Dedication to My Caregiver, Faye

Dedication to My Caregiver, Faye

The caregiver I have is more than a good worker. She is full of love and compassion. She goes above and beyond to try to make him feel special. Thanks to her, he now has a new lamp from The Christmas Story. Today in the mail Al received five new cars. I don’t know how to say thank-you to Faye, except to dedicate this post to her and her kindness. Thank-you Faye.

AlAl 2Al 3Al 4Al's lamp

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Dedication to My Caregiver, Faye

The caregiver I have is more than a good worker. She is full of love and compassion. She goes above and beyond to try to make him feel special. Thanks to her, he now has a new lamp from The Christmas Story. Today in the mail Al received five new cars. I don’t know how to say thank-you to Faye, except to dedicate this post to her and her kindness. Thank-you Faye.

AlAl 2Al 3Al 4Al's lamp

I Was Not Prepared

I didn’t really blog much about Al over the weekend. There wasn’t a lot to say. I took him out for lunch because he wanted to spend the gift that he received from a blogger. After lunch we went to Wal-Mart and he bought a new car. A 1960 Ford Galaxy Star liner sheriff car. Al’s is made to look like a police car but the same body as this photo.

When we came home he took a nap. He remained fairly quiet the rest of the weekend. He refused to come out to the table for meals, instead eating in his room.

Tonight the truth finally came out, and I can tell you I was not prepared for what he said. His words were, ” I have thought about it for a few days and I want to donate my body. I want the doctors to find out what made me this way so no one else has to suffer like me”.

We talked for over an hour. I came to the conclusion that he is very serious. He wants me to hurry and get the arrangements made so he can die.

I sat close to him and put my arms around him. He started crying and then I cried. We held each other until he fell asleep and then I sneaked out of his room to the safety of my computer.


Christmas Gifts For Al in June

carscoca cola carI am so darn excited I can hardly contain myself. I had a visitor here who was having a garage sale tomorrow. I happened to just ask what was going to be in it. He took me to his truck and I discovered these.

I bought them for Al. He will be here in about an hour. I hung the clock so it sits right beside him when he eats his meals. I cleaned up the cars and have them spread out so he will see them when I bring him inside in a little bit.

Oh I feel like I could squeal like a pig, I just can’t wait for him to see them. I bet he is going to smile big.

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

Advice Hour

Français : Une cannette de Coca-Cola italienne...

I can’t seem to lick this problem, so once again, I am coming to you for advice. You have Al

English: Vintage cars from Scottish Extravagan...

who is mentally 10 years old, and physically 57 years old. You also have a stubborn man who is angry when he can not do things for himself, like he used to due to the Parkinson’s Disease.

Now take one regular size bedroom and in this room is his bed, bedside table, recliner, commode, another end table, television shelf stand, and one dresser. On everything that is able to hold anything coca cola and vintage cars sit. Every nook and corner on the floor, closet clothes are being forced to move closer and closer due to his collectibles being stored.

Now that you have pictured this room, the icing on the cake is, the nurses thinks he needs a bigger path to walk in, because he has his walker in his room, and he is considered a high risk fall person. You have me who has used the cars as a bribe in order for me to get to run to Wal-Mart, plus I have a tendency to have spoiled him this year, because of his advanced stages of his illness.

We have a storage shed outside also, that I have packed some of his collectibles up in bags and taken them out there, but they are being squeezed in between shed stored items. He has been telling therapists that I won’t let him have any cars for a while, and he is agitated at me for not letting him get them.

How do I get out of this mess? How do I keep him happy, the nurse happy, and Al safe when walking? I have asked Al if he would consider selling any of his items, in order to make room for new cars,and his answers for years have always been no, these are his!!, and we already have placed shelves up to help too.

The problem is that Al’s mentality only sees that he likes these cars and he wants them, pretty black and white for him. Sometimes I get confused with his mentality, not being sure if this is a throwing fit game, in order to get his own way, or if his mentality is actually not letting  him feel the reasoning that I am explaining to him. I also get concerned, because Al throws fits like an adult and not like a ten year old. I do see this comprehension as a growing problem with Parkinson’s, but I still need to get this issue fixed. It is driving me crazy, him being upset and  crying and me overly explaining. Ideas for me?

Cars, And Christmas Story Lamp

This is the look of the day today, and then the sun would pop out for a bit, and then go hide again. 70 degrees, shorts weather, yipee!!

I had to go get a leaf blower, and I took Al with me as it was one store. He did very well, and we looked at Christmas toys that are already out before Halloween. The one blurry photo is the action figure moving, so I could not help it. In one of the signs you can see where I snapped the information sign stating you need to turn off here if you want to come see me!

We got home, and Al had so many cars piled up on his table by his bed, I could not even squeeze in his drinking glass for over night sips. I told him we needed to remove two of them and find a new spot for them. He instantly started crying and I knew immediately he did not understand. I explained twice more and he did not get it. I am finding this to happen more and more each day. He doesn’t understand what you are saying, he can not comprehend, unless, you say something simple like, supper is ready, period, no more no less.

