Letting It Go

I am listening to Joyce Meyers right now. I love watching her show. It is every day living at its best. I am always shown, and tonight is no different, things I can change about myself. I am hearing her say life is not fair. I didn’t expect her to say this, but I do think it more often than not. She is saying that if we consistently do what is right, we will get the right result in the end. I complain in my mind that I can not date, because no one wants a woman who is taking care of a brother. This is wrong! I get responses from men who are losers. They are looking for fun, not a future, not a family. I understand this to a point. We, in my age group, have raised our kids, and want some fun and relaxation now. When I look at it correctly though, I want a man who has compassion and a huge heart for life. Joyce is saying do what is right, even if you do not want to. You will be rewarded for it later. I think I fall into this category some what. I take care of my brother, because I choose to. I could look the other way and have strangers looking over him, but not caring for him in a more personal way, like I do. I am giving him a better quality of life, and I know this is what God wants me to do. She is now saying to quit telling people how to live their lives. This is one of the things I love about my friends here at WordPress. For the most part, my followers are supportive and not telling me everything they think I am doing wrong.  This is the best thing about having true friends. Friends do not judge or accuse each other, they support each other. She is commenting about how many of us have been mistreated as children and youth. God likes nothing better than taking people who have been hurt, abused, misjudged and telling God here I am, a broken mess, feelings all messed up, no confidence. Our Lord loves to give double blessings to those who come from hurt straight  to him for help. I have learned tonight, that my struggles are here to make me strong. My struggles are here for God to bless me for enduring them. I have learned that I can choose to not live with my past, to let it go, and to expect good things to happen each day from our wonderful Lord. This life I am living with my brother may not be so much about lessons that I need to  learn, but a way to show God that I trust him that he knows what he is  doing, and if I am  patient, and expect rewards from him through blessings, it makes my job much easier to do. I am pleasing someone. I am pleasing God. I worked so hard my whole life trying to please others. We can not please others. It is a no-win situation. We are humans. We can please God though,and this is the only person we need to be concerned with pleasing. I learned from Joyce tonight that I can say no. I do not have to bend over backwards, going beyond my own means. I don’t have to be a mean person, but there are boundaries, that each of us live in, and when we go outside of the realm, we are the ones who end up with hurt souls and a building up of anger within our hearts, and this ends up not being a peaceful house for God to live in. Yes, I love Joyce Meyers. I have to listen to it every day in order to keep learning and remembering. I am  human and forget many things. I can get wrapped up in my own life and my own feelings, and need to be reminded of how to move past this and continue my journey towards meeting God one day.

DILO 3-21-07 Listening to Joyce Meyer (Photo credit: Old Shoe Woman)

There Are Changes, And No Changes

licking salt off the plate at the thai curry in a hurry restaurant – _MG_8072 (Photo credit: sean dreilinger)

