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……

Good Visit

Main dining room

I was a little freaked when I went to visit him today and could not wake him. I realize he started a new medication for depression but it is one that is to take a few weeks to get in the body to work.

The aides were able t finally wake him and he had his shoes put on and helped into his chair. Off we went to the dining room. While  he was awake he was different from yesterday.

Instead of crying and arguing he smiled and said hi to every person he saw. We ordered our lunches and he chatted with me. It was nice to see this change. Are you sure Doctor, that this medication takes a long time to work?

Maybe he was just having a good day. There was a note waiting for me. When I read it, it said, My heart is aching for Al. I have never seen such a bad case of PD in my entire career life.

Wow, this note validated something inside of me. When I hear staff say that Al is just being obnoxious or being rude or mouthy, this brings a little inner peace to me. It is more the PD than it is Al. He can get mad like the rest of us but he is generally not rude and mouthy for no reason.

We ate our lunches and then he fell asleep. I woke him up and took him back to his room. He asked me to stay for a while which I did. I had him stretch out his legs in his recliner. I noticed that his feet were curled up towards his body and his knees would not straighten completely out.

I showed him  how to flex his legs explaining he might help some of his pain by this exercise. As soon as I said this off he went into drift land. I let him sleep a few minutes and then I woke him up and told him I was going to go home so he could rest. He looked up at me and smiled and waved bye.

All in all it was a good visit. I hate seeing him so groggy but I like not hearing oh my legs, oh the pain, it hurts so bad…………

Double Blessings

lighteningI got a double dose of smiles today from both Al and my own face. I went to see Al during his lunch time. He opened the sack holding his car and he just grinned. He said he was shocked then he said he was happy. Yeah!!!

He told me next that he walked down to the dining room holding on to his wheelchair. He said his pain was almost gone. This new stronger pain patch is working! I don’t care how long it works for right now I am happy.

We got ready to go to the dining room. He stood up and used his wheel chair to go to the bathroom. He still stumbles and almost falls but he did it. He walked all the way to the dining room. He was even quicker in his step.

I was so proud of him and so happy for him I made over him like cooing over a new-born baby. This made him so proud. I can see that the patch doesn’t help his eating or stumbles but my gosh he walked!

I am hoping there are stronger doses when this one becomes immune to his body. I don’t want him to be dependent but let’s face it, he is. He has terrible pains and this is helping. I just had to spread the word that today was a double blessing indeed.

Just Call Me Ms. Detective

English: Half a dozen home-made cookies. Ingre...

English: Half a dozen home-made cookies. Ingredients: butter, flour, white sugar, brown sugar, eggs, vanilla, soda, salt, and chocolate chips. Français : Demie-douzaine de cookies fait-maison. Ingrédients: beurre, farine, sucre en poudre, œufs, vanille, soda, sel et grain de chocolat. (Photo credit: Wikipedia)

My feet are on fire!!!! I have Diabetic Neuropathy. I have been taking so much stuff out of my brother’s room. We are switching rooms and bathrooms. His wheel chair will not be able to get into the hall way to his old bedroom and bathroom.

This is very hard work when there is a lot of walking for me. The nerves in my feet become  fire bugs. I have photos I am going to show you of his stuff and his and my rooms. I am waiting on my son to get here. He is going to help move the beds etc from room to room.

I don’t have proof but I think I put all the pieces together about Al not feeling well. I went out to see him. He was just trying to rise from napping. I asked him some questions while trying to get his shoes on. You know Ms. Detective here. I went to raise his leg so I could put the first shoe on and his legs were so stiff when I moved them they didn’t budge.

I am always amazed at how PD(Parkinson’s Disease) works from the inside of Al’s body. You don’t see the damage it is creating. After getting his shoes on he could not stand. I had to get help. I have to admit this worries me some with him coming home. I am hoping that moving more by going to the Day Program will help grease his body a little and loosen it up. If not, I will have to go to plan C, D or E.

