

He really doesn’t want to die, he wants an escape. He tells me God isn’t listening so he goes to the next best thing, death.  With Al’s simple thinking he believes that if he ask God to take him home, God will do it because God loves him. Death makes pain go a way. He is more simple-minded than me and it is very easy to figure out.

Sometimes I can see the abuse that I suffered as a toddler come out like Al’s does. I want to be acknowledged also. I want to hear from people here at WP. I want to read the comments and see the number of Likes clicked. Aren’t I craving the same thing as he is? But with my brain working differently than Al’s I go about my life in a different way. I think abuse, any kind of abuse, is never totally forgotten in our heads. It can pop up in weird ways, but only seeing the complete picture does anyone figure out what is going on.

But would he go as far as to harm himself? That I am not sure of. I would like to think absolutely not, but I can not guarantee it. I do know that since he has been in this facility he has sunk to an all time low. They loved him at first. When his money was gone they told me he didn’t fit in. He has been filled with more pain and pills than ever. He is miserable and now it has gone so far as staff say he is dangerous.

They have placed him at the dark end of a hall with no bed alarm and no call light. He has a little bell that he is to use if he needs help. He was given nothing to drink except for mealtime until I bitched and threw a fit. Then they took him a four-ounce plastic cup of water. I was with him yesterday when he had to go pee. He kept clicking the little bell for what seemed quite a few minutes. Finally I hunted someone down and was told that I had to wait. They said there were only two aides for fifty people. What was I to say to Al? Go ahead and pee in your pants. I know how this makes you so happy. But instead I could say nothing but lie and tell him they were on their way.

I don’t have the answers but yet some things are very clear.

Al is in  pain 24/7 and he is tired of it.

The facility does not have time for patients that want to do more than sleep in their wheelchairs all day.

A mentally impaired brother has now been turned into a wicked leper.

The facility has not wanted him there ever since they took all of his money.

I will fight my very best for his human rights and for his dignity.

If I lose, the only thing I have to worry about is myself, because I will not want to go on knowing he is locked behind some padded walls with drool hanging out his mouth and he doesn’t recognize me. I would rather be dead than to see this.

http://www.youcaring.com/medical-fundraiser/too-much-pain-and-too-little-money/55964

Dear God, I know I was very angry with you last night. Please forgive me. I come to you on bended knees and ask for your help. Please give me the strength to keep fighting. Please hide Al under your wings and keep him safe from the evils of the world. Please let my mouth speak the correct words as I speak to the facility, that need to be understood. Please Angels, stay close to my brother. Let him feel God’s love and arms around him. I say this through broken tears dear God, as I have nowhere to turn but to you. Amen.

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The Meeting With the Top Dog

Yesterday I called the facility to set up a meeting this morning with the Administrator. He tried to find out what it was about but I told him I would tell him when I arrived. This morning I said a small prayer to act like a responsible adult and not cry or act frustrated in front of this man.

I walked in calm and breathing normally. We shook hands. He smiled and I returned it. It is not hard to look at a young man with beautiful eyes and nice hair. LOL I told him everything. I spoke to him about Al sitting in the bathroom in his wheelchair while he had to figure out how to go pee when he didn’t need to.

I told him about the stolen candy. I mentioned the cookies that the nurse had made such a big deal about. I told him about my unexpected visits and how the two staff members jumped when they saw me there. I added that I want a staff to be near by when he is dressing in case of toppling over.

I spoke to him about the nurse who discussed Al’s weight loss in front of him. I explained how he went back to his room then telling another aide he was going to die because PD was taking his weight a way.

I tried to get my point across for the umpteenth time that no one should discuss Al’s health in front of him unless it is good news, as he builds a case around it for days.

I also reminded him that I had been talking with the nurses and charge nurse and I could get no where. Now I was at the top of the rank expecting help.

He told me to go out and replace the candy and bring him the receipt. He also said with a big smile that he would look into all of this. One thing I did appreciate was he was taking notes about the entire conversation.

So now I sit back and wait to see what happens……All in all I do pat myself on the back because I acted more like a mature caring adult then a hurt sister. But I did get the point across that Al is my brother and I will stop at nothing to ensure he is at much peace as possible through his journey of Parkinson’s.

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I Don’t Know

My birthday did not consist of sleeping in today. Instead I threw on some plain clothes and sneaked into the facility where Al is. You ask why would I do that on a day when I could sleep in?

