Anything Else?

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

Al’s Changing Days

A few days ago, Al got up in his usual morning routine, and came to sit on the couch, instead of doing his breakfast first. He told me in his exact words, that he had the most excruciating pain he had ever felt in his leg. I looked at it but I saw nothing. He told me that his leg was swollen, but my naked eyes could not take it in. From that moment on, the rest of the few following days have been very sad and depressing for him. He has had pain and more freezing. I talked to the nurse and she said the freezing mode of his legs was causing rigidity in them and the muscles were downsizing and he would feel this pain, but they had him on the best pain medications.

He can have moments of joy, but I see mountains of pain and tears. I had pretty well made up my mind to go ahead and place him for his own sake, not mine. It was a difficult time, processing agony for me, but someone had to do it, and my name was being called by the pitcher.

Have you ever had ideas that you thought were so good, only to have them squished like an ant you step on? This is the way I felt after I talked to the professionals and then confirmed what they had said by googling.

Did you realize that there were new health care plans in effect that have been placed recently that make it difficult to place another person, if money is being held in certain trust accounts? There is, and it is sad.

The law now says that for certain trusts, and there are many that are included, have to be paid back to the state, once the person dies. I will not go into grave details, because it is complicated, and most of you are not involved with placement thoughts in your homes, but in the end product, someone , can be made to pay half of what Medicaid paid out when a nursing home patient passes away.

The thing that bothers me is with the new laws coming into effect, and our President forever changing the health care here, one or more persons, could end up having to fork over monies they don’t have in order to help programs get a refund for what they loaned out.

First of all, I didn’t know we were being loaned money. I thought we paid in through all those little items showing up on our paychecks for years and years, but then, I remembered how in debt our country is and the threats of social security not even being there for ones younger than us is real.

On top of all that, I was given a quote of over five thousand dollars to do all the paper work for the trust to properly make it into a state program.

Did you also realize that once you are admitted to a nursing home or some other type of home, you are sometimes giving up your home and your money assets, and did you know that if the person changes his mind a while down the road, and wants to come home that there are no monies there for further care and help at home?

It is sort of no win situation, unless you are so severely mentally handicapped, that everyone knows there will never be a return home, or you are so elderly, you would also fall into this category.

I have made my final decision to not place, and to hire extra or give more hours to caregivers in order for Al and I to have our breaks in our routines

Last evening, although I saw tears most of the day, he was willing to go out to a drive-thru supper and continue on to a car show here in town. Both went fairly well, except the car show. I got the scooter out and placed together, and got him situated in the driver’s seat, and off he went, but instead of stopping and talking to all of the owners and everyone on the street, he made quick loops around the show as if he was the driver of a race car in a hurry to win. He came back to where I had been relieving my back pain by sitting on a chair, and sat there, tears running down his face for no apparent reason.

I asked him if he was finished looking at the cars and he said nothing. I asked him if he would like to have some ice-cream that was being sold for the event, and he nodded in affirmation. He scooted and I walked over and bought him a nice two-dipper and had it placed in a bowl instead of a cone. We walked back over to my single chair, and I gave him the bowl and spoon, and he sat there, doing nothing. His tremors were acting up, so my heart was bouncing around at each time the bowl tipped to this side and then the other. He did not try to take a spoonful of the ice-cream, that I would have gobbled up, myself, but knowing it was full of sugars, I left it alone.

I asked him if he wanted help with eating it and he nodded yes once again. So I spoon fed him. I had also had to do that for the same day at breakfast. He had waffles and could not cut them up to eat them, nor could he place bites in his mouth. The tears were running down his face as I was feeding him his ice-cream, as I knew in my heart, we were out in public, and he was dying inside of embarrassment from people watching him being fed, although, I did not see anyone particular stare at him or I, and certainly, no one came to our side and questioned either of us why this adult was being fed by someone other than himself.

After the treat was finished and the bowl and spoon were properly disposed of he made no movement, so I asked him if he was ready to leave, and he said yes. He talked! Yes, I am ready to go home.