Al had fibbed in my opinion. After I wrote you about him not going out because he was sick I thought instantly to a bag of cookies I had baked and taken to him. The detective in me targeted those cookies. Where were they? Where was the bag? How many have you eaten out of the three dozen I brought you? You know they type of questions……..

His reply was that they were lying on top of the trash can and the housekeeper had just came in to clean and picked them up and tossed them in the big trash can. I asked him why he didn’t say anything to her and he said, ” I don’t know.”

I searched the room upside and  under in and out but nothing. I went to the nurse because at that time I had no solid reason not to believe Al. I told her about the cookie deal and that I had actually seen the housekeeper outside Al’s room only minutes earlier.

She hunted the lady down and with gloved hands dug through the trash. She came back with there were no cookies in the trash but there were empty bags. I interrogated Al once again.

I made up a little story to get the truth out. I told him that they may have to take him to the doctor and do tests to see why his stomach is so sore and sick. I said,”If you tell me the truth that you ate all those cookies it will end the search and concerns. You won’t have to go to the doctor then.”

He said “Well maybe I did eat them in the past two days, I don’t really know.” The nurse was standing there and she looked at Al and said,” You made me dig through that trash when you are sitting here lying?” I shot her a dirty look.

I know lying is wrong. I also know that too many professionals have said Al is eating left and right because he is so depressed. So on one hand I hated to bitch at him because of is over eating due to depression.  On the other hand lying is lying.

I explained to him that lying is wrong. I told him to always tell me the truth no matter what, I will understand. He said, “Sorry sis, you make good cookies.”

Oh brother, use that soft crap on me now will you I was thinking. I had him apologize to the nurse. He was in bad shape today not only from the cookie party but his body was in so much pain.

I wheeled him down to the dining room but I don’t think he was going to eat or at least not much. He will feel better after he goes, shall we say number 2? Now if the cookies were borrowed or dumped or eaten or given a way and he is still ill tomorrow, I will investigate further on his health. I am pretty sure that the reason Al felt sick and could not go out is too many cookies.

I imagine he ate them between you and me, but I can’t brow beat him when I have no proof. After all look at all his other things that have been five finger lifted since he has been there.

I will be so glad to get him out of there. The depression does affect his ability to remain strong. Seeing and socializing through day care will do him wonders, if I can just get his room and mine done.

Al's room movingAl's room moving 2Al's room moving 3Al's room moving 4my room movingmy room moving 2

A Day With Snow And Al

I went to see Al today since the roads are cleared of snow. Where I live the paths are total slush. It makes driving a bit difficult when you are in nothing but mush.

I took a photo of a cute snowman that some kids built in the neighborhood. I also took some more snow pics, just for my memories when it is summer; all hot and humid.

Al was in his wheelchair trying real hard to make it go. The facility is letting him use a different one that is much lighter in weight and a tad bigger, but Al was not able to make his legs do what he wanted.

I know the rules. Let Al do his own pushing. Back off woman! But for today, when I saw the tears because he was stuck in his room and thought he may not get any lunch, I cheated. I had baked him some cookies but he seemed to have no interest in these. It may because he was so concentrated on making the wheels go round and round.

I placed the cookie bag on his bed, took my coat off and whizzed him out of his room. Reaching the dining room and getting him positioned correctly, I waited with him until his food tray arrived.

Al now is using a divided plate with three sections. Also straws have been added in with strict supervision because of not being able to release the straw from his lips. He struggles very much with lifting those cups to his mouth.

His plate arrived and I didn’t say anything when I saw one divider had about three-fourths cup of lasagna. The server poured his routine water, apple juice and hot chocolate. Al looked up at the lady and asked, “Have I been bad?”

The lady laughs and says,”No why?”

“Because I don’t have any food”. Alright Al said it first, so I gave my two cents. ” Don’t you think they skimmed a little on  his meal? I could eat that in three bites. Couldn’t he have a vegetable of some kind to go along with this?”