How do I do it? Get over myself? Get used to this is the way it is, and there is nothing I can do about it. It is not his fault, it is not my fault, it is the disease’s fault. I tell myself that I am being stupid, that people aren’t really looking at him, but I know they are, I have seen it many times. It bothers me very little when we are at home, because I realize that he can’t help it nor fix it, but when out in public, I want to sit somewhere else. I have to change myself, and quit thinking on me. Parkinson’s has helped my brother, Al, to stick his nose to the plate when eating. I have questioned Al here at home as to why he does this, and he tells me so he doesn’t drop his food, or miss his mouth. I understood immediately, so why aren’t I understanding out in open view? Is it my upbringing of good table manners? I sometimes think it is. My mom was very strict about table manners. No swinging of feet under the table while eating. Sit up straight, raise the fork and spoon to the mouth. Don’t lean-to the silver ware,lift, lift, lift. I have even been poked with my mom’s fork, for having my elbows on the table before. It used to make me mad when she did this, but I learned quickly in order not to get poked again. You can not leave the table until your plate is emptied. If I didn’t care for a food she served that day, I could just sit there until I did learn to like it and eat it. Don’t get up from the table until you ask permission. May I be excused please? Today, if I was placed at a table, where you had many pieces of silver ware, I would know which to use first, but I eat at my computer table, while Al eats at the kitchen table, because it is uncomfortable to be stared at the entire meal, plus the silence kills me. Al watches me like a hawk looking for prey. It is instilled in him from the unkind remarks our dad used to make to him. Dad never said a kind word to Al, he always cut him down. Al didn’t do anything wrong, it was his mentally challenged brain that dad would not learn to accept, therefore taking it out on Al constantly. Now that I am his caregiver, he has just transferred all his feelings of dad over to me. I used to ask Al to quit staring, and stop being so quiet. It didn’t work. He would get angry with me, because I was putting him on the defense again, and I got so nervous, that I would get up from the table and not eat supper. The solution was, separate us. Now, I have less table manners than before. I remember them, I just don’t use them. My elbows are on the table, and no one is poking them.  He watches the news, and I listen to the news, and eat, and try to read blog stories. It doesn’t feel very friendly, but it works. I also don’t like watching the news any longer. Not for the reason, that you think, that the news sucks, or that all is negative and bad things, but because Al doesn’t understand a lot of things. He picks up what the newscaster is saying, but he doesn’t go deep enough in his mind, to analyze the reasons behind what is being said. An example is yesterday evening, the weather man was telling the weather. When he commented that the next three days were going to be exceptionally warm for spring, with very little rain, my brother got pretty upset. He was talking not to the weatherman, but to the weather itself. He told the weather that it knew better. That it knew that it was supposed to be not so hot for spring, and then he answered the weather sitting on the opposite chair, as if the weather could talk and there was a two-way conversation, although it was only Al. He told the weather, that it knew better and that it would be sorry, and then he said, I thought you would see it my way, you bad thing! Al does this two-party conversation alone all the time with the complete news. I have asked Al if he would like me to change the TV, or maybe we could just turn it off during meal times, but he said no. He explained to me that he always watches the news during his meals, and that I should know this by now. We don’t change Al’s routines, unless it is a dire emergency. He gets very confused and can become quite agitated over the slightest changes. I am the one who has made all of the changes in our lives. I do not get out and walk any longer. I no longer sleep in because he could get up before me. I can no longer pick up and go to anyplace in the afternoons, because he has to nap between three thirty and five thirty daily. I have to change his bedding each Thursday whether I feel like it or not. His room and bathroom has to be cleaned and swept on Fridays, because this is the way he has always done it. Suppers have to be served at six because this is when he has always eaten, so sometimes I don’t even eat my own until seven or seven-thirty, because I am not hungry. We may eat a late lunch, and he is not hungry either at six, but he has to eat. After his birthday party, there was left over ice-cream, so Al started having a dish of it at bed time. Now I have to make sure there is ice-cream here each night, because he has formed a new routine. So I am always going around here checking my mental list of what day is it, are the right foods  here, planning my activities according to what I am serving for dinner. I never lived like this before. I was much calmer, a happy-go-lucky gal, that played my free time from work as I saw fit. Now, I am trying to figure out how to get myself to accept and be calmer about his nose in the plate out in public. Although, I do understand, I still get embarrassed. What can I do?

