Watermelons, and strawberry pie
Fresh snapped green beans
Canning and freezing all day long
This is what summer means.
Daylight staying out so long
Kids staying up real late
Figures and salads a perfect pair
For the convertible and a date.
Swimming and camping go together
Bugs are welcome too
Isn’t the summer the best of all
For fun times, me and you.
I am not really positive on how much about Parkinson’s I want to know. Maybe for me to cope and handle daily issues as they come is better for me.
Today, when I went to the doctor with Al, the doctor was supposed to talk to me about the swallow test. He did check Al with his fingers, probing around the muscles of his throat, and said to me that this was another part of Parkinson’s. He could feel some flex in the throat muscles and he wanted to ask me a question, and then looked at Al.
I am sorry, that I am adding this after the fact that I blogged about it earlier, the doctor visit, but I could not write about this at the time, as it was too sensitive for me at the moment.
I asked Al if he had to use the restroom, and of course he said yes. After Al left the room, the doctor tells me that he has noticed some weakness in the throat area, but am I willing to have a tube feeder placed in Al yet.
I know what tube feeders are. They are used to help feed the body. They also make it nearly impossible to have any kind of normal life. It didn’t take me two seconds to answer the question, no. He explained to me that if the test came back positive, it would change both of our lives, because knowing the tube feeder was in the near future, from the test, and then he closed off the sentence with no ending.
For me it is a whole other chapter, a can of worms to be opened. I am not ready to deal with this yet. There are other alternatives. I don’t want to see Al’s life become useless, alive, lying in a bed, or sitting in a wheelchair, going nowhere. I can’t do it!
Now I understand that the test was not performed, and that even if it was, there was no result as of now for the test.
We talked about a product called thicket, and the doctor thought this was a good alternative for now, so Al and I stopped and picked some up on our way home. I will use it in his beverages, and it will thicken up as much as I allow it to, making it easier for him to swallow. Even as the illness progresses, you can make the drinks so thick, they can be eaten with a spoon.
For me, this is the way to go. It puts the test on hold, and allows it to slip from my mind hopefully within the next couple of days. Time is what I am borrowing, and I will borrow all that I can.
You may be asking, why don’t you just place him. I can’t, not yet. As I said earlier today I cared for others also. Do you know what it is like to give your own father a complete bath? Or to spoon feed him because he is too weak to raise his hand to his mouth? To wipe a way the tears because he is telling you at this moment he is scared he is dying? To sit one day a week for eight hours, and the two of you glance out through the windows, watching cars pass by, and then glance at each other, both realizing this blood transfusion is what is keeping him alive? To wipe your fathers bottom after he potties because he can no longer do it?
For the first time I am getting it out of me. Talking about it. The terrible pains I went through for love. I divorced easier than watching my father die. I sat for hours on the porch swing with him, in the summer, him all bundled up in a blanket, and me in a tank top, shorts and barefoot, and I made the swing go because he was too weak to make his feet work. Many times I used a feather bed from a double bed and padded a recliner, set my father in it, and placed pillows under his arms, and legs, and behind his neck, because he couldn’t take the pain of anything touching him. For the last three months, I could no longer hug or kiss my father, as he couldn’t bear the feeling of something touching him.
I took him to every doctor appointment. I talked to insurance companies on a regular basis, fighting for my dad’s rights, while the companies thought nothing of him and only thinking of money they wanted to hang on to. I checked his sugars several times a day, and gave him insulin shots three times a day, as the Prednisone, made his sugars go into the 800-900 ranges. I watched him continually lose weight, and I read the Bible to him. We prayed together, and we cried together. No one came, but maybe twice during this whole time he was ill. I think they were afraid to see him like this.
Now, I am reliving my father all over again, through my brother. I don’t have the responsibilities yet of what I had to do for my dad, but I do know, that while we were eating our supper tonight at Pizza Hut, he pottied all over himself, and this is a sign to me that things will get worse.
I took care of my dad until he died in my arms. I don’t know if I will be able to care for Al this long or not. When my love is strong and the compassion I have for life and people are even stronger, I feel I can do anything. I will watch over Al and do for him as I did for our father, and when our time is up, I will let him go.
The easy thing to do is just switch my brain off, and call it a day. Can I do this realistically? No, it still works even though I don’t want it to at times.
I take Al to the doctor today, and all in all it was a good visit. Al only cried the whole time, but no fit throwing or cursing today. He has gained one pound, but I take into consideration, he has had breakfast, but I don’t care if he gains a pound or two, because he is ill, so let’s keep the weight on!
Al has a few doctors that specialize in each of his illnesses. I can deal with this, pretty simple, just carry my schedule book with me whenever it concerns him.
Here lies the issue, the problem that I am having, in knowing which way to turn. Two of his doctors say there is nothing medically to be done to help Al any longer, so they are now considered our PRN specialist doctors. One of these two doctors, tells us on our last visit, that we need to look at keeping Al as pain-free and comfortable from now on. Also stated, was to take him off some of the medications, and bring him down to just the heart and blood pressure and his one diabetic med.