She replies,”He gets tapioca pudding too”. I pushed a little more making my case and found out spinach and lasagna didn’t sound good to Al, so I looked around at other people eating and saw they had garlic bread. In the end Al got a slice of garlic bread added. His plate looked at least more balanced now.

His tremors were in double speed today and he could neither cut his food and no matter how hard he tried to get that spoon to his mouth, it wasn’t working. I asked him, “Do you want some help bud?” and he nodded yes.

I basically fed him his lunch and he ate the pudding by himself. I helped a little with the lifting of cups but he did the drinking and finally the pain pill must have kicked in because he was able to drink by himself. All through the meal he kept repeating himself. “Oh my legs hurts, oh my legs hurts”.

After lunch was over I pushed him back to his room and within minutes the lady came to take him to his outing. She had commented that they were going to his favorite store where there is coca cola but changed her mind when she saw how difficult of time Al was having. I think they ended up going to the day program for his time out today.

I am glad because his friends are there and he will get his bottle of diet coke. Maybe this will help ease his mind about his pain, even for a couple of hours would be a blessing to me.

Here are the photos I captured on my route and with Al.

snowmanblue skiesclouds and snowal eating

A Visit With Al Today

free-write-friday-writing-prompt bird in winterBefore I went to see Al today, I spent yesterday sleeping off the unanswered questions and researching the internet for help. Some of you have provided me with links which I looked at and have saved. Tomorrow is Monday, and a holiday. I will do my best to get some new roads to look at for Al.

I did discover by going to the State of Indiana Health Boards that I was able to take a look at the scores and test results from the last State Inspection. It had been created in January of 2011 I believe. It showed me what I suspected. They ranked in below average compared to other places.

The worst targets for getting written up were lack of interaction with residents. Too few staff was another siting. Not enough nurses. Residents left in their rooms with no encouragement to partake in activities. Pills being given more often than not and some over-dosing accidents were stated.

The first words that caught my attention though were the ones that said, residents left alone with no interaction, causing anxieties and depression.

This really stood out to me as I notice more and more that Al seems depressed, quiet and down in the dumps. When I went to see him today it was what I would call a below average visit. He was quiet at first and then he blurted out,” I am trying to be good Terry. I am trying to stay out-of-the-way so the staff won’t get mad at me. Do you think they will like me better if I am good”?

The poor guy. I am sorry but this made me feel so bad. I can not blame every single thing on Al’s Parkinson’s Disease, just as I can not blame it all on the staff. I can however, blame the ball. The ball that goes round and round starting with the Administrator and swinging down to the CNA’s. It is no one’s fault and yet it is everyone’s issue.

Al does need to watch what he says to residents. He does need to be careful of becoming angry. On the flip side, is he doing these things on purpose? I choose to believe no. He has always had issues of this and that, but he has always been a social butterfly, trying his best to get people to notice him.

Here at home on Christmas Day I observed more than once Al trying so hard by repeating himself to others what he wanted to say. He was ignored. When Al gets ignored I get hurt. I can’t help it. I know he is what we would not call normal, but should we shut him out, shut him in a room because he wants to know someone loves and cares about him? Don’t we want the same thing from others? Why else do we marry or get involved in relationships? I don’t think it is because we want to be alone.

I was very honest and open with Al. I told him I did not know the outcome of what was going to happen. I said” I am so glad that you are trying your hardest, and Al, I know that most of the time you do not mean to be rude to others. I know you want these people to like you and it all just seems so big when you are having your pain too”.

I went on to explain that tomorrow I am gong to start making some calls. I explained that I want him to be happy and I will do my best. I asked him if he had a choice of coming home and going to a group home which would he prefer. He said he wanted to stay where he was. He said he didn’t want to come home because we could never find help to stay, so he chose the group home.

