Never Again, If I Can Help It


Racing driver Nigel Mansell driving in the 199...

Racing driver Nigel Mansell driving in the 1993 CART IndyCar World Series (Photo credit: Wikipedia)

Well today was real interesting and I have learned one thing for sure. I did not have anyone to do respite care for me today, and I had to drop by the bank, stop and get gas, go get salt for the softener, go to the pharmacy and pick up my medications, and go to Wal-Mart to get Al briefs and bed pads,and a few groceries to tide us over for a few days.

I knew it was going to be a challenge, so I told him that we would eat lunch at his favorite place and that he could get a car at the store. This seemed to work, and our trip for the day went well until we got to Wal-Mart.

When we first went inside the doors, we got Al a hair cut, and then we went to the eye vision section, because with Al’s Parkinson’s, his head his always facing down, so therefore his glasses slide.

He looks better with his hair cut, and they adjusted his glasses a little, but I purchased him one of those thingys that hooks onto the sides of the glasses, so they can not slide? Ya, one of those, bright red like coca cola. They seem to be helping him so far.

By this time, even though he was getting a car, he was tired, but I had to keep going as we needed his specialty items plus his toothpaste, his car, and a few groceries and the odds and ends that we throw in the cart that are not on the list.

He was slowing down on the scooter and bent more forward. I have to blame him for part of the length of time we were in the store as it took him forever to pick out the exact car that he wanted. He had to inspect them each. It was sort of funny to watch from behind him. He is in the scooter and he is bent over as far as he can be without falling into the shelves, eyeballing each one. I bet we were in the toy section a half an hour! He got his choice, and we moved on.

I hurried as much as I could but not too fast, because he his very slow on the scooter. We get up to the cashier and get everything paid for. I swear each time I go to this store, the prices raise 10% from the time before.

We get done and I have my cart and he is in the scooter and we are outside of the doors now. He is crying because he is tired and he is hurting, and I try to pay attention to him, but I need to watch the traffic more importantly, so I took my eyes off of Al, and looked at the cars zooming by. Do they realize there is a pedestrian walk way there? Do they know that they are supposed to stop and let us go through? Only three-fourths realize this and the others speed by.

All of a sudden I am thrown into the speedway of cars coming and going. I am being pushed into my cart and pinned from behind as Al can not control the cart anymore and he is pushing me farther and father into traffic.

I am screaming ouch, you are hurting me! My leg, my ankle, stop the scooter! Stop the scooter, take your hands off of the handles!!!! Cars are starting to honk and I am still being pushed into the midway. I can not get out of my position, being trapped between his scooter and my cart, that I must have been clinging to for dear life. If I would have been thinking I would have let go of my cart, but my conscience knew that my purse was in there, and I wasn’t giving up my purse.

I must be screaming loud enough from my own banged up legs and ankles because finally someone came behind Al and lassoed that cart like a wild stallion. He grabbed Al’s hands off the steering column and turned the animal off. I started crying and I don’t know why.  Probably fear and from some pain. I wailed like a big old baby, but by then, I think the crying was from built up stress for weeks on end. I became a big old jelly ball. I just lost it right there with the cars still going back and forth. Some cars did stop and got out to see if I was alright, and I looked down at myself and did not see any blood, just big red gashes and scrapes.

My mind snaps to it, and I get my cart out-of-the-way, and Al starts to move and then directly in the middle of the speed trap, he quits. His brain is no longer working from being too tired and the realization maybe of what just went down. I did leave the cart at the edge, grabbed my purse and went over and tried to get Al and the cart going, but Al’s brain just wasn’t registering.

Finally a man came by, a guardian angel, and pushed Al’s cart in maybe a neutral position clear over to our car, then he just sat there. I let him rest, cursing under my breath, because I wanted him to magically get up and help load these bags, but I said nothing. I went about placing all the bags in the car, and then helped Al get off of the cart and get him in and buckled up.

I think from the time we left Wal-Mart parking lot until we drove the three miles home, I must have smoked three cigarettes, and I was telling myself, this is it, it is over. No more going out with Al on errand day. I will not go unless I have a caregiver so he can stay at home. He can go when we go out to eat, one place, one evening, then home.

