Tag Archives: nursing home

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

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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. Amencandle-animated.gif.

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A Busy Week

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English: Yard sale on Green Street in .

It has been a busy week. The Ombudsman and I finally made a connection by phone. She was to go to the facility last Friday. She told me to sit tight until she got a hold of me. I have heard nothing as of yet.

I am meeting with the State people this Thursday. Al‘s budget has been set. Now he is going to ask me what I need help with for Al’s care and then he will go to the Day Program Director and meet with her on the same day. The Dept. will tell them what it cost for transportation, Day Program Services, and they will take the budget and make it fit for both of us.

There are also going to be between 30-50 hours that are budgeted too for his care here at home. I have had to choose businesses that will help me to get what Al needs. So it is looking real good at this point.

The State said they want Al home by June 1st. It may not be exactly on that day, but it will be real close.

Al fell the day before yesterday again. The next day he was not feeling well. He refused his meals but today when I went to see him, he felt better, but he was complaining of a lot of pain in his leg.

The facility wants him to go to exercise class they offer, but every time Al goes  he complains for a day or two of great pain. I don’t know if this class hurts him or helps him in the end. I just hate having his doses upped every time we turn around.

He gained one pound last week from the seven pound weight loss he had. I am anxious to see what he does this week. He has big red rashes on his skin where the pain patch is so powerful that it leaves like a burn mark on his skin. Then he scratches it as it tries to heal. It looks nasty but I am not going to worry as of right now it is scabbed over. Every three days they switch his pain patch to a different spot and also the new antidepressant patch he is wearing.

I am also getting ready for a yard sale this Friday. The money is nice but doing the prep work is not fun at all. My living room is a mess right now. I will be glad when the sale is over. Back to tidy tidy for me. I always hated messes. Guess I will never change.

I finally got Al’s scooter moved from his room out to the shed. He says he doesn’t want to ride it anymore. I have to wonder if he is strong enough to even run it, although it is battery operated, it still has some umph to it. He leans so bad I am afraid he will wreck and hurt himself. I am not going to get rid of it for at least now.

You never know, he may come home and perk up from being here. Maybe some things will change and I will see more smiles, or maybe I am just hoping. But either way, they are too expensive to just sell so easily.

Tomorrow I am going to work more on the yard sale prep work, and call the doctor to start getting the list of things started that Medicare and Medicaid will pay. I know that I need a hospital bed. I am so hoping that one of these two programs will pay for an XL commode. I think I can get bed pads, and briefs through RX. If you think of something I haven’t let me know. I want the better part of it here when Al gets here.

My son is going to install a shower grab bar in Al’s bathroom. I have changed the ceiling light in his bathroom also so it is much brighter. I have all  his summer clothes put in his drawers and the winter clothes out. I have some hospital gowns too. He may not want them now, but they may come in handy later on.

I am excited and nervous about him coming home, but in the end, it will be me that spends quality time with him instead of the nursing home. I think with all the hours of help that are being provided, and the fact he will go to Day Program M-F I will be alright.

Like I said, it has been a busy week. Well, I better get back to work because it is almost time for supper. I cooked two chicken breast and shredded it. I boiled some eggs just now. They are cooling, and then I am having steamed broccoli and a chicken salad sandwich for supper tonight. The weather is 80 degrees today. The windows are open. Fresh air is finding its way of clearing stale winter air out. The sun is shining. Al is coming home, and life is good for today.

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I Can’t Even Think of a Title For This

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Blue_candleI have been stressed out today. I know, I shouldn’t be this way, but it was just one of those nasty days from outer space. The bad thing is nothing is so major that I am going to have death knocking at my door.

It is all the little pieces of strings that attach themselves to me as I walk upon this land. To start off I checked the mail on the way to go see Al. There it was, that bill that the collection agency called me about. Oh no, it is for real.

There was nothing I could do at that moment. I was on the road. Going in to see Al was a disaster in itself. Al was crying and seemed so depressed when I got there. I wanted to turn around and run but thought to myself,coward.

While eating he was leaning forward so far that food kept falling back out of his mouth. He could barely hold his head upright to eat. Then he would get teary-eyed again because he was frustrated. Then his silverware started playing songs on his plate as his tremors decided to have a party during meal time. That made him cry more.

There was a part of me that wanted to leave, because I get so sucked up in his emotions. Another part of me wanted to pick him up and rock him, and the other part of me tried to be the big sister and calm things over.