He cried so much, I went ahead and found a place for two cars in another spot, and  then realized Parkinson’s was back. It had been hiding all day. I hate confusing Al, but sometimes I just have to butt in and make things right. He did get a big kick out of the Christmas stuff they try to sell you for commercialized holidays, and he even found this big window plastic film that you stick up with stickers. It is the leg lamp from Christmas Story. I placed it in his window and with the day light shining on it, it looks like the lamp is lit. He liked that through the tears. Well this day is almost over thank goodness. Hope he is going to get up for supper, because when he is this confused, he just goes to bed for a nap.

What We Think We Know

You have heard the saying before, I am sure, that if you have not experienced it, you don’t know what I am talking about? I think this refers to me last night. Al is slowing down so quickly. I see him struggle to get out of the car or off the couch. Our bodies, when we want to move, we just “get er done”! When Al wants to  move, it takes much time to get the brain to tell the body part what to do, then the brain has to register what the movement is, and then the body tries very hard to do the action. Let me tell you, with great pride and stubbornness, it can be done, but it can take several minutes to make one action complete!

Here is a good example at our home. We go to the grocery store to get the much-needed foods, mainly getting Al’s desires. As I don’t want him to lose anymore weight, I give into his fantasies of his taste buds. I pay for the groceries, and I load them into the car, and I have this done while I am waiting for Al to still get into the front seat. We drive home, and I get out of the car, and unlock the house, and carry in all the groceries, and still wait for Al to get out of the seat.

Can you picture now how long it takes the brain and the body to join together in thought and get moving? The frustrations that he feels, the humilites that follow him when others are present. I truly believe that this is the major reason that Al gets so nervous and stressed out when we are in public. He is overly concerned about what others are saying, although I do believe that most do not pay attention to him, it is Al who pays attention to his own self. He forgets how to use the levers on the scooter and ends up crying, making me wish we would not have went out.

Then you have the other side of the quarter. Al wants to continue to go to outings, and wants to live like he no longer had Parkinson’s. You know within your heart, it is going to not be a happy experience for him, but you can not take a way the desires  he has, just because you know the better part of the outcome.

I took Al to a car show this past weekend, and he did fairly well. We took his scooter, and it was held under the open skies, so there were no boundaries for him to bump into. I have had to change myself, in the way that I was brought up. Don’t talk to strangers, don’t interrupt another person’s conversation. Don’t be a loud mouth. Use your manners we taught you. When I stuck the key in to give power to the scooter, I also gave power to let Al be Al. He smiled immediately, for one he was going to look at antique cars but the most important thing, I believe he smiled about was freedom.

This freedom gave him power, power that he used to have to make decisions for himself. He went to each car, and looked it over. Every single person he saw, he scooted his way to them, and started carrying on conversations as if he and they were old-time buddies. He was having a grand time. It was not a huge car show, so I stayed in the background with people who I knew, and just kept both eyes on him.

It warmed my heart, and I even over looked the people who wondered what he was all about and who was this person coming their way. He finally did come back, his lips were quivering, his body filled with so much sweat from the work of making the scooter go. This was a lot of decisions for him. Who was he going to talk to , what was he going to say, which way was he going to make the scooter go.

He was very tired and he wanted to go home. He could not get out of the scooter because he had used up all of his energy on his journey of independence. He needed help to also get into the car, but in his eyes, and also mine, it was worth every second to see him having time to be who he used to be.

This is what you lose when you gain Parkinson’s. A huge part of your personality and what you represent here on earth as a whole.  The whole life of a Parkinson’s patient turns into a live nightmare, as you continue to try to live and breathe air.

Last night before we retired to our bedrooms, I saw him struggling so hard to get off of the couch, that I walked over and for one of those few times, I did offer to help him get up. He had been struggling long enough, that he didn’t hesitate my offer. When he finally worked his body to the edge of the couch, he held out his hand for me to help get him in the standing position. I gave him a gently tug, and he came up.

Without me living what he is living, I can not fully understand the body he lives in, and I automatically let loose of him once he was standing. I only think I know what he is going through, other wise, I would not have let go, and for this mistake he didn’t stop moving, he tumbled on over, once I stood him up. I felt so bad for my mistake and kicked my own butt for not thinking. I caught him before he hit the floor, and I apologized to him for having the strength of THE HULK, hoping to get a laugh or smile out of him, but it didn’t work. When I looked into his eyes, I saw fear, fear of being out of control and fear of wondering where he was going to be landing.

I am trying harder now to realize I don’t know Parkinson’s. I only google it, listen to doctor’s words, and watch Al. I am not going to beat myself up for this lack of thought process, but I did learn to be more cautious, and realize I can not know what others are living or thinking, until I have lived it myself also.

We reach our hearts out

And offer our help to

Be a friend and lend a hand

Only finding out that we are

Nothing but grains of sand

In this vast world and land

But we must be loving

And children of God

We continue our work

To  show that we care

To allow them to live and be willing to dare

To live and to love and to be

Course of impulses between the brain and the body

Course of impulses between the brain and the body (Photo credit: Wikipedia)

who they are

We can not dismiss them as the weak and the sick

For it could be us, walking on the end of that stick.