Jet Puff Marshmallow

Have you ever bought one of those bags of jet puffed marshmallows and roasted it over a camp fire? You see how it grows and grows until you are forced to take it of the stick and eat the finished product, all soft and gooey, stuffing your inner mouth with sweet flavor? This was me in the beginning. A jet puff marshmallow. One of many in the bag, looking all the same. No telling one from another. I have always hated one thing about myself all my life. Confidence. The lack of confidence. I am not sure why I never obtained it. It never really grew on me. I hate to place blame when the blame should bounce back on my own weakness, but I really do believe it was the lack of hearing compliments about me, and the constant need trying everything I could, to earn one. I had wonderful parents, but that just wasn’t part of who they were, giving the pat on the back, and saying good job, daughter! It may even stemmed back further, before I even knew and understood what being accepted was really all about. It may go back to the time when I was four years old and remembering hiding behind the living room chair, listening to my real mother and step mother argue about me. One saying to the other, you will never see her again, and the other saying I will be back when she is sixteen, and we shall let her decide who she wants to live with. Our brains are working properly at that young age. They just don’t jump-start once we start going to school. Maybe I got a part of that argument in my head and it stuck all of my life. When you hear things that are negative it has a great impact on your life. Sometimes I think I remember those more than anything else. I can remember my mom making a fly by night comment on one of my elementary school year photos, about me being the one stuck out in the photo, that she was going to HAVE to put me in the Weight Watchers program. One Easter Sunday morning, I was sitting up in the big people’s church and mom told me I was constantly chattering and flipping my hat off and on. I had totally embarrassed her and she could not concentrate on the message. The most critical comment that has always stuck with me was when my mom told me she could never love me as her own. I knew then, that I was unworthy of love from anyone. If my real mom had left me behind, and my step mom had made this comment, I must surely be a bad seed. So, the marshmallow remained in the bag, never being opened to puff up. Even though it is hard to admit to myself, let alone to you readers, I have lived my life even my adult life as trying to prove myself. In my first marriage, everything had to be perfect. My children had to be clean at all times. If they played outside and got dirty, they got a bath and clean clothes. If my husband wanted to do something on the spur of the moment, I had to make sure the house was in tidy order. He and I used to argue about this quite a bit. Which was more important, he would say, me or the house. It didn’t seem that way to me, I just wanted it all. The perfect mom, and the perfect wife, a wonderful combination. My second marriage was me trying to be the perfect nurse-maid. I took care of my insecure husband. I made all decisions about anything that has to do with a marriage. I think I enjoyed this power of knowing I was making everything right for another person. I was healing him, right? Wrong. It destroyed me. It wore me down, and in the end, it made me feel more unworthy than in the beginning. The marshmallow still remained in the bag, untouched. All my life I wanted to puff up like the marshmallow, and never got there. I am fifty-eight years old, and have lived over half of my life. I know the reward is to know God, and sit by him in heaven, but I still wanted to succeed in my life. I wanted to feel needed and worthy. I wanted someone at my funeral to say she is going to be really missed. Do you remember that time she made such an impact by doing so and so? I started writing. I wrote about my life and the journey I travel, taking care of my brother. I have tried writing a funny one, and even ventured into the fictional writing, using one of today’s big problems in the world. I have been able to write, placing myself in another person’s shoes. My first story I wrote for the world to view, I received a comment. One of my first followers was Bird. I still tease her today about being my first! More and more comments came in, and I clung to them, and took them to heart. People were liking what they read. They were leaving positive comments. It didn’t matter to me if it was a quick note or a long letter, they were responding to something I was doing. The marshmallow began to move, wanting someone to take it out of the bag. I have had some really good advice given to me among the comments also. One recently was to open my eyes, that my brother, who is mildly mentally challenged, and I stress the word mildly, may also be able to use his mind to manipulate me into giving him what he wanted. I had bent over backwards trying to please him. After all, he is the sick one right? He, in his own mind could still use situations to his own advantage. He cries a lot, due to Parkinson’s, but he also cries to get his own way. Although, he is 57, his mind is 10. Thanks to a comment of advice, that I took, I was able to learn that he can be just like any of us, acting out when we want our own way. It took two days of constant battle from within myself not to give in on his crying binge, wanting me to apologize for something I had not done wrong, but I did win. He finally gave up, and I have now seen more smiles. I did something right. I didn’t let me heart do the work, I let my mind do the work. It felt good. I had succeeded in something. I had a goal, and I completed it and won. As the comments started coming more and more, I realized that I was already a success. Not maybe in the

Marshmallow (Photo credit: Wikipedia)

writing area, but a success in my own right as a human being. People opened my eyes and reminded me that God loves me and that I am alright just the way I am. I don’t have to keep trying to prove myself. I am not completely healed. I still count on the comments, but I am relaxing some. I may never be a published author, and I will never be president of anything, but I can be the marshmallow roasting on the stick. Being prepared to be accepted and enjoyed by other human beings.

These Four Walls

Managing emotions – Identifying feelings (Photo credit: Wikipedia)