Now to check out my sore legs and do the dishes from supper. What a day! I am pooped and ready for bed and it is only 7:30 in the evening. Al will take his last medications at 11pm and he won’t be in bed until around 12:30am, if I am lucky.

Anything Else?


Close up of a bright red mask (IMG_2815a)

It was a beautiful Sunday, God’s day of rest. Blue skies, a chill in the air. No heat on, but the electric fireplace, and definitely no air conditioning turned on. Windows all shut, and I hate this, because I love fresh air.

We had no plans, since I worked so hard yesterday, cleaning the house. I was going to laze and Al was watching television, when my son came down and invited us both to go to Fort Wayne to a car show, that just happened to be at the restaurant, The Quick Lube. Al loves that place. I posted pics of it a few months back. This place is all about cars and women standing near cars. Most of the women were at the back though, by the male restroom door, go figure. There are also real miniature race cars hanging from the ceilings. Al thinks this is cooler than the cat’s meow!

Although, he has great struggles with moving, his brain was anxious to get his shoes and socks and jacket on and said yes! I want to go, can we go nice sister? Get that, trying to butter me up by calling me nice. LOL I said alright, I know you would love it, so let’s go and save being lazy for another day.

We followed them up there and went to the restaurant parking lot, but there was no car show going on. We parked and my son made some phone calls and discovered it didn’t start until 4pm. He wanted to know what we should do since it was only 1:30. I suggested eating, as Al needs to be on his medication schedule, and they agreed.

We all got out and Al was slow but we all made it. Al just used his cane to go in, as the scooter would not be welcome in this place. As soon as we go in, Al has to use the mens room, and since I had to use the lady’s room, I walked back with him. I went and came out, and Al did not. I waited and waited, still nothing. I kept wondering to myself, should I ask a nice guy going in or coming out to check on him? Men came and went, but no Al.

Slowly, I cracked open the door, and yelled his name, and he answered. Well, he is still standing, I think to myself. I ask him  if he is alright and he says yes, that he is hurrying. Another ten minutes goes by. My son and his family have been seated now about fifteen minutes, and I am hoping they have taken the initiative to go ahead and order.

Finally, Al comes out, and he is just beaming ear to ear. I don’t know what could be so exciting about peeing, and I was not going to ask. I told him to let’s go, the others are waiting. We get to the main entrance where waiters and staffers are heavily trafficking, and all of a sudden, Al stops dead in his tracks. I think, oh no, his legs are frozen again. He says, Terry, guess what, and I look at him still smiling and slowly, with hesitation say what. He says I did it! I say you did what. He says I went poop and he shows me a diagram with his hands that it was definitely a large. He says this  in front of everyone, you don’t need to give me that poop medicine tonight, because I went a whole bunch.

I died, right there I died. I didn’t have to check myself in my compact mirror, I knew my face was burning hot. People around started snickering and laughing out loud. One kid I noticed plugged his nose and was laughing. I took a nice deep breath and smiling at Al, I stated calmly, that is wonderful bub, now let’s go to our seats.

We ordered and I tried not to look at the few tables near us that overheard Al’s exciting story, and our food finally came and we dug in. I never let on to my son what had happened, I just wanted to forget it.

When we got up to leave and everyone was outside, Al’s legs froze. No moving, no marching, no baby steps, no mother may I. He and I struggled for about fifteen minutes, and we were not being very successful. He would take a shuffle, then stop, then try again, then stop.

The car looked like it was ten miles away, and Al was bent over in half, telling me he could not stand up much longer. I begged him to keep standing telling him how cold and hard the cement was. Standing in the background was my son and his girlfriend,  just watching…..

I yelled over at my son and shook my head no, but he seemed like he didn’t get the picture, so I yelled, I need help now!! He walks over and says what, and I say please, please grab his other arm to help me to keep his balance. He says that I need to go get the car, and inside I am thinking uh yep, but how am I going to get it and leave him here with just you. I looked at him and Al and I said to my son, do you think you can hold him up while I run and get the car? I don’t think I waited for an answer, because all I remember is running, ya me run, huffing and puffing at my middle-aged speed. I got the car and raced over to where he was and I mentioned that I needed a wheelchair. My son says you don’t need no stupid wheelchair. I say yes we do, because by the time I get the scooter out of the trunk and all put together, he will have fallen to the ground. The cane is useless now. He is too weak for it.