The answer is because I love my brother. I took some advice from a friend and decided yesterday to go see him on a time they never would expect me. It was 8:15pm and Al was in bed asleep.

Wow, I thought to myself. Talk about going to bed early. I woke him up and he didn’t smile. He didn’t talk for a few minutes. But when he did, he proceeded to tell me about the entire day.

He started off with the fact that the nurse was upset because he was eating the cookies I brought him. He then went to the fact he struggled for half an hour to get dressed because no one was there to help him. He told me about how they sat him in the bathroom door way for an hour until he finally had the urge to pee.

I figured out that when Al is upset and he can’t find relief he sleeps. I went out to ask the nurse how he had been doing this evening and she said fine. I questioned her on the walking bit. Al keeps telling me every day this week that they are trying to make him walk down to breakfast.

She stated that she highly doubted it, never having seem him walk. I think I figured out what that was all about. They ask him  if he would like to walk and he says no. They then tell him to push himself down to the dining room. The rules are that if Al is having a good moment he is to push himself down, if he tries and can’t do it, he is to ask for help and they push him.

I believe that Al doesn’t quite get it. He wants to be pushed all the time and I think they try to get him to push himself. He should also in my opinion try his best to go on his own.

While I was there I left him a bag of M&M’s mixed with Snicker miniature bars. He was too sleepy to try one so I sat them on his bed side table and told him I would see him the next day. He fell back asleep before I exited his room.

This morning I got up early and walked into the facility. I went straight to his room and Al was on the potty and the aide was telling him to get dressed. There was Al, one aide, and a nurse in the bathroom with him.

I quietly walked over and sat in Al’s recliner. The aide was telling Al to get dressed and the nurse was handing him a wet wash cloth. They turned to leave his room and jumped back startled when they saw me there.

They turned back around and the nurse washed Al’s back and got him dressed. She asked me why I was there so early and I told her I wanted to get to the bottom of Al’s complaints. I said what better way to find out than to be here.

Al hadn’t seen me yet and he was crying and telling the other two about his candy. I listened with interest as he told them my sister brought me a bag of candy. When I woke up at 1am I was going to have a piece and it was gone. Someone stole it.

I piped in and said that I had indeed brought him candy. I told them where I had left it and that Al was asleep when I left and had never touched the bag. The nurse said she would ask the second shift nurse when she came in.

I couldn’t help myself even at this early stage of the morning. I asked and started laughing, Do you really think anyone is going to risk their paycheck by admitting they took a bag of candy?

Both the aid and nurse just looked at me. Sorry, friends, but when I see the scales tipping in my mind, it is definitely going in the direction of lie and keep the  job. I told them I was irate. The candy doesn’t come cheap and if the staff had to stoop so low as to steal candy, then they better give a raise to these over-worked people.

I also brought up about the other nurse and the missing cookies. Making comments that he is eating sweets. This nurse told me they do encourage Al to not eat too many sweets. That his weight gain is their concern.

I said, I appreciate this fact that you are a caring staff, but the reason I have brought more garbage food in is because of a seven pound weight loss in five days, not weight gain. She said oh. He was dressed and ready to go to the dining room when the aide told him to get going. The nurse said, no, we push him down. The aide said, no we make him push himself down. I thought, oh wow, you two really got different stories here, in the same room, and right in front of me. The nurse than asked Al if he wanted to go on his own or be pushed and Al said to be pushed that his knees were hurting. She then pushed him down.

I searched his room and there was no ziplock bag anywhere. I went to search the other wastebasket and the aide said they already emptied it before I arrived.

So in ending this, Al is not actually walking I believe. He is struggling with pushing himself on his painful hours and gets upset because he has to asks so many people to push him down.

I believe as well as I am sitting here typing that there was no intention to dress him.  I had witnessed them both walking a way from him until they saw me. I also believe that there is an M&M and Snicker bar thief. It  happened somewhere after 8:30pm and before 1am.

This crap is going to stop. I don’t know how I will stop it yet, but when you start taking the candy that I bought and took to my brother, you thieves have crossed the line in my book. I want that candy replaced do you hear me staff???