Finally the truth surfaced. Sunday is Mother’s Day and the 13th, just a few days later is Mom’s birthday. Al loved Mom so much. He has always struggled with her death. I asked him if he would like me to pick him up and the two of us could go place flowers on Mom’s grave. That didn’t go over at all. Then he wailed. Tears and anything liquid that could run did. It took two nurses and me to calm him down.

I wanted to kick myself in the rear. Why did I ask him that? Darn Terry. The truth was I thought it may help him feel closer to her but that idea backfired. I stayed a couple of hours and then I told him I loved him, and would bring him back lunch, snacks and soda when I returned on Sunday.

I went to meet a lady who sold me six nice starter plants of mint and orange mint. They looked really healthy. Next I paid a visit to the collection agency with bill in hand. I was just sure that the medical billing company had not sent  his bill to the proper insurance company.

But that wasn’t the case at all. In fact it was worse. This bill was from 12/2011. I had just been working these past two weeks on Al’s inventory and I knew without a doubt there was no bill I paid for over one thousand dollars.

I asked the lady to get a hold of the company and she said she would get an itemized bill for me. I had also tried calling this company twice while visiting Al but only got those stupid leave a message recordings, and of course they never called me back.

The bad thing about it all now is the time limit is past. According to her you only have one year to declare any changes to address, insurance etc. So by now being almost a year and a half later, no one, not even the government, she said, will go back and pay.

I was sick at heart. Here I am trying to find a way to pay this huge bill the nursing home wants. By the way, I don’t know if any of you keep tabs on the web page link for Al’s fundraiser, but we now have a total of $335.00. Many of you have helped and I so appreciate it. I have emailed and or made comments on the comment page about my deepest thanks. Here is the link if anyone would still care to help him. I think I am down to 52 days left. The link is

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

So now I have this big debt and a bill for over a thousand dollars and no one will go back and pick it up. I was sad and frustrated and mad all at the same time. I asked her when she received the bill for collection and she stated a week a go.

I pinpointed that this was way past the year dead line and why did the company wait so long? Why did they never send me a bill? She said to go home and wait for the new statement to arrive which would be a week.

I came home and went through the file for that month. I saw where Al had been in the hospital. It showed the correct address and it showed where I had paid them. But guess what, no where in that month or following clear up to this day today was there one single bill from this company. Now I was turning in to Al. I once again cried. Now it is up to almost eight thousand minus the help you all have given for the two bills.

I went outside and tried to erase my mind and planted all of the mint.  After that I didn’t feel like cooking so I went to a nearby restaurant and picked up some supper and I can’t believe I did this, I just can’t believe it. I went through the drive-thru and when I went to the window to pay and pick up the food the gal was complaining of having a bad day.

So what did I do? Yep, you guessed it. I rattled on about the bad two days I have been going through and then I just let loose. I started bawling like a big old baby. I bet that gal thought I had a screw loose. I don’t know if she looked a way or at me but I felt an arm on my arm and it brought me a sense of comfort. A human touch is something I miss very much. I could see that while she was on the other side of the window she was showing me compassion. It helped and then I felt embarrassed because I showed weakness. I thanked her and told myself, don’t come back here until you know they have forgotten your face.

When I came home I found out that the Case Worker has Al’s budget. He and I and the Day Program will all be meeting next Thursday. They will now listen to my request for needs for him and they will discuss the cost to have Al at Day Program. This will all be divided up in his budget and then after this  is decided, it will be sent back to the State. He said he hopes to have Al back in his home by June 1. I was excited and called Al and let him know but he was so sunk in Parkinson’s and Mom that he just cried again wanting to come home tonight.

So we had some good news in the middle of the storm, and now I have to hurry and make sure our house is as clean and open for wheelchair before next Thursday’s inspection. Then I have to figure out how in the world to pay these two debts off. It still makes me angry that the medical place waited until after the deadline to file it with a collection agency. It makes me angry that they never sent one single bill. Unless someone knows of a way around this, I figure Al will be deceased before these two debts are paid off. Or he will pay them until his passing and then they will disappear??? I don’t know.

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Wow, What a Day

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animated-candles1.gif

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

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Parkinson's UK balloons

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.

 

 

Chapter 1, Parkinson’s Disease Journey

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English: An IMAX theatre located in the Tennes...

English: An IMAX theatre located in the Tennessee Aquarium at Chattanooga.