Have you ever got so upset, and let someone else’s words hit you when you could have left it slide off your back? Do you ever think that the people who will support you the most emotionally are your family? I am guilty of this right now. I had no intentions of writing a second blog today, you all put up with enough of me in one blog a day. I had such a nice morning. I got up quite a bit earlier than Al. I had time to sit here and drink two cups of coffee and write a blog before he ever rose from slumber. It was like being in a second heaven. Now I have my nerves dancing in my middle, and I have made two trips to the bathroom already from nerves. I have a slight pain in my neck from stress, and I have smoked more than I usually do. Al got up, and was quiet. Sometimes this irritates the crap out of me. Don’t ask me why, I have never analyzed a lot of my feelings. Maybe some day when I have enough time for myself, I can do this. He didn’t respond with a hello, or anything. Maybe I am a figment of my own imagination. So he goes about his routine of fixing his breakfast, and doing his morning things. I had an errand to run so he knew that we would be leaving soon. Before we left, family  texted me to see if I was home. I thought maybe they were going to come down and redo my bathroom floor. It has been emptied out now for a few days waiting to be done. Family did show up soon after. I don’t know what they wanted as they stormed out of my house before I could find out. It is a common thing here in our house. Al ignores me all the time. I am the devil in his eyes. I want to believe that he loves me, but he doesn’t really. In his eyes, I am his mean father, the one who was mad at him constantly, depleted his confidence in himself, ignored him. This is who Al sees in my every day. You can not imagine how it rips me a part and twist my emotions realizing that I could place him at any time in a facility, that I know he is my brother, my flesh and blood, that he and I had never bonded when we should have as children. He was the special needs boy and I was going to be alright. I put myself out for him every moment of the day, placing his needs above mine. Don’t get me wrong at all, I love caring for my brother, but I could have chosen the easy path, and had a better life for myself. I have had to put up with a lot. Lies, stealing, hitting me, threatening me, many trips to hospitals, psyche units, doctors upon doctors, caregivers. Just seeing what I have written makes me tired. I am able to do all of this because of my love for him and God’s help. The ignoring me, pretending I don’t exist, sometimes making me feel like I am inhuman is the worst. If we have any company, family or friend or stranger, Al is right out here. Ready to be in the conversations, say a good joke, make sexual remarks, make adult remarks, tell anything and everything that goes on inside these four walls. The conversations we had yesterday about the way you talk and treat ladies, was brought out in the open as soon as family got here. I looked straight in his eyes, and said not now. He argued. I raised my voice a tiny bit, and said firmly, I don’t want to talk about this now because it is private and others are here. He continued to argue, starting his crying routine. It made me mad that he was pulling this crap again, in front of others. Maybe I am selfish, but I would like to have family here and be able to pick and choose conversations, to be able to decide what atmosphere would surround us. I don’t like someone barging in and demanding to take over. I finally pointed my finger at him and said, go to your room. You are arguing and I asked you to save the talk, and you are not hearing me. My family got up and stormed out, but didn’t leave without telling me what a mean person I am, and that I have no gentleness in caring for my brother. I wanted to scream. I wanted to pick up rocks and start throwing them. I wanted to run after them and push them down on the ground. I think that all of my frustrations that build up each day, and the fact that I have always believed that I give and give of myself, all came to a screaming halt. I wanted to defend those remarks, to say I am a good girl. This goes way back in time, when my sister was born. I always heard how mom HAD to come into a ready  made  family. I always heard how she only had one daughter. I did so much in my life to prove to my parents that I was worthy of loving. This is making me choke up as I write this. This is probably the most painful thing I carry in my heart. I have lived my life trying to please others. Begging to be heard, to hear the words I love you. One time when I was 18, I moved out of the house. I know my parents were upset about it, but I thought I knew it all, but when my mom told me she could never love me as much as she did her own daughter, I carried that pain with me for the rest of my life. I realized than, in that moment, that I could do all the work around the house, make suppers, and it would never be enough. This is the lesson I learned, this is the only thing that stuck with me, I was never going to be good enough. So when my family let me know this morning that I am not good enough or kind enough to care for my brother, that maybe I should consider getting a REAL job, the memories and the  pains came racing back to me. This has caused the domino effect. Twisted stomach, temporary depression, feelings of never being wanted, trips to the bathroom. I sit here now in a low state of mind, knowing God will pull me up once again, but until I get there, I am in emotional pain. All from one’s point of view, who has never cared for my brother, or who has never stayed with him, and the saddest part, is no one, unless you do what I do day after day, really knows what goes on behind these four walls.

