I am sorry I am posting another story. I can’t help it today. I think of the things that I feel are tragic. Kids getting sick, car accidents, speeding tickets, court dates, divorce, alcoholics, drug users. Losing a job, never having enough money, being hungry. There was a day, not long ago to me, that I felt the way I feel today. The loss of my father, my hero. Never to see him again. Missing him, never hearing his voice again. I did manage to move on with support from family and friends. I am opening up my heart, slicing it right down the middle, so you can see all it holds. Pain, my heart holds the pain for my brother, because his pain is on over load. Tears. My heart has many tears flowing through it, because my brother’s tears have fallen all day and mine have followed his. Grief. My heart holds grief, because my brother keeps telling me that he doesn’t want to live. That his tremors have won. In my own personal life, I have had sorrow. A loss of my parents, a friend or two throughout the years. A job loss. Having no home at all. Scarcity in food. I hurt, but I healed. Holes in my heart closed. Life moved forward. I am now forced to the largest challenge in my life. For today, I have had to introduce the wheel chair into our daily lives. A gait belt for better support. News was announced that social outings were going to be limited. My challenge is to watch unstable walking, aggressive tremors, seeming to worsen each month, soft-spoken words, drooling, slow movements, choking, swallowing, the use of canes, walkers, I have been beaten down by this wicked disease. My heart feels like it can break no more, until this moment. My brother came out of his bedroom, telling me he was watching The Ten Commandments. Tears were pouring out of his eyes. I could barely hear him speak. I bent down close to his face and asked if he could repeat what he had just said. He told me, that the show really bothered him. I ask him why. He said, I am tired. My tremors make me tired Terry. I can’t do anything anymore. I can’t even change my own bed sheets. The tears became stronger and stronger, and I heard him choke out the words,,,,,,,,it makes me think that I am going to see Jesus soon.
Wearing my little, white bonnet with the big bow on top, held under my chin with a white piece of elastic. The frilliest dress you have ever seen. White, lacy anklets, with new, black patent leather shoes with gold buckles. White cotton gloves. Black suit,white shirt, with black, clip on tie. Shiny new black shoes.This was the picture of my brother and me on Easter Day, April 1964. After going to sunrise service, followed by breakfast, you could find the two of us nearly asleep during the main service. Leaving the services with a little cut out milk carton, with a paper handle, green grass holding little speckled eggs, colorful jelly beans and a chocolate Easter bunny. We could hardly hold our fingers back from trying a piece. Mom said we had to wait until after lunch. We weren’t to spoil our meal with sugary treats. We pulled in the drive way and went in to our house, hearing the phone ring. Mom answered it. I can hear her today saying, we just got home, yes, I saw them there. They are doing well. We are on our way. Our grandparents lived on the same property as us, so it was a hop and a skip to their house. We walked in their house, and I can still remember the smells of ham and turkey that drifted through my nose. The tables were filled with foods. Deviled eggs, mashed potatoes, gravy, sweet potatoes, yuck, green beans and green salads, turkey dressings, pickles, and black olives. On the other table, was a big, white bunny cake with piece of coconut all over it with pink paper ears on top, and black gum drops for the eyes and nose. Pies, cherry, and apple, and my all time favorite, black raspberry. Everywhere you looked, there were people. People I had not seen like in a year or so. After dinner was over, all of our cousins and us went outside to the small, tiny, red barn. Our grandpa opened the big wide doors, and inside was gobs of yellow fluff. He told us to walk slowly, and talk softly. We each crept up to the tiny wire fence holding them in. We each reached down and picked up a yellow fluff ball. So cuddly, so soft. They chirped and chirped, and made us all giggle, as we gently held them and tried not to let them jump out of our hands. Soon these baby chicks would find their way to mom and dad’s freezer. After visiting with the baby chicks. We could hear our names being called, telling us they were ready for us. We ran to where the voices were coming from and were handed an empty, brown lunch bag. It was time. We were all so excited and eager to find all the goodies to fill up our bags. At the call of 1,2,3, we all ran as fast as we could, stopping and looking at anything that had color. We found lots of eggs. Pink, yellow, blue and lavender ones. We each came back to where our parents were standing watching us and showed them how much we had. They seemed as excited for as we were finding them. We all went back in to grandma’s house and had a piece of the bunny cake. The next thing I remember is waking up in our own beds. Dad had found us napping and had carried us home. It was the best Easter we ever had. I am so thankful that I still have my memories as Easter Day approaches again this year.