His family ,primary care doctor, which I took him to today, also went over his list of medications and said he agreed, that the ones that remain, are the ones needed to help him stay alive. He also gives Al a prescription strength pain reliever to start. This is good, I think. Al has much pain 85% of the time, and it is only a once a day pain pill.
Now the doctor sees Alvin crying, and he keeps his eyes on Al as he is talking to me. He is just observing, I am sure, Al’s tremors, and his whole attitude in general. We talk some, using hand talk and shortened words, since we are talking in front of Al, about his Parkinson’s and he comments to me, that Al is a long ways from nearing the end. Wonderful,yes, no, not wonderful, what? what about the other two doctors opinions?, what about the way Al feels about his own life?
I don’t know how to feel, and this makes me feel awkward and uncomfortable. I don’t want to lose my brother. This is a good thing. I don’t want my brother to be in pain and cry every single day. This is a good thing, I think. There is no medication to help him anymore. I don’t want to see him suffer for years, and on the other hand, Al is so sure he is at his nearing days, and I must explain here because of previous comments made. I am speaking for my brother about his time ending. These are not my thoughts, but his. I am not God, nor do I profess to know our time to leave this earth. Alright, I cleared myself on that one. Of course, I do not want Al to suffer for years to come only to have him here with me. What kind of animal would I be to be that selfish.
So my feelings are twisted right now. Do I play and pretend with Al that he believes his time may be coming close, because he believes this is what God tells him?
Do I listen to the two specialists that believe there in nothing to do anymore medically, and we give Al as much comfort as possible?
Or do I tell Al that he needs to quit thinking like this, and this may not be God speaking to him. This could just be turmoil that is going on inside of his head due to his own fears. Do I tell him to stop, that we are going to stop this talk, and let’s find all the pretty things in life to occupy our minds.
I want to be there for Al. I want to believe the doctors, but which role do I play and at which times?
Hang on, someone turn the lights on, because I can’t find the switch to my brain, so I can shut if off!
I was surfing my Facebook, and came across this saying someone had posted. I stopped and stared at it, and then reread it a couple of times.
I got excited at the prospect that I, me, only me, can make anything happen if I, me, and only me, believe!
This gave me a few moments to reflect back on my life and go over my to do and wish list.
When I was in high school, I had a dream and a plan. I was going to go to college for four years right after graduation and become a physical therapist.
Then I changed it later, and decided that I wanted to be a therapist for troubled teens.
Instead of doing these, I chose the other route, and got married and started a family. Now many years later, after raising my family, the best I knew how, I realize that I have believed in me. I have followed my dream. I am helping others.
I have been a CNA and a Pharmacy Technician, playing both roles for the past 22 years. I have worked with many types of patients, making them comfortable, and I have also helped patients feel better by getting their medications ready for them.
For five years after this, I did private care. I took care of some lovely people, some husband and wife couples, others whose families worked, and needed their loved ones cared for. I was their therapist in some ways. I was a good listener, and I spent quality time with them. I also had my name put on the hospice list in our town, and got a few calls to help care for one who was at their end of life. This was the most challenging and rewarding job I have ever had. It brought me to a different level of humanity. It drew me into the personal lives of their families. It helped me to understand and see first hand how a body prepares for leaving this earth. It is very emotional and your love flows from within straight to their souls.
After leaving hospice, I took care of my own father, who suffered from bone cancer for one year. I was not only his therapist, I was his right hand lady. I did everything for him, except take away his illness. As I laid beside him on his bed, holding his hand, telling him how much I loved him and how much I was going to miss him, I had to add also, that I knew and understood why he had to leave me. I told him he would be brand new with no more pains, and to give mom a hug and kiss for me. He died holding my hand a few moments later.
After that chapter of my life was over, I immediately started caring for Al. I have now been caring for him five years this December. For him I have also been his therapist, listening to all he says. I am also his teacher, guiding him hopefully in the right direction. I am his nurse, placing a bandage over his heart. drying his tears with my words, and offering him comfort from the Bible. I use examples of others to help him remain strong. I give all that I am able to give.
He may be mentally challenged, and he may not understand all that is being said to him. He may have moments of dementia, but that only happens in the present world, the past world is very keen to him. Mental challenge is not what people think. It varies in different degrees of it. When someone is mentally impaired, there is usually an area where they are even smarter than I am. God did something special when he created these people. He made them so that they touch our hearts, in ways no others can.
So today, as I look back, I may not have received that four-year college degree. I may not have that
certificate hanging on a wall in an office somewhere, but I have more than this. I have years of experience with the human life, learning to love what we do not call normal. I have learned to be a good listener, and to only offer advice when asked.
I have been given the desire to be a helper. This is who God has made. Me, a human being, capable of loving, feeling, being able to touch others lives, capable of being hurt.
I am happy that even though I didn’t realize it until this very moment, I have followed God’s path for me, and no matter what others think of my crazy thoughts and ways, I know God is proud of me.