He was very calm today but very sad-faced. I know he feels so bad at the thought that this place does not want him there. I took in one of his antique cars and asked him if he wanted me to push him in the wheel chair down to  his buddies room to show it to him. I ended up pushing him for a ride all around the facility and then we went to his friend’s room. They spoke a few minutes talking about the car and then church was getting ready to start.

His buddy asked him if he wanted to go. Letting him know that he himself was going. Al started to cry and said, “I can’t. It just makes me cry. I am too emotional”. The guy looked at him and then me and I just told his friend that we were heading back to his room now.

I planned on staying longer but I guess the ride wore him out. He was ready to lay down and rest.

Buddy, I am going to do the best darn job I can to help you fit into a place that you will enjoy and feel comfortable. You deserve it bud, I love you.

Care Plan Meeting

Well it is over. The care plan meeting. It was a little odd because for the first time, I had the floor. They wanted to hear what I had to say. They asked questions. They didn’t end the meeting until every thing was spread out on the table. I felt like we clicked like peanut butter and jelly.

I voiced all of my thoughts I had written down. Changes were made according to what they have observed so far. I can deal with the changes because it will keep Al safer. There will be no more straws. He struggles to drink out of them but the issue is he can’t seem to release the grip on the straw. We are all concerned that he will suck the straw down his throat.

The second change is he will be moved to the second dining room. He is struggling to cut his food and he is taking too big of bites. With the independence he has of ordering his meals, he is eating too much and has gained eleven pounds. This is unacceptable for a heart patient and with his weakening mobility. In the second dining room he will be assisted in making better food choices. He will be observed more closely on choking and bite size.

He was able to keep his walker, but it is to be used to go into his bathroom or to the edge of his room door and then he is to ride in his wheel chair. We made notations that he needs his toenails cut. I made it quite clear that he has to have baby oil lightly rubbed into his hair and face daily. It was just awful to see the crusty formation of cradle crap. This can be controlled by the baby oil, but before, no one was listening.

Al was worried so bad about this meeting. Some one must have told him about it. I told him it was no big deal. It was just a get together to make his life as pain-free as possible. He seemed to lighten up a little.

I am sure he will miss his dining buddy, but I told him the two of them can visit after eating and also visit each others rooms. I explained that you could never have enough friends and now he was going to be able to make even more.

All in all, I walked a way satisfied and happy. Al was very chatty during his lunch. He said hi to everyone that walked by. I am sure everyone on the side that he lives, all know his name. The pain medication was working today. He said his legs did not hurt as bad.

The nurse said it may take a few days for the increase to kick in, and I can see that she was right. I thank-you for the prayers and God for letting me have a good visit with Al and the meeting. I know God was right there in the middle watching it all unfold.al


Who Has The Answers

Nursing Home



Some of you may think I am the most difficult person to get a long with in the nursing home with Al‘s staff. I promise you I am very fair. I have never screamed or sworn. Today I could have though.


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.



I Exploded Then Froze

Yesterday, I took one of my exercise classes and then because it was half off days at the local Dairy Queen, I went and bought Al and my meal and surprised him with junk food. When I went there, he was lying in the therapy room. Although there is no more therapy, Al believes that therapy will cure him, so the staff lets him lie on the therapy bed.

I told him that I had brought him a surprise lunch, but he didn’t seem eager to see it or eat. With some convincing we did go to lunch in the dining room. After eating I told him I would be back. I explained I had to take care of his bill.

I went to the office and found as I usually do each month, extra charges they have tacked on. We argued and discussed. In the end, his amount he owed was higher than the amount of disability that he gets. I was ready to pull my hair out.

I feel like these places are out to drain your pockets. I take everything for Al’s bathing that a king could possibly want. Instead of looking through one of the three drawers of his bathing tub, they go get something out of their own inventory and charge it to Al. I requested when I placed him there that there was to be no more therapy, as it had been determined that therapy was no longer helping his legs, but they did what they wanted and we have to pay the 20%. The next month I saw more therapy bills and threw a fit, but they ignored. Now this month again.