Very little sleep last night. Restless, stomach ache, acid reflex. Nerves were a mess from the prior night. Five am, I was still tossing and turning. Rolling from side to side, trying to get comfortable. Finally got up and used the ladies room. Back in my warm bed, I took two acid relievers. I think around five thirty, I finally fell asleep. I was woken up at eight forty-five am with someone letting me know he was up and ready for medications. Good going there sis. I had over slept! At least, he didn’t try finding the hidden medications and taking them himself. I must be up, no matter how I slept. Today is shower day, and the caregiver was here. We spent a lot of time talking to him after his shower. My heart had the biggest ache in it and my stomach had this huge knot. We were explaining to him that regularly scheduled outings were not going to happen anymore. Tears streaming down his face, nose running, he put his hands up in the air and asked us both what had he done wrong. By that time, my tears were flowing along with his. Explaining to him about safety issues, constant stumbling, legs being weak from tremors, was all just going over his head. He did not understand. He said he was going to be confined to the house every day. He wanted to die. He was ready to die right now. I have no words to describe how this affected me. I looked at the caregiver and saw a tear in her eye. This was a very emotional time for all three of us who separately have our job to do, but together share the same pain, heart and soul.
The time is 11:55pm. Six more minutes until a new day. I had two days in a row. Now the record has been broken. I am being cussed at and I am not even in the room. The baby monitor is picking up all of his choice words. He is telling me that he hates me, and that I hate him. I hear the b word, and dirty f word. I should be hard to this, but I am not. It happens like clock work every time. I am sitting here sharing my evening with you with both my temples hurting, or I should say throbbing. My ear on my left side is hurting, but I think that is from earlier today, when I was outside. Better known as allergies. My neck feels stiff, but I have to write this down, in order to de-stress so I can get some sleep and be prepared for a continuing of tomorrow. Yes, the subject won’t be dropped, just because sleep has separated us. I will get the evil looks in the morning, and the crying will begin, and the accusations of how he does everything wrong. I want to cry, but I can’t. I wish I could. I haven’t cried since my dad died almost five years ago. I think I cried every tear I had stored up for years to come. Hence, I get the headaches now instead. There are two sides to every story right? His side, Parkinson’s and dementia. Tremors, forgetting, slow thinking, confusion. My side, sister, caregiver, protector, and guide. I can’t be on both sides. I have tried. Compassion brings on the “you are treating me like a baby”. Sitting down and having a conversation brings,” I don’t understand what you are saying”. Raising my voice brings on nothing but anguish. Taking away pleasures brings on depression. He doesn’t have many pleasures left anymore. This all happened in less than five minutes. He almost fell into the refrigerator, then kind of stumbled the opposite direction, saving himself by clinging on to the kitchen table. I watched it all, hoping he would realize, he needed his cane or walker, but no, he refuses. Too much pride. What will people say. People will make fun of him. We go round and round every day. I have tried every way I can to explain the dangers of falling. He fell straight into the Christmas tree at Christmas, but that doesn’t give him any wake up call to use the help devices. He and I are both stubborn, but because I love him and want him safe, I have to win this one! Lord, take my hand and guide me on this journey. Bring some sense of peace for my brother and give me patience to endure what he is going through. I can’t do this alone Lord. I need your help. The bible says you will not give me more than I can handle. I am counting on this Lord. Amen. I love you Lord. I have sat here for about five minutes just staring at these words I wrote, and I can feel a calmness washing through out me. My headache has lightened a bit. How wonderful is our God, that he can do the smallest of things like help me to get some rest tonight. Good night everyone.