I am not sure how much he enjoyed this time out, but I do know it was not as much as he used to. I put him in the car, and tore the scooter apart, and we took off for the comforts of his bedroom and his bed, that he is coming to know better each week, as he lies more on it now to watch television.

I have hired a new caregiver for respite care, and I can only hope that she took heed of my words, that I only want someone who is interested in being with Al, and staying long enough to get to know him, and that I will not tolerate excuses of why you can not be here, unless God has called me and told me you have passed on. She is to start Tuesday of the following week for four hours. We shall see how it goes.

Now that I have slept on all of this new information thrown at me, and I see how Al is becoming, I ask for prayers in hiring another caregiver who can give more hours on a daily basis, helping him with feedings and showers . I would love to have a caregiver that will be here for six hours a day, Monday through Friday, the same caregiver who would shower him, help with his feedings, when needed, and to spend quality time with him. I do not like having caregivers with different names for different jobs. Let’s find one who can do it all for Al’s sake of security in one person, and also my sanity when I go to pay the person, and have to keep looking back at the books to see how many hours this or that person worked this week.

I know that many of you pray for Al and also for me, but I am asking for bigger request. One caregiver, who will stand by us and stay with us until everything is in order.

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 (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.

 

Should We Go, Or Should We Stay

Should I go, or should I stay. This was the question I kept asking myself all the late afternoon. My brother, Al, never came out of his crying mood, so I didn’t know whether we should venture out tonight, but I had promised him unless it rained we would go. It was first Friday downtown, and it was fifties night. There was a dress code of poodle skirts, but I didn’t have one, and I doubt if anyone wanted to see a an old woman with one on. I just wore my shorts. There was also a car show. My brother loves old cars, so anytime I hear of one locally, I try to take him. About an hour before it was time to leave, the power went out. I don’t know what caused it, maybe one of my baby squirrels got on a line, or maybe there was a wreck. It got warm in here, with the fans being off, and it woke Al up from his nap. This didn’t make him a happy camper, being woken up earlier than  his plan. I called the power company, and in less than an hour all was back on. No major issues of any kind, except for Al. After listening to much debate about why the power was off, I just looked at him and told him, if he could not get himself under control and try to dry the tears, we would not be able to go. He seriously did be quiet then, but the tears, he tried and tried, and they would not stop. I knew that this part was the Parkinson’s, and I wasn’t going to punish him for something he had no control over.  I had asked the new caregiver if she could go along tonight, as my helper. I decided to go ahead and take him. We found a parking spot up town not too far away from the restaurant he wanted to eat in. I got the wheel chair out, and put him safely in it. We took off on our walk to the restaurant where we were to meet the caregiver, Audrey. I didn’t make it a block, and we hit a bump head on, and it threw the wheel chair a bit, and Al got scared. I stopped and consoled him, letting him know I would never hurt him, and that I would be more careful. He seemed satisfied with this, although he hung on to both arms of the wheelchair, until we reached the business. I was a little concerned how we were going to get that wheel chair into the restaurant. I knew this  being a special day, the place would be packed. I was not to worry though. The owner knew us and he took the chair and placed it near his cooking area, allowing the caregiver and I to help hold on to Al and sitting him close to the entry door. As soon as we all sit down, his crying appears again. I didn’t know what to say or what to do. The caregiver kept chatting away with him trying to steer him into another direction. It was nice tonight, as I had no stares or remarks from other customers. He finally quit crying when his meal arrived. After leaving the restaurant, the rest of the evening was consumed by  looking at the old cars in the car show. Al spoke to everyone, sometimes reaching out to shake their hand. Some did look at him in an odd way, because they didn’t know him, but I believe they recognized his sincerity, so all shook his hands. It was rather cute, I must admit, how easy it is for him to speak to strangers. With me there, I don’t mind so much, but if he were alone, it would worry me. We were there about two hours tonight, and then a passing rain came through, and it got a bit darker, and I didn’t want him to get wet, so we decided to call it a night. All in all, I think he had fun. Here is a picture of one of the cars that Al and us looked at, and another picture of Al and the new part-time caregiver.