I know it sounds funny, truly I do. To get upset over a bag of candy. But this isn’t the first time and I am sick of hearing story after story this whole week from Al about things that are happening and the staff says those three little words, I don’t know……

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Wow, What a Day

When I went to bed last night the winds were howling and it was snowing. This forced me to pull the covers up closer and gave me a quiet moment to reflect on yesterday. Visiting Al was something I wish I had dreamed last night, but instead it was a day time reality.

When I went in to see him the first thing he did was complain about how long it took him to get dressed. He stated that it was a half an hour. I asked him why he didn’t get help from the aid standing near by and he told me he got dressed alone, except for his socks and shoes.

I had also taken him some of those soft sugar cookies with yellow icing and sprinkles on top. Are you familiar with these? You buy them in the bakery area. I will grab some for Al when they can be bought on the day old rack. I had them first here at home so I had managed to stick my fat little fingers in them first. By the time I had placed them in Al’s fingers there were two missing.

I believe there are 10 cookies total in a package. So when Al and I were conversing he also told me that the nurse the night before reamed him about how many cookies he had eaten. This upset him quite a bit as he explained to me that he told her the cookies weren’t full when he got them. What I don’t understand about the cookie issue is, the facility states they can not refuse Al any food. He had been eating himself all most sick and so a few months ago Al and I started doing his menus for each week. This is stuck too and Al can’t change it without my approval. So why was the nurse on him about the cookies? Even if she was genuinely concerned according to the facility they can’t stop him. So why get him all keyed up and go into the guilt and crying trips?

He said she didn’t believe him. From there on out it was a mess. I was there for about three hours and he had changed to talking to me in a way I could understand to either totally messed up or the Parkinson’s Dementia.

His biggest upsetting story was that usually he goes potty right after breakfast but this time he didn’t have to go. He told me that the aid said he would go so she placed him in the door way of the bathroom and made him sit there until the desire came for him. He stated that he sat there for an hour.

My biggest problem is not what you would think which may be the tears. No my biggest problem is while he remains in that place whom do I believe? Of course, I want to believe Al. He is my brother and has been known to lie to me in the past. His mentality is about 10 years old and maybe you can remember or even have kids around that age. If they think they are going to get punished they may lie instead of speak the truth. That is where Al would fall into the category. But to just outright lie is not his nature.

I have to also take into consideration that people who see animals on the floor smiling on them may be confused about the story they are telling.

Al was still upset during lunch but when his food came it did deter his mind for a while. After lunch he was right back at the same story. His issue was that the nurse that he told about his morning didn’t believe him. Which was that he dressed with no help and the cookie ordeal.

Another thing I learned is that some Dentist I did not know came into his room yesterday and got Al to check his teeth. When Al mentioned to him that his sister had not told him about the visit, the dentist replied, don’t worry , the insurance will pay for this.

There are strict rules that no one is to be in Al’s room without my permission and knowledge. I have a couple of reasons that I won’t go into now but I have always told Al that if a professional or not wants to see him, I must know about it first and then I will tell Al.

After all of this had gone on for so long I asked to see the head nurse in charge of the building. I explained to Al that I would look into all of this. It was the only way I could satisfy Al and also let him know that I believed him.

Whether I believed Al or not, I will still act on his behalf and try to dig to the truth. When I had my short little meeting she denied anything I said. She said,

Al always has someone in his bathroom when he gets dressed.

You know that Al gets very confused.

You gave permission for him to see the dentist.

Now first of all Al is up and dressed and down to breakfast by 8am. How does this charge nurse know what goes on early in the morning when she doesn’t arrive until 8am.

I realize Al gets confused, but I have always believed that even the biggest rumor starts out with a bit of truth.

The Dentist, right before Christmas I received a snail mail stating Al was going to be going to an out-of-town visit to an eye vision shop for an exam. First of all with all the good doctors right here in town why would they take him a  half hour drive a way. Secondly, when I received the letter I called plus went in and told them Al had just been to an eye doctor in October for an exam and new glasses, so this was unneeded. I also told her at that  point and time that because of Al’s issues I had particular doctors that I wanted Al to remain with. Therefore we would not be needing their doctors who are linked to the facility’s accounts.

The charge nurse took me up to the nurses station and pulled Al’s file. She showed me where I had signed on the dotted line on the day I had brought him in that I did give permission. Evidently when I went in December than about the eye exam nothing was actually changed on his file from my request.

I don’t know if someone forgot to do it or if there is a kick back of a resident using their choice professionals. I lost on that one and now have to start over again on Monday to try to get this changed once again.