On top of the bad episodes in there, I found out that earlier therapy charges had been placed on Al from back in November. His current bill was showing I was late paying it by almost two hundred dollars. Although I had receipts showing Paid in Full, they had every excuse that led back to the same thing. We are the ones caring for Al.

I was so sick and tired of this that I exploded when I once again found out the barber had cut Al’s hair again. He has been in this new home for two months and has had three hair cuts at 10.75 each. Now you may be saying that isn’t a big deal, but it is.

Al is only allowed to have fifty dollars to his name in this place. They charge these hair cuts to his bank account within the facility. The other left over money is for him to spend on his desires, plus he likes to go on the van rides when he is lucky enough to get picked. They eat out and he has to pay for his own meal.

When February comes Al will start the new program that was funded in Indiana. A company will bring a van to him equipped with wheelchairs and ramps and he will get to get outside of these four walls twice a week. The catch is the funding is sort of for Al and sort of not. The funding pays for the gas and insurance of the van plus the pay of the company taking Al out. Al has to pay for each meal or anything he may want to buy. With forty dollars being left for him, I am forced to either tell him he can not go, or foot the bills myself.

I wish there was a magic fairy out there that was replenishing this fund so that he could go each time. I am struggling to find a job since he is no longer living here. So far I have had no luck. I pay for the gas that takes me to see him. I pay for his soda that although he doesn’t need, he has had one each night at bedtime for as long as I have known him.

Should I tell him he can’t have his soda anymore? I can’t do that, so I buy all of his pop too. Now I have to either add to his account so  he can go to these bi-weekly outings, which I think are good for him. Plus the fact that the funding program is to get disabled adults out of the nursing homes a couple of days a week. If I don’t add money myself they will not come get him any longer.

So when the office says we take care of him, so if you have to dip into his emergency funds to pay his bill here, we are sorry. I exploded yesterday. I really did! I told them that if they did one more therapy for Al without my permission, I was not paying it on Al’s behalf. I told them you can not do anything for Al without my prior permission unless it is life saving or from a fall. I told them no more hair cuts except every six weeks, and if they did, it was at their loss.

I was crying so hard and shaking from two months of watching them drain Al’s monies and then going into the funds that Medicaid allows him to keep which isn’t much considering Al’s young age.

As I left the meeting I went to the bathroom and cleaned myself up. I didn’t want Al to see me this way. He stresses over money anyways. The meeting lasted too long and his noon chat was over. I saw him in the middle of the dining room crying. I stood back in the shadows and watched the movie scene playing out.

Al’s legs were not working. He was sitting on the seat of his walker, and through tears I could hear him asking kitchen staff and CNA’s walking by for a push down to his room. His room is a long ways from the dining room considering his legs are in constant pain.

I actually observed staff ignoring his pleas, or saying when they had time. Al was sitting on the seat but it isn’t stable seating. It is the small seat on those portable walkers? Know which ones I am talking about? His tears were breaking my heart and yet the calmness that I had mustered up was again roaring its  head like a lion. I listened and watched for about three more minutes, then I walked up to Al.

I asked him what was going on. Why are you crying? He explains his legs are throbbing and won’t move and he just wants to go back to his room. I asked him if he wanted me to get his wheel chair and he said yes. I went down the hall and got it and brought it back. While I was helping get him into it, no one offered their help. A 240 pound man I was trying to transfer from a portable seat to a stable wheel chair and they all walked by. I asked him, why didn’t you ask someone for help bud? He says through his tears, I did, but no one was helping.

I pushed him back to his room and helped him to lie down. My brain was fuming as I smiled at Al and told him I loved him. I told him I would be back on Thursday and he looked up at me and said good.

I left exhausted. Worn out from the arguing over bills that I have begged in the past two months to be informed of before doing. Worn from watching the scene of no one coming to his help. I am not mean, not at all. I understand the nursing homes as I have worked in them for many years. But, when someone is unstable in a seat you work with that situation immediately, not pass it off to someone else, especially the family member me.