I get him in the car, and then I light up a cigarette and thank God for helping Al to stand while I got the car. They wanted to go to the Halloween store, and so we followed them there, and this time, I got the scooter out and he rode it through the store, laughing at all the spooky items. After this store, they knew of one more, so I broke down the scooter by myself, and put it in the trunk,, and I had loaded Al already and we went to the other spooky store.

I unload the scooter again by myself, and put it together, and get Al out of the car and into the seat. We go in, and get about a fourth of the way through the store, and I saw this beautiful red, feathery, glitter face mask and I wanted to take a photo shot of it so I could show all of you its beauty. I handed my camera to my daughter-in-law, and she is turning the camera in the right position, and she drops it. It is in slow motion in my mind,as I am standing there watching it fall to the cement floor, lens first. Pieces break and scatter on the floor. My son tries to fix it but it can not be fixed. He was embarrassed I think, and she said that she didn’t mean to do it. I placed the camera back in my purse, and now I do not have a camera. I don’t know if they are going to try to get it fixed, or if I have to go buy a new camera,or maybe my son will try to fix it, I  just don’t know. I should not feel this way, but I felt like I lost one of my close friends.

By then it was getting late afternoon, and I think the camera incident sort of ruined the fun. They decided it was too late to go to the car show and they had to go pick up their son from family’s house, and so Al and I came home. On the way home, Al wanted a coke, so I stopped at a gas station and got some coffee and him a diet coke, and we splurged and each got a small cake doughnut.

As soon as we got home, he headed to his bed, and I am sitting here waiting for him to get up so I can fix supper

Why Am I Always So Ditzey?


Boardwalk

Boardwalk

Two days a go, the new caregiver arrived three minutes late, and Al started fidgeting in his seat. He just knew she was not going to show up like others had not in the past, but she did come, and he smiled in relief.

The two of them spent some time chatting and then she took him to his bathroom and gave him his shower. That seemed to go alright with no problems. The problem arose when Al came back out here to the living room, like all of his other routine days and he just wanted to sit and watch television.

Here, he had the opportunity to be pampered and spoiled, and he wanted to watch the boob tube. She prodded him with different questions, and finally got him  up, because she asked him to show her his coca cola collection. He did this, but I could tell he would rather stay on the couch.

Soon the two of them were back out here and he returned to his favorite position of lying down, and dozing off. I think one of his pain medications is the culprit for this dozing off, but am not sure, as he does it also in the early evenings after supper too. She sat there, and the room became stagnant with no one really talking but the television.

At lunch time, she followed us to Dairy Queen, where Al wanted to go because they still have the blizzards on sale. After lunch was over, she and I talked, well, I did most of the talking, I guess.

I told her I felt embarrassed because I figured with someone other than me, he would light up like a Christmas star, and shine through much conversation. I suggested that we go from four hours a day down to two, but I could tell  by her face, that she did not like that, she wanted to earn a pay check, which I understood.

I told her that I wanted to drop down, because it was obvious, that he truly didn’t feel well, and I had thought it was me that he went around here with his feelings on his shoulders, and if there was an outing, then we would extend the hours to however long the outing was.

Yesterday, she comes back and on time this day, so no stress for Al. lol She asked if she could take him to the Boardwalk, which is where many people go for walking pleasures. I said yes, if Al felt like going, and he said it was alright with him.

I showed her how to tear the scooter apart, so that she could get it in her trunk, and at 10:30am, the two left. The drive is about two miles from here to get there. When they left, I got out of this house, and actually walked around my addition too. It was nice to be in the sunshine and have no thoughts running through my head but mine.

While I have found someone to come in, there lies another problem, which is the cost. It is quite expensive, even though it is greatly appreciated by the physical help. I had called Medicare about the same time as placing the ad, and there may be a chance that Al could get some physical therapy that would help his weak body, and then maybe, they would also be able to give him a little bit of extra attention to. So, I feel a little funny inside, as I have a caregiver, who doesn’t want to lose her hours, and in order to keep her hours, she takes him for a walk on his scooter for the entire time. When they got home, the battery of the scooter was dead, and Al could barely walk from sitting in the same position for so very long. This was clear to me what her goal was, but Al suffered and collapsed into bed from exhaustion. Then there is maybe some help from Medicare where they would pick up the tab instead of me.