Understanding A Sister’s Love For A Brother

With Al receiving his new Candy Apple Red scooter, I have spent my morning redoing my house to make room. I guess it is officially spring, so I can combine two goals in one. I can sure tell  my body is getting older. Pieces of furniture I used to be able to scoot or sometimes actually pick up, I can no longer do. I use every main muscle to scoot, shove, pant and groan to get it moved one inch. I started with Al’s room, by changing his bed sheets, having him stay in there in case he would like to help, but no help was offered. After changing the sheets, I saw piles of news papers on his bed. I questioned him on why he was saving them in here, and also asked him why I had been noticing that he was taking the papers to his room to read. He had always read them in the living room, but I have noticed he has been giving up his routine of watching his favorite TV shows after supper, taking the newspapers to his room and staying in there. I should have known something was up,but because we have not had some of the issues from years ago, I didn’t put two and two together. One of Al’s mental issues is women and naked women. I understand the whole concept of everything, and also don’t mind if he has a magazine or two in his room for his private times, but he doesn’t do this. As I started going through some partially empty bags and papers, I found that he was hoarding again. He had been saving each newspaper that had a picture of a woman on it. Every ad that was promoting women’s clothing. He had a huge stack, and was hiding them in empty bags, boxes, anything he could find. We have an issue first with his room. His room is very crowded, including walls, floor corners, wall to wall, with his coca cola collection. There is no where else on the walls to even place one nail. I have done my very best to accommodate his wishes on hanging on to each piece of collection, but his room is only so big, so now with saving every paper he can get a hold of and any sacks, boxes, bags, the room is now unsafe, for his unsteadiness. I hated to do it, but with him being in the room, I had to explain that we could not keep this amount of papers, boxes, bags, as it was much more risky for him falling over something. I brought a huge trash bag into his room and making sure he was watching me, I cleaned out the bedroom. Storing some glass items in his boxes, throwing away the papers, and other empty containers. I talked some about how God would feel with him looking at women in an untasteful way. He began to cry and I knew I was hurting his feelings, but sometimes talking to him about God’s wishes is the only way to get him to understand . You may think that I do not understand, or I am being mean. but in earlier postings I have explained the tiny snow flake becoming a huge snow ball with this. It causes him problems with himself, the law, and other people. I have to stop it once again before it grows too large. I have also noticed that when we are all sitting around the camp fires at night, his chatter becomes more adult. I understand that he is trying to fit in and be accepted in his own way, but he will more and more use distasteful language about women’s chests, or use the word freaking, when I know he wants to use the more ugly word.He has been talking about beer and alcohol. I don’t know for sure what is going on, but I do notice it and once again I talked to him about hurting others feelings making comments about their chest, especially when they are sitting right there, and that there is no alcohol allowed in this house, period, so I don’t want to go in that direction with his talk either. Yes, you probably would not enjoy living with me. I try to live with God’s rules and not society’s rules. I never want God to pay me a visit, and see anything here that I would want to run and hide it away from his eyes. Al and I finished his room, and then I tackled the living room. Sweeping, cleaning off window sills, rearranging furniture, so that he can ride his scooter in the house. I am pooped now, so I took the break time to write this blog. I am finishing up laundry and I still have to sweep the rest of the living room and place clean sheets on my bed. I fixed Al’s lunch and am taking a small break.

Last night, I was like a concerned mother hen. Al took his scooter and took off for a ride. He was gone for some time. My mind started to wonder, as I realized he does not know his phone number or address, but I relaxed some when I remembered I had placed this information in his wallet.He was gone for about an hour and did come back. Yes! He was home, back with me again. I was relieved. I asked him if he had a good time, and he nodded yes. I asked him if he missed me, and he smiled and said no. I looked at him and I told him I didn’t miss him either, and then we both laughed because we knew we really did miss each other in just knowing that if help was needed, we each were a hand length away.

A digital picture of a candy apple, taken by Loui Andary, DaemonDivinus 2005-09-24. (Photo credit: Wikipedia)

The Lesson In Life

Parkinson’s disease (Photo credit: Wikipedia)

Once again I awoke to sunny skies. Summer is near and our spring is beautiful.God is all around us, just look at the birds, and the new leaves on the trees, the flowers popping up. Beautiful. Today, Al awoke with a smile on his face. Yeah! It was going to be a good morning. I had to take him to the doctor today, for his lab tests  that he had done last week. It was nearing time to go and I asked him if he was going to change his clothes. He shook his head no. I told him we must always change our clothes each morning. I think this is the dementia, because  he doesn’t seem to understand the clothes changing any longer. He would wear the same clothes daily if I didn’t say anything. We went to the doctor, and the lab tests all came back good. The sugars, the doctor said were on the high side. I was surprised to hear this. Me, being a diabetic, I know the good numbers they should be at and they perfectly, should not be over 100. I asked the doctor, what were the numbers. He said 101. I just smiled at him and said nothing. Everyone goes on a scale in numbers. I am surely not going to worry about one point over the normal. I wanted to laugh out loud at the doctor, and the world,and anyone else that would listen to my howls. I get so sick and tired of each of us being put under an  umbrella scale. We are each individuals, our bodies working for just us, not for the whole world. My sugars run on the high side according to the scales. If mine are under 150 at bed time, I can almost guarantee, they will go so low through the night, that I have actually crawled to the kitchen to find food to bring them back up. I do not like this happening to me. It is scary, I have no one to call to help me, so my sugars run around 150 or a bit higher, if I cheat. Each time I go to the doctor, I get scolded about my sugars, I listen, but I know my body better than anyone else, so I do what I think is best. At the end of the appointment for Al, I asked the doctor a few important questions about Parkinson’s, and he said to me, he is not a Parkinson’s doctor. He knows nothing really about it. I was shocked, to say the least. He has been subscribing medications for something he doesn’t know about? Wow. I discussed having him sign a paper for me to send to Hospice, so I could get some help for me. He told me that Hospice liked it if they had a patient that had six months to live and he didn’t know about Al’s time-table, so the answer was no. I asked him for suggestions for me to get out, and he said call home health care. I did have two caregivers, one quit, and one only gives showers, so I am back to not getting out by myself. I wonder what other people do in these circumstances. I had checked into home health a couple of months ago, and the charges they would charge us were almost twenty dollars an hour. We can not afford this on a regular basis. I guess God is going to have to take care of this for me. I need a mate, or  husband, or someone who can be here for me and Al. So, today, I got a lesson in life. Doctors can and will prescribe medications without knowing the disease, and it is hard to get part-time help, because all want full-time hours. We went to his favorite place for lunch after the doctors, and he was still in a good mood, calling people by short names, like Bec, instead of Becky. Waving to everyone. When he had his visit from his mom, it has had a long-term effect on him. That was Sunday and today Tuesday he is still on a high roll. I am happy for him. When we got home, I stripped down a child’s rocker for my son, and tomorrow, I will start the sanding process and stain it for them. I used to own my own antique business, so I love working with woods. Al is napping, and all is well for this day. Thank you Lord