When our little chit-chat was over and I tried hard not to catch the ball of guilt I was thrown and the head nurse trying  to make me realize Al was a patient there and therefore out of his mind, I went back in to see Al. He was laying down with his bed alarm hooked to him. He was crying and getting a little loud with his words.

His point he was trying to make was that when he first lays down they hook the alarm to him and place it on the back of his shirt. But when he is tired of TV he likes to flip over to his stomach and go to sleep and he can’t because it sets the alarm off. He has moved too much. What he was trying to express but the nurse didn’t understand was that he needed someone to release the alarm when he flipped over and then reattach it. Al’s mental issue isn’t connecting to the fact that all he has to do is turn his call light button on when he wants to flip over and they will change the placement of the alarm.

The nurse went on and on about how she had to keep it out of his reach, and she wasn’t changing her mind. She and Al argued for several minutes while I watched the ugly scene happening.

I finally stepped in and told her what he was trying to express but she either didn’t get me or by then her nerves were frazzled from talking to Al. So this went back and forth with the conversation being from the missing cookies, to no one helping him get dressed, being placed in the bathroom for an hour , to the alarm.

Once again I left Al crying and feeling like no one cared or understood him. I told him I loved him and that I would see him soon. I went to my car and called the doctor. I explained most of what happened. Now they are arranging a special doctor to come and see Al to see how he is doing and if they can do any medication changes.

I want Al to be content, but  I don’t want him all doped up. Seeing him all drugged up to keep him quiet is like me watching  him just lying there waiting to die. There was no talk about whether Al was telling real stories or not. It was all about how can we change this to keep him quiet.

I don’t know what is going to happen but I told the facility and the nurse from Al’s doctor that I demanded a visit with this new doctor  right before he went in to see Al. In fact as I am sitting here thinking about it I may do this plus be there during the visit. I just don’t trust all doctors, sorry. And since Al can’t speak for himself, I do.

I want to be informed of what thoughts this new doctor has. I want to be informed of what changes he may want to make with Al’s medications and I want to know the side effects and changes I can expect.

I am now to a point where I want Al comfortable but not so drugged up he is out of it, but I don’t know if I can have this happen or not. I am not sure if Al told all the truth or bits of it or if Dementia was involved. I don’t know if the facility is telling the truth or protecting themselves.

All I know is that I can’t wait to get Al home. It will be my eyes that see what is happening and I won’t have to hear second-hand stories. The more Parkinson’s advances the harder it is to keep him calm but I am darn sure going to give it my best shot.

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Pain and Emotions

Parkinson’s UK balloons

I got a call from the nurse where Al lives and she told me that the family doctor had just been in and had prescribed an anti-depressant for Al. I freaked and asked her when they were going to give him the first dose and she said the first thing in the morning.

 

I asked her to please wait until I got back with her. I needed to talk to the doctor. I called and left him a message and he returned my call immediately. I told him about how two years ago Al was last on one of those types of medications. I explained how he had a terrible seizure from it and he couldn’t walk for almost six weeks.

 

I told him my fears and asked him if he still wanted to give it to him after my information. (This doctor was not our doctor two years ago)

 

He said, “Terry I just saw him. He is in so much pain and so depressed and sad. He is on the pain patch and now two more weak pain medications. He can’t take anymore. There is nothing I can do but to keep him comfortable. We have to try to lift some of his sadness. I have weighed the pros and cons and the pros are slightly in his favor. He does have the risk of seizures again but we won’t know unless we try, ok?”

 

I started crying right there on the phone. He told me, “Parkinson’s is a rough and dirty disease. It is beating Al up. How can you and I sit here and watch him suffer every single day.”

 

He didn’t know it but I was sitting here nodding my head. I knew I agreed with him but it just seems there is no licking this disease. I told him that I would call the nurse back and give her the go ahead for the medication.

 

I know I am supposed to be strong but here I am once again, a big weak mess. Watching the life disappear out of his life is harder I think than anything I have witnessed in a few years.

 

 

Keeping the Secret

Micrograph of an artery that supplies the heart with significant atherosclerosis and marked luminal narrowing. Tissue has been stained using Masson’s trichrome.

I don’t plan on being here tomorrow for a while so I went to see Al today. He was sleeping when I arrived. I woke him up and he waved and I saw a half a smile. He sat up and began to tell me about last night.