I am confused right now, wanting to do what is right for Al and for me, but wondering how long I can pretend that the four hours each day are really needed, pleasing the caregiver, and then knowing also on the other hand, that Medicare may help with therapy and also pay for this.

Why can’t I be more tough inside? I know that Al paid a  high price being on that scooter for way too long in order for her to get her hours in. So what is my point here? I am confused……..

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.

 

I Hate You Devil!


The Wicked Witch of the East as pictured in Th...

The Wicked Witch of the East as pictured in The Tin Woodman of Oz by L. Frank Baum. (Photo credit: Wikipedia)

What would it do to your personality if you never saw sunshine, or never felt the rays warming your soul. Can you imagine always living in the dark, only once in a while peeking out from the hole in the tree, to say hello to a passer-by?

This is how it has been at our house all day. I think it was triggered yesterday, when Al and I went to Wal-Mart. We went there to get him his hair cut. With his heavy sweating, the over abundance in heat, he chose to get a buzz. I will have to admit when I first saw the finished product, I heard a small gasp come from deep within myself, but he likes it, and this is what matters in the end.

After we left the hair designer, we made our way over to the toy section, where Al went through all the vintage cars. Now I will tell you something. The cars take his mind off of himself, so if I could let him sit there all day and gaze at each car, if I could buy him every single car, I would, just to keep his mind on somewhere else but himself.

He picked out three cars, and he placed them in his cart on his scooter. We then made it over to the grocery section, and by now he was starting to tilt over in his seat. I was confident though that he would not tilt far, as a dear blogger friend, had custom-made him a special harness strap to help him sit up, but the more leaning he did, he eventually had no more control, and the strength of the Parkinson’s snapped the harness right in half. It pulled the snaps apart and over Al went, not completely over, but too far. It looked like if I blew a breath from the opposite direction on him, he would go completely off his seat.

I had to get some groceries, you know, the ones you have to pick up through the middle of the week, and I didn’t want to have to take Al back out again on the same journey, so I pushed and walked, pushed and walked him through the aisles. In between pushing, and queuing, I tried to remember what I needed.

We finally were at the last two rows, and all hell broke loose. Now remember, the day before when I spoke of knowing I was learning through Al’s illness? Remember how I said I was going to lean on God more? Well, the devil didn’t like it so he set us up good. Al fell for it, hook, line and sinker, and I have to admit, I was losing patience at trying to balance everything happening around me, when we came upon the wicked witch of the east.

Right before our wandering eyes, appeared our father’s girlfriend. Now this girlfriend had told Al many times as our dad was in the progress of dying, that he was lazy, that he made our dad miserable, and that he was the reason dad was so sick, because Al had worn our father’s health down.

As for me, this woman used to tell me rotten things while dad was still alive. She said things like if I would have known he was going to get sick, I would never let him in my bed. Also, if he doesn’t start getting out of that chair and acting like he is happy to be with me, I will send him home to die. Now these comments here were told in the last three months of dad’s life. I took care of him for the whole year he was dying, but the last three months, I padded the recliner, to keep pressure off his sore bones. Dad had bone cancer. The cancer was eating holes in his bones, and he was very weak, frail, and in a lot of pain, but I was forced to hear this crap, because I cared for him while he lived in her house.

I could give so many examples, but it causes a huge lump in my throat, as I haven’t mourned my father yet, and I can not deal with the memories, so back to Al.

He saw her first. He let out a big scream, right in the vegetable section. Loud cries came from his throat, tears were pouring from each eye, until I think I saw his eyes floating. He was pointing in her direction. I looked to where he was pointing, and I set eyes on  her. She looked at me, and I looked at her, daring her to come one step towards Al.

Al is yelling, I didn’t do anything to her Terry, I didn’t! She doesn’t like me Terry, she doesn’t. She wouldn’t let me see dad when he was dying, she told me to stay away Terry. I believed at that moment I learned how to multi-task. I tried to comfort him, telling him I would protect him, that I would not let her come near, I was still trying to finish my grocery shopping, since I was almost done, and I was trying to speed a slow moving man and scooter to the closest cashier counter.