Double Meaning

Today my brother got up for breakfast, and then returned to his room, which is usually pretty common on Sunday mornings. He reads his Bible most of the morning. I stayed out here in the living room and wrote a couple of blogs and answered emails. I knew it was a double meaning today for the two of us, but I couldn’t bring myself to bring anything up for fear I would be the one this time to cause the tears to fall. I made plans for Al and I to get out of the house for lunch, so we would have a break from my cooking and also from my thoughts I had pushed back in my mind. About an hour and a half I went into Al’s room to check on him. The lights were off and he was sleeping. I found this quite odd, as this was not in his routine. I thought to myself, oh no, he is not feeling well. He heard me tip toe in and raised his head a tiny bit off of the pillow. I asked him if all was alright, and he said softly yeah. I said alright, I was just checking, since you don’t usually sleep at this time of day. He said he wanted to be left alone. Hmmm. I reminded him that we were going out for lunch today and left him alone. I went back in two other times, and he was still sleeping. I knew in my heart, something was not right. The last time I went to check, I told him it was time to get up so we could leave. He didn’t move. I gave him five more minutes and then reminded him again. He did get up this time. He looked alright, so we left. About a mile down the road, the truth finally came out from his eyes. Tears started softly falling, one eye, than the other eye following. He started to talk, but the words were so soft, I had to ask him to repeat himself. He said I miss her, and then the tears fell more quickly. I miss mom, and today is her birthday too. Oh wow, I pulled off the side of the road, and said nothing for a moment, trying to compose myself as I had known these two facts since rising this morning. Somehow, I was hoping that the dementia would be here today, but it wasn’t. I told him I missed mom too, and I knew how he was feeling inside. I touched his arm and told him I loved him, and that together we would get through this. He just shook his head up and down and kept crying. I gave  his arm a squeeze as if somehow this would make the pain go away. I stayed put for a minute, and then we left for the restaurant. I thought this distraction would help. We went to dine and the whole way through the meal, he sat in silence. All of a sudden he could do nothing. He could not pick up his silver ware, he could not open his napkin. I helped him and finally he began to eat. We left early, as I knew this had been a bad idea. When we got home, he talked about mom quite a bit, and then grew very quiet. He then said, I am going to see God, and left for his room. I am sitting here, sharp pains racing through my heart, as I knew he is grieving and so am I. Help him Lord. Pick up where I left off.

Mom Sangwal Mahidol na Ayudhya with Mom Chao Galyani Vadhana and Mom Chao Ananda Mahidol (Photo credit: Wikipedia)

His Way Of Thinking

Coca-Cola (Photo credit: Wikipedia)