He said it was real hard to eat because he didn’t feel good but he made himself eat. From 8p to 12a he said he felt funny. He seemed pretty good now and even after I asked him the 20 questions I didn’t get any real answers.

He told me a story about how the aides made him walk behind his wheelchair last evening after supper. I asked the nurse about it and she talked to Al in front of me. She told him that she pushed him down to his room. Then he went on to another time when he used to walk and he didn’t feel well enough to walk. She told him he was talking maybe about last week.

It was obvious that he was having some dementia. This nurse is my favorite and I know if she said she pushed him, she did. He and I ate lunch together but he was pretty much in the dazed look for the most part. He kept telling me he didn’t feel good but he didn’t know where he felt bad at.

He was eating and except for the Parkinson stare I couldn’t see anything. As usual I finished my meal before him so I just people watched. I was watching Al trying to get the food on his spoon but most of it was going in his lap.

Then I saw the problem. I saw it but I couldn’t say anything to him. I saw his nurse standing at the cafeteria door so I told Al I would be right back. I walked up to her and asked if she had a moment.

We found a little spot where we could talk and I told her that I thought I knew why he has not been feeling well. I explained about his gray nails. When I looked at Al trying to eat the gray nails stood right out at me.

My stomach started hurting and I could feel my heart racing. She said, I am sorry Terry. His heart is just really suffering from his disease. I knew in my heart that is what she was going to say.

I swallowed the lump beginning to form in my throat and told her thanks for her help. I plastered my smile back on my face and wiped the one tear trying to run down my face. I walked back over to where Al was sitting and I sat back down.

He gave me another half-smile and I placed my hand over his and all I could get out of my mouth is I love you Bud, don’t ever forget this. He gave me a big smile then. He took his hand and rubbed over his chest area and I excused myself to go to the ladies room.

I came back in time to push him back to his room. I helped him on the potty and then I came home.

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If I Was Younger I Would Become a Neurologist

I am exhausted. I didn’t do any work today and this is why I am so tired. Instead at the crack of dawn I answered the phone. It was the nurse saying Al didn’t feel well. He was cold and clammy and was having chest pains.

Did I want to send him to the ER? Um, let me open my eyes and get my brain thought process going. What do you think? Do you think he needs to be sent in?

I really received no satisfaction so I asked her to ask Al if he wanted me to come in to see him and he said yes. I hurried and got dressed and grabbed my medicine to take with me. I figured I would just take it with a glass of water at the facility and find something to nibble on somewhere.

When I got there Al did not look good. His face was pale. He told me he felt light-headed. He also said he didn’t eat supper last night because he didn’t feel good. Then he changed it to a little bit he ate but not much, so not sure on the supper deal. The nurse didn’t seem to know anything about this.

He stated his heart was beating really fast. He was cold and clammy and his BP was 172/90. Not extreme but a big enough signal for me to ask Al if he wanted to go to the ER and he said yes.

The EMS came and got him and I left first sneaking into the gas station to buy a bottle of water and a nasty pre-packaged turkey sandwich. I ignored the tough bread and ate the turkey out of it.

Off I went to the hospital. The EMS and I met each other there. I watched them carry Al inside and then I popped my body in the waiting area. They made me wait until they got him comfortable. That is a new word for me. I don’t remember Al being comfortable for at least a year or so, but nice thought.

The nurses and doctors were disagreeing about what was wrong with him. Some said his heart, others said it was the tremors mimicking a heart attack. As before when I was there, the machine was all over the place.

Two or three nurses would come in at a time and check the sounding alarm and say, “Don’t worry, it is just his tremors.” When I told the doctor that we were here two weeks ago and the heart monitor showed his heart going clear up to 250 he told me that was impossible. I said, ” I saw it with my own eyes.”

“He would be dead if his heart beat went that high.”

“I don’t know, I am not the doctor. I just know what the numbers were saying.”

They did a Cat Scan on him to make sure his fall hadn’t damaged his head in some way. Seeing the band aid over his eye and forehead from the rug burn he acquired in the bathroom on the tile floor. It is a doozy too, let me tell you. Nice and long and looks like a rug burn for sure.

Al went from clammy to soaking wet and each time he did this his chest would hurt. The staff seemed to be stumped. They said it wasn’t his heart but they gave him baby aspirin and admitted him.