Everywhere that we walked, she would watch, and not be too far away. She reminded me of a panther, getting ready to pounce, but yet she showed fear, as she never came close enough. We did make it to the cashier, with me praying constantly, God help us, God help us. God just let us pay and leave with no problems.

God did get us out of the store. I had a very tipsy man to help get out of the scooter, as all of his energy had been used up consumed by the witch. His crying kept him from concentrating on getting himself out of the scooter and into the car, so I did what anyone would. I looked quickly around for help, but there was no one who offered. I took a deep breath and with all of my power, God and I got him into the car. With much scooting him, I finally got him arranged enough to get the seat belt placed and buckled.

I then turned to the grocery cart, and realized I had left my purse in the cart along with the groceries, and I thanked God for watching over my purse, because it could have been taking so easily with one step. I opened the trunk, and took Al’s scooter apart and placed it in its place, then I loaded the groceries and Al’s cars to what ever empty spot was left, and had to put the rest in the back seat. I pushed the cart to the cart holding area, and got in the driver’s seat. I started the car, so the air could come on and cool Al and me down, then I rolled the window down on my side, and let my head fall back to the head rest, and smoked a cigarette. I had to rest, I could not drive in this state of mind.

Al just sat there staring ahead, but no more tears, just sniffles. I felt like after a few minutes, I could drive, and so we left. We get about three-fourths of the way home, and I see a little blue tracker in my rear view mirror. I didn’t say anything but my mind was on radar alert. Was it her? Oh, it couldn’t be. Oh my gosh, no, it is! She was right behind us.

I must have let out a gasp or something because Al looked at me with slight fear in his eyes and asked what was wrong. I told him the witch was behind us, but do not worry, I will protect you. When we got to the road we normally would turn on, I turned the opposite direction, going down the wrong road. Al is making it clear to me that I am not going the right way home, and I am making it perfectly clear that I did this on purpose. I asked him if he wanted her to know where we lived, and he then understood and became quiet. She must have gotten tired of the mouse catches the cheese game, because I saw her eventually turn in someone’s drive way and go back the other way.

I pulled off the road, and put the car in park, and I left the car running so Al would stay cool, and I got out of the car, and leaning against the car and smoking a cigarette, I screamed to the skies, why, why God do you let this happen to us? All we ever did was love our dad, all we ever do is try to be good kids, why is this happening?

Out of the blue, my legs felt weak, and I felt myself slip to the ground, sobbing for the loss of my parents, sobbing for the disease that has chosen Al to live inside of, sobbing for the loss of my sister’s love, and the family that I have lost through a stupid Will. I don’t know how long I sat there, I don’t remember much of anything, but as quickly as it happened, it left, and I came back to my senses, and realized the car was running with Al in it. I got back up and got inside, and drove us back home.

He has never been the same since. There is a sense of misery screaming to get out of him, causing tears for the whole day today. He had struggled with choking on his milk, which is my fault, I had forgotten to put the thicket in it. He has complained of pain all day, although he is on strong pain pills. I just left him sitting outside on the patio furniture, after trying to talk to him, but all he could tell me is he is so sad, and can’t fix anything anymore, and he is wanting to be by himself, because he is asking God to help him die.

Our Walk


Last evening my son and his family invited Al and me to go with them on their walk. Al said it was fine with him, so we both got ready, and I placed his new scooter in the trunk of the car. It was a warm evening and the time when we arrived at the spot was seven pm. There was a nice breeze that let you enjoy the walk without the sweat. We saw nature at its best for being in town. There are several walk way paths around this area. This one is close to the hospital. My son and his son spent most of the time taking blades of grass and producing music through them, by placing them a certain way in the mouth and blowing. His girlfriend and her three year old were fun to watch, as she was chasing after him as he was racing to investigate every bug. Al realized that he could go faster on his scooter so he would go way ahead of us, and then stop and look back, and smile, resting his arm on his head, as if he was just being patient, waiting for us to catch up. I heard a lot of different birds, and we saw frogs and tiny fish, and plenty of deer foot prints. The trees were in line with the sun setting so I took a few pictures and have placed them here so you can see what we saw. We walked two miles, and the time went very fast, as there was so much to see, with my family and God’s nature. We had a really nice time, and am hoping they will invite us again soon.