I woke up to blue skies and a chill outside. God has truly made a beautiful day. I woke up late, and my brother was already awake, as I noticed his bedroom light was on. I poked my head in and said good morning brother, did you sleep well? He looked up at me and nodded yes.He was deep in turning the pages of his Bible. I have nothing to say negatively about the bible, just noting that ever since Al had the conversation with God, where God told him he would receive a sign when God was going to take him home, Al spends most waking hours in his word.  If you remember from prior postings, Al is obsessed with coca cola. He spends many hours reading his price guide books and holding coca cola items on his lap and others are sitting on his bed waiting for him to pick them up. He has turned away some what from those items and I always see the bible in his hands. I can not even pretend to know what is going on in his mind. Nor can I even say I have any real feeling of understanding the conversation he and God had, but I do know at this point in his life, this is a wonderful thing. I want him to be able to cling to this hope that he has. I believe it carries him through each day. It is his to own and no one can take it away from him. He wanted eggs for breakfast, and I told him I would go get them ready. I have always bought him frozen breakfast items for breakfast, only for the reason that it keeps his independence. He fixes his breakfast on his own, and I believe this helps him to keep a hold on his pride. After his teeth were taken out Tuesday, he has been on a soft diet. Today is Friday, so I just knew he wanted me to quit making his breakfast meal and he would have his french toast sticks, that he loves. Today is the day, he can go back to his routine, but he said no, he wanted eggs. I am not sure if it is the eggs he really wanted, or the fact that this is another small way that I can show him I love and care about him. I think it is the later. I am finding that I may be wrong. He does want me to do some things for him. This is fine with me. I am the type of person, that I also like to feel needed also, so it is equal on both sides here. If you know anything about mental illness, you will understand what I am about to say, and if you don’t, one thing that is common with mental illness is routine. After breakfast, I went into his bedroom to change his bed sheets. This is Thursday, so we change bed sheets unless there is a death. It is what it is and there is no changing it unless you want arguments and tears, and I definitely do not want to be the one to cause this. He does enough of this on his own with his Parkinson’s. I notice that is dementia is ever more present each day, as there are books and coca cola lined up neatly on his bed. This starts at one end of the bed and continues all the way to the opposite end. It is as if he has already placed in his mind, his whole day, which book to start and end with. Which collection piece he would pick up. Al can tell you about an item he has, and he can tell you on what page it is found in which book, and has the complete details memorized in his mind, so I knew there was great planning in this. I reminded him that this was Thursday. Did he want his sheets changed or maybe I could come back later on in the day and I could do it then. He seemed a little startled, as he realized what day it was. I watched as he lovingly picked up each item, and I am talking about maybe fifty items, and placed them on the floor and in  his recliner. I have always known about patience, but I have been taught by God the true meaning of patience, as I stand by knowing my coffee was getting cold, and I had not eaten breakfast myself yet, waiting for him to do what he needed to do. The time now has come and I take the dirty sheets off, and I start putting the new ones on. He tries so hard to help me. He grabs one corner to put on, but isn’t strong enough to do this and he falls into his bed. I tell him this is alright, I appreciate him trying and that I will help him. I see his face wrinkle and a tear start to fall, and I go to him and give him a squeeze. I tell him it is so important to me that he is still willing to help when he would rather be sitting or lying back down. He gives me a tiny smile. I make a deal with him. I tell him if he wants to take the dirty sheets to the laundry area, that would be a big help to me, and then I will finish his bed. He liked that. So the sheets were changed and all worked out. I gave him his privacy back, and left the room. I started his load of laundry and as I was at the washer I peeked in and he was very carefully, with much love, placing his precious coca cola books and pieces back on the bed. I swear they are placed in the exact order that they had been placed earlier. I will never be able to understand the mentality of his mind, but I know what is important to him. He is able to count on me and he has his love of his life, coca cola surrounding him all the day long.