Now he is staying over nite and they are documenting and monitoring his heart. They gave him some more baby aspirin. He continued to get clammy and soaked from sweat up until I left.

His heart doctor is to be there in the morning and they are going to see if his neurologist will come in also. I don’t know what is going on. The last doctor I talked to was the admitting doctor. My grandmother was just nuts about him. I remember her speaking so highly of him for many years

He told me,” It may not be his heart causing the great fluctuation but it sure is wearing his heart down. We need to see if there is some way to calm his body down of those tremors. His heart will be exhausted at this stage of the disease.”

I had argued this point with the ER doctors before when I questioned them about the wear and tear on his heart from the massive tremors. They always stated that it was not his heart. But here is a doctor that says it is making the heart work so much harder trying to cope with the tremors. Since he is a heart patient it is going to make the heart tired.

I was exhausted so when Al wanted to go to sleep I came home. I told them to call me for anything, because I love him. Call me even in the middle of the night. They told me Al was one lucky guy to have such a loving sister. I said, “He is my brother, I could react in no other way.” They smiled and I came home and napped.

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Al Fell Again and Still I Was Not Called Right A Way

I haven’t posted since earlier this morning for two reasons, maybe I should say three. 1. To give you all a break from my frequent posting. (I’m sorry, I can’t help myself. I guess I am a chatterbox.)

2. I did some remodeling in my living room and that took the bigger part of the day.

3. I received a phone call this morning from a nurse at Al‘s facility. This call has been on my mind all day. Let me tell you something, there is no rest on the weekends for the wicked. Except I am not wicked.

At 1am in the morning someone noticed Al was not in his bed. They went to his bathroom and he was on the floor. The report was that he was on hands and knees so they didn’t consider this a true fall. They said he was fine. She told me he had a small rug burn on him.

I am thinking small as in the small bruises that he received two weekends ago when he fell. Those bruises were the size of peaches. I kept fussing with myself whether to go in or not to see him. I was wrapped up in my home project and they told me he was fine.

I did not end up going but there is part of me that wishes I did. Tomorrow I will be in there for sure. The nurse told me that Al got rude with her. I hear this word quite often, rude. Al’s mood and personality has seemed to change these past weeks. He smarts off they say. He is rude I hear from them.

I called a good friend of mine who has a family member who has Parkinson’s farther along than even Al. I asked her if this could happen, the personality change. She said absolutely yes. Caused from PDD, Parkinson’s Disease and Dementia.

She said that he may have said it and then possible later he wouldn’t even remember it. I know different times I have scolded him for his rudeness and he starts crying immediately stating he never said anything like that at all. I back off because I have no proof one way or another.

The strange thing to me about the call is I don’t like being called 8 hours after the fact. I have told them repeatedly to call me as soon as they know he is stable. I don’t give a hoot if it is in the wee hours of the morning or not. I want to be notified. I want the choice to either go in or not to check it out. This is not the first time this has happened.

His last fall they told me almost 48 hours later. The other thing that bugs me is how in the world did he get a rug burn? The only rug or carpet in the whole building is in the hall. This has me puzzled if he was on his hands and knees. Did he fall and was trying to get up? Did he go head first like he usually does? But still, how did a burn come on him.

The nurse told me that he told her he wasn’t going to  use his call light anymore because he waits so long for staff to help him that he pees his pants, and he gets very embarrassed when he wets himself. The wetting himself is happening more and more often. I don’t think it has anything to do with Al holding it or not. I think it is the PD.

I have asked before about putting a Bed Alarm on his bed and his recliner. They declined my suggestion stating Al doesn’t want it. They think he will become agitated and cause more rudeness or attitude for them. I say get the alarms and use it. The loud noise may scare him enough and remind him to put the call light on. He does forget to use the light. This has been an ongoing issue for some time.

I asked his neurologist about it last week and he said Al doesn’t want to fall intentionally. His Dementia is causing him to forget. In Al’s mind he just assumes he can walk so he gets up and tries.

Monday morning first thing, I am calling Al’s doctor and telling him about the falls that are happening more and more. I am going to ask him to write a doctor’s order for bed alarms. I have no doubt he will do this for me and Al’s safety.

Why did they wait so long to let me know…………Sorry friends, I am still upset over this. Tomorrow a new day, a new challenge, and a promise of hope.

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