You notice something. You can’t quite put your finger on it but you definitely feel it in your gut. Sitting together at the kitchen table you notice a slight movement of his head. The fingers tremble slightly.

Thoughts enter your head. Is he becoming sick? Should I make a doctor’s appointment? It disappears from your view and in your mind. Life goes as planned. I help him pick out his clothes. He gets dressed and I make sure he has brushed his teeth. All is complete and I run him down to the Day Program.

This isn’t any normal day program. This is a place for adults with disabilities to hang out. Al, my brother, has the chance to feel independence. He can hang out with his buddies. He meets new friends.

He learns to play pool and how to get along with others. With him basically being with me all the time I feel it is very good for him to have friends of his own. He learns that he can get free lunches if he earns them. He sweeps the floor after lunch  or maybe he will set the table for the noon meal.

Al loves to hoard his money. His idea of money is to keep what he can and spend it on himself. Spending it on others is not in his plan. I have worked with him for years about gift giving and he did give in to my wishes but not with smiles.

Al experienced so much at his Day Program. He was able to go see a movie at the IMAX Theatre. He was able to go to Tampa and see ballgames. He went to zoos and the planetarium. There was usually a specific activity geared for learning and enjoyment each week.

The city that we lived in was so big. There were many businesses that donated tickets. The main one was the Symphonies. Al was lucky to get to hear some great music during these years.

Every afternoon when I picked him up he chattered non stop about what he did that day. I would give anything to  hear that chatter today. To see the sparkle in his eyes. To see the smiles spreading from cheek to cheek.

Al and I usually visited a flea market on Saturdays. He would beam from ear to ear if he found a coca cola item for sale. Al didn’t care if he had several of the same things at home. His mental challenges only allowed him to understand that here was something for sale with the words coke on it.

I tried to teach him about running out of room and not buying the same thing over and over. We made some progress but even today now that he has ventured into the classic car collections, he still has the same desires but we try to work through them.

We always made a point to go out to eat on Sundays. We usually went for supper for his convenience. Al is very structured in his routine. I could count on a bad day if I tried to change things around. He had to have a nap each day. So on Sundays it was routine to get up and go to church. Go home and get something light for lunch. He would watch his TV programs until 2:30 pm and then it was his nap time.

He would sleep until 5pm and then he was up and ready to go to supper. I was always amazed at how he had an internal alarm clock. He knew when it was time to rise in the mornings or from naps with his own built-in clock.

He loved to go to a restaurant called Dutch Heritage. You have to understand one thing about Al. I started caring for him when he was the age of 51 years old. Because he had disabilities and mental challenges his whole life he wasn’t along so many times when the family went out to eat.

It wasn’t, I hope, that Mom and Dad didn’t want him along. I believe that Al just liked time by himself. He had some on going  issues with his Dad and I think he enjoyed the freedom of making his own decisions when he was alone.

So the Dutch Heritage was a huge buffet type restaurant. At first when we arrived there I got up from my seat to start selecting my food and Al sat there. I asked, “What are you doing bud? Aren’t you coming?”

He replied, “I don’t know what to do. I am scared.”  He started to cry and then it dawned on me he had never been to a buffet before. I sat back down and taught him all about buffet style and after our first visit to the place I never had to teach him again when we returned.

He took so much pride in choosing his own foods. I sit here and smile as I think back to how he would fill his plate. It didn’t matter how many times we visited, he ate in the same order. His food was arranged the same each time. He would get ham, macaroni and cheese, cole slaw and mashed potatoes and one big roll.

He only went up to fill his plate once. I think he always thought that if he went back twice he or I would have to pay a second time. After our meals were eaten, the waitress would always come around and ask what dessert we wished for. Once again Al would look me in the eye with his starry eyes and with big pride beaming from his soul, he would make his own choice.

Always the same though out of all the choices. Cherry pie with ice-cream on top. Oh those Sunday memories I have with him. Seeing him learning and enjoying freedom of choice were some of the best times I ever had.

 

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The Meeting

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Deutsch: Präparat zur Therapie der Parkinson K...

 Parkinson

Sorry friends for not responding back about the meeting. I have done so much walking getting the two bedrooms finished my feet are burning up all the time. It is just going to take time to get back to where they were, I hope.

I went in to see Al during his lunch time. I realized that I am going to need a divided plate for him. I am not sure where I can get a hold of one of these that doesn’t look like a toddler’s set.