I came home and felt awful. By six pm my body was freezing. I ate my supper but kept getting colder. My sugars were good and so it wasn’t that. The colder I got the more my feet froze.I felt like my soul was being lifted out of a cold body. ALVIN CHRISTMAS 12 I took a rice bag that I heated in the microwave and took it to bed. I placed the heated bag over a towel then on my feet and was laying in flannel sheets. It took some time but I finally started to warm up. By 7:30 I was asleep and never woke up until 7am this morning.

Now I am getting ready to go to a class and need to eat breakfast. I pray that my day and Al’s goes alright. I am not going out there today.

Support Hug Please

al and meToday I started one of my classes and it was so good to talk to other humans that were not ill. After it was over I went to see Al. I needed to take him some pants that I had found plus visit.

The Social Services found me and did a check on Al’s room. He had four cars there that were collectibles and of value. She made me take them home. It broke my heart because I knew that he enjoyed looking at them. She and I finished and then I was getting ready to go back down to sit with him while he finished his lunch.

I saw Al coming down the hall all bent over but using his walker. He was frustrated and mumbling but I could hear the wicked things coming out of his mouth. I went to meet him and the first thing he was upset about was the wet floors and the wet floor sign. He ranted and raved about them being in his way. He said they didn’t care if he fell or not.

The real problem I discovered was that he had to go potty. He was so afraid that he was going to have an accident. I told him he may want to consider using the bathroom before he went to a meal, and he said he did. He was also concerned that if he wet himself, people would laugh. I explained about him wearing his brief and that no one would see anything, and he could just change briefs.

He was mad and irritated. He cried all the way back down to the dining room. He and I saw a lady beginning to take his meal and I sort of yelled a head letting her know he was coming back to finish it. She stopped and did not take it. He cried some more and tried to claim she wanted to throw his meal a way and wanted him to starve. I tried talking to him, saying we saved it and then an activities director butted in and told Al,” You should have said something that you were coming back”. This made Al cry even harder and he said he did everything wrong. I explained to the director that with Al’s mentality, he only thinks for the moment. I said that thinking a head to the next fifteen or twenty minutes is not in his thinking process. She came back with a remark, “Well, then we can’t be responsible for taking his food and throwing it away”.

I said nicely and with a small smile,” I just told you his mentality will not let him say that. You are making him feel bad, now please stop “. She grinned at me and said,”Well, there is nothing we can do”. and I said, “Stop talking right now”.

Al was a mess. He was crying, agitated, mad. I could not calm him down. Then the social services lady came up and told Al that she made me take his four cars home. The talking stopped with Al but more tears fell, and these were gentle tears. I couldn’t take it. I know they have rules but I could not take it.

What little bit of gratification I got this morning was wiped out. I wanted to comfort Al but instead I told him I would see him later and left like a big coward. I didn’t want to break down in tears right there in front of him. I was afraid he would think I was taking his side and then more war would break out between the facility and him.

I hate it that he can’t have hardly anything else in his room. Just petty things. The housekeeping even threw a way an open box of chocolate covered cherries I had bought him for Christmas.

I can’t take it, I just can’t take it. I can not buy him anything he wishes anymore because they took all of his money. I sit here helpless and feel beat up. It wouldn’t do any good to buy him anything anyways, he could not have it.

What a coward I was by leaving. I had no choice but to come home and write to you, my friends. I want to protect him like from everything that hurts him, but I can not. I found out that the doctor did increase his pain meds and this will start tonight at bedtime. I am sorry, but I am hoping that the new dosage increase will somehow make him forget what he thinks he is losing.

I hate it because the Parkinson’s is changing Al’s personality from a gently smiley man to a grumpy man who barks at anyone. What can I do??? I am so frustrated. I just hate this PD so very very much