He does pretty good eating on one of these. He had Strawberry Ice-cream for dessert. He must have been getting tired from the main course because his tremors were keeping him from enjoying the dessert.

He struggled and the scooping of onto his spoon was hard. He was making a mess so I asked him a couple of times if he wanted me to help him. His answer was no. He could do it himself.

I was telling him that I would need to get a wheelchair here at home and he asked why. I said because you use that and your walker here so I assume you will want both at home. I don’t know how I said it wrong but he got instantly confused. It ended up with him in tears and wanting a schedule of when he would use what here at home.

The lady showed up for his outing so instead of dragging out explanations and seeing more confusion I left. The meeting came next. I took that deep breath and said a prayer and walked in. The three top office people were there.

I first explained the lunch experience to show his lack of comprehension when you are explaining something new to him. I also wanted to prove my point that Al doesn’t use me out of pity. If he did he would have taken the help with the ice-cream.

I went on to explain about the cookie ordeal where he ate all those cookies and no one seemed to notice. I discussed the issues of the nurse on duty and the chaos she caused the day of the nose bleed. I even blabbed about the dirty brief under his bed, the urine stained pad on his recliner along with mashed food in it.

I ended up making my final point by stating I had not brought Al there to be fixed. I told them Parkinson broke Al and we can’t fix it. I explained about how I wanted him to be social here but now the staff didn’t seem to have time for him.

I talked about the instability of Parkinson’s Disease to cause Al to go from good to bad and back several times in one day possibly. The more I talked the more they wrote their own notes. I told them all in all I wanted Al to have calmness during his stay there and for him to feel like he was worthy of speaking to. I told them that how the nurse disciplines her tough love in her own home doesn’t concern my brother in a nursing home.

The Social Services lady persisted with her idea of letting her bring a Psychologist in to see Al. I said absolutely not. I won’t go into the long story of why I refused. This would be another post in its own. I will say that I have had him to five professionals, top-notch and not one has been able to crack that hard shell enabling Al to release all the garbage that has been stored for years.

In fact it turns Al into a wild animal in a cage. It is dangerous and everyone loses in the end. She argued her point about antidepressants and I said that his doctors and I have had Al on almost all of them on the market. They actually turn Al worse. More drooling, worse tremors, it just isn’t good.

He does take one now and has been for a bout a year. I am for helping Al to see things more peacefully. But at the same time he takes so many medications that at this point when you add new ones there are severe side-effects. I have to weigh the pros and cons and right now because of past experiences I had to say no. In fact I had to tell her no three times before she gave it up.

She made me feel like a huge sinner. Well of course I do sin but in this case she made me feel bad for not approving her idea. Once again I explained I want him to continue his wheelchair therapy and his heat therapy. I hope that I made myself clear about his room and the verbal ways that Al deserves to be treated.

I came home and did a little more of the putting odds and ends in the right rooms, but I was tired and my feet hurt so bad. I just ended up going to bed and stayed there all evening. Now here it is almost four in the morning and I am writing this post.

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I Took Your Advice

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ceiling fan

Guess what? My furniture got moved today! I am so happy. Now it is down to the knickknacks sitting all over the living room. I have Al‘s wall hangings done and I have stuffed his closet with extras. My bed is made but I will be sleeping in the living room tonight. My television needs a box now that it is moved.

A technician will be here tomorrow morning. I can’t sleep without my fan and television. Especially in a strange bedroom. I went out this evening and bought a ceiling fan for Al’s new room. He likes to have a fan blowing on him as he sweats so bad.

I also wanted to tell you that I listened to your advice and called a meeting for tomorrow with the Director of Social Services, her assistant and head of Nursing. We will have a nice little chat. I will be explaining Parkinson’s to them and giving a more in-depth description of mentally challenged people. This should all be very interesting. Yes?

I am more upbeat tonight than I have been for a while. The hopes of Al coming home is nearing. I haven’t had the final approval but was told he is eligible. From what I understand he basically needs a level of care determined. Then a case worker will be assigned for him.

Case worker sounds so government to my ears. I hope this is a good thing. She is to be there for him and sort of rock for me also with questions and decisions.

I have been a busy little beaver today and am tired. I couldn’t rest until I told you all about today and the meeting tomorrow.

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I Wished

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Book of Answers

Book of Answers (Photo credit: Caro’s Lines)

My spirit is restless this morning. I was awakened by the phone ringing. It was a company I have been working with in regards to  getting Al  out of the nursing home. Al is restless and unhappy. I don’t remember him being like this when he was here with me.

Not that our home is close to heaven; but I believe Al’s attitude has changed towards life itself. I had called to see why he did not go to a certain program last Thursday on his outing.

No one that I questioned at the facility knew the answers. I should not say this but I am thinking it, so why not go for it? How can a facility work together day after day and yet when a question is surfaced not one person in any of the departments knows the answers.

It just floors me or maybe I am too impatient. I ask and I do not receive. I am so bad at handling the unknown. I move throughout the hours and days like a mechanical doll. In the head sizzling, is the question that you try so hard to patiently wait to get the answers.

I may have Al placed and I have more quiet time here at home, but sometimes I wonder if expecting Al to receive better care because there is more staff than just me at home was such a good idea.

Now I am faced with the challenges of going through the linked chain to get help.  It seems that the priorities that need to be worked with for Al can not be done. The state will not allow the staff to become too closely involved. They can admit him, take all of his money, give him medications, make sure he is encouraged to eat three meals a day etc. But, they can not stop the weight gain, the lack of socializing Al needs and wearing the same clothes day after day. They can’t work on issues Al has unless it is through a physical therapy department.

I am just a rambling on mess. I am to the place that I don’t know how to fix things any longer. Should I toss this whole process as if I am putting a dirty dish cloth in the washer? How far do I go before I have dug up the foundation of this staff?

I finally got my answer this morning through the phone call. Al did not want to go to the day program. He was upset. He always knew that when I said the word outing, it meant fun and hopefully buying a coca cola item. He got angry that he could only take a few dollars with him because he wanted to take out all of his money in case he found a coca cola deal. Well maybe I should add another weight to my shoulders and blame myself for trying to make Al smile. I did take him a lot of places. So now I pronounce my own self guilty.

I get it to a point. We all want to get what we want in life. It is our human nature. The difference is when Al was here I could reason with him. No one seems to be able to reason with Al at the facility. I can’t sit here and blame his new home. Maybe it is the confusion of his Parkinson’s Dementia. Or maybe Al is simply throwing a tantrum.

But I do know that he was looking forward to going to the program because as he said, he was going to get to see all of his old friends. Now through babbling on like a blooming idiot, I have finally keyed in on the point.

Al isn’t recognizing the effects of his behaviors. He was asking me why he didn’t get to go to the activity when he is the one who told staff in anger and hurt that he didn’t want to do anything if he couldn’t have some of his money.

Now I see a child throwing a fit. Should I pounce on Al and let him know this is all  his fault? Let him see that his anger and hurt by not getting what he wanted ruined his own trip? Does he get it, or is it too complex for his thought process?

This is where my mind swirls and before I even had my coffee cooking a way, my mind was already a jumbled hurting confused mess.

You see one of the things I love about myself is I can move forward if I choose to. Now I am in constant state of being on hold. When the professionals don’t have the answers, who does? When they don’t have the answers, who does?

I can’t make any hasty decisions because I am dealing with a delicate unbalanced mind. I don’t want to upset the so-called apple cart. I sat on the bed and thought about it for a while. I then decided to go in and talk to my brother today; but I wanted back-up.

Not for the reason of my safety, but for the professional words to help guide me through the explaining process of what I wanted to say to Al. I called the facility and was told the lady I needed to talk to just stepped into a meeting that would last for 15 minutes.

She was going to give her the message to call me as soon as she stepped out the door. It has now been one hour and ten minutes and still no phone call. Instead of tossing this over my shoulder, flipping on my radio to turn my brain on auto, I will sit here and stress because I can not get the answers. Sounds impatient doesn’t it? I may have to admit that I am a little  this morning. But when you had a tiny puddle of mud in the beginning and after months of digging in it, you now are standing in a pool, I tend to lose that good patience quality.

Some things were just so much easier when he lived here at home. It was his and my decisions. It didn’t include 25 departments and hearing too many I don’t knows. Life was simple, when I look back. All I dealt with then was his sadness and depression. Now it is constantly looked at as how to fix it. This includes many meetings with hope built-in to them and walking out still unsettled. The alternative is to keep giving him more and more medications until he is a zombie in a restless mind and body.

I just wish now at one of my weak moments that Parkinson’s would fall off the face of the earth. I wish that I was asking Al what he wanted to do today. I wish that I had not placed him where money became the object. I just wish. Wow, I am tired all ready and it isn’t even noon yet.

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