Not Giving Up Yet

I took my brother to the doctor this afternoon. Before, going there, we stopped at his restaurant, and he had a chocolate shake and cottage cheese. What a combination, right? Well, with his mouth gums still having stitches, whatever he wants that he can eat, is alright with me. After eating, he had to use the restroom. The restroom is at the back of the store, behind the door. I would not be able to keep an eye on  him by letting him go alone, so I went along, and as I got to an area where I could watch him go on his way, I stayed back. After he was finished, and had walked back out to the public area where all were sitting, Al decides to pull a child-like trick on me. He says in a too loud of voice, why do you have to follow me everywhere I go? You watch me like a hawk. Do you think I am going to steal something? I said calmly, with my cheeks starting to burn, I watch over you, not to bug you or frustrate you, but because you fall too easily, and I don’t want you to fall and me not to know. Then he repeated his question again, causing looks for the two of us and started in with his tears. For the first time, I felt like somewhere in his child-like mind he was doing this on purpose. Trying to make his point, that he didn’t want me to watch over him, and hoping by humiliating me in front of others, he would get his own way. I was getting a tad bit angry at him for this unacceptable behavior. I told him we were leaving now and I sat and waited for him to get his jacket on. He tried, and then yelled at me, aren’t you going to help me? I told him I didn’t want to treat him like a baby and wasn’t WATCHING him, so I didn’t know he needed help. He just looked at me, and I knew he was mad at me, but I was angry with him also. We went to the doctor then, and found out his foot is alright.The pulse is there and all is good. Doctor said I could take him to a dermatologist, if it the toe nail continued to turn gray. He gave him a prescription for depression. It will take six to eight weeks to start working. I try to stress to the doctor that I need help NOW. That Al talks about wanting to die, and doesn’t eat so much any longer, and point out the fact that he has lost too much weight in the past three weeks. He tells me this is just the parts of Parkinson’s, and I should be getting used to it. Hmm, reminds me of yesterday’s comment that upset me so much, get over it, get used to it! I have called Hospice to see about getting their help, but they tell me Parkinson’s is not an end of life situation. While standing in line for the prescription to be filled, one of the pharmacists that knows us well, started talking to me about Al, and I told her what had gone on at the doctor. She told me the doctor can talk to the Hospice and it can make a difference. I need help, and I am admitting it. I do not want Al to sit here and die from depression. Eight weeks are a long time for me to sit back and watch his swearing, slowing of eating, the anger, arguing, and tears, and non comprehension. I am not going to stop Al from his feelings, and if he truly wants to die, I will not stand in his way, but there has to be a more dignified way of handling this then hoping for some miracle drug to work after eight weeks, only to actually hide the real feelings. I am going to call Hospice again tomorrow. I am not going to give up this easily. One of these places is going to help him and I get through this.

The Doctor, by Sir Luke Fildes (1891) (Photo credit: Wikipedia)

Please God, Please Guardian Angel

Guardian Angel, German postcard 1900 Deutsch: Schutzengel, deutsche Postkarte um 1900 Polski: Anioł Stróż, niemiecka pocztówka ok. 1900 (Photo credit: Wikipedia)

I don’t even know how to start this story. Is it even a story or a cry for help, I don’t know. I had the wonderful birthday party for Al. I ignored the fact that he didn’t stay too much out with his company. I ignored the fact that he spent most of his time in his room lying on his bed. The smiles that he wore at his party, I wonder why they can not be worn at all times, or at least more often. Sunday, I talked about a peace here in our house, but is it a peace, or is it a mixed hell of swirling thoughts of death, fear, and anxieties, all having brought nothing but a doom that lay heavily inside these walls. Is it quiet, because I don’t know the right words to say any longer. I have no more simple answers to buy time with. When am I going to get real about this situation. When two people can not speak for fear of watching tears fall, or needing to say they wish for death, how much noise could there be. Today, being Monday, I had nothing really planned, except staying home and reading bloggers stories. The caregiver came here to shower him, and as soon as they got behind the closed-door, Al let loose with his tears. He talks of his fears of dying. He can see the weakness his body is going through. Can I lie to him and tell him that this is not true? Is he a fool and will not know I am lying to him? Yes, he knows his legs grow weaker. He sees that to use a fork or a spoon, is a very hard task. After his shower was over, and the caregiver had gone, I decided he needed to get out of the house. I told him we would go out to eat for lunch. He got his shoes on and he came out with no smile. It wasn’t that he didn’t want to go, or if he didn’t want to go, he said nothing, or maybe he just doesn’t care anymore. He told me he has nothing to live for. This used to make me so mad when people would say foolish things. We have so much to live for, don’t be ridiculous! Now, that it is  my brother saying it, I know he truly feels this way. In his eyes, the things that he enjoyed the most, have been taken from him by his illness. I said silly things, that sound off the wall, as if I was talking to some young child, trying to get a smile out of him, but it didn’t work. We went to the restaurant, and he struggled to get in the chair. We were there for about forty-five minutes while he tried to eat his sandwich and fries, the slowness of movement, mixed in with tears. I should have stayed home. Why did I take him out. I thought I was doing him good, but maybe not. I see what is happening and I don’t want it to. Depression. It has been coming for a couple of weeks I think. I helped him stand up when it was time to go. He wanted to finish his drink, but today he struggled with his straw, so I helped him. Al is almost a foot taller than me, and in just that short moment of finishing the last liquid from the glass, he had gotten down to my height, from his weakness and legs buckling. I told him to stand up straight, buddy boy. I laughed and made a joke that I didn’t want to have to pick him up off of the floor. That went over like a limp noodle. The tears started flowing harder. I am going to die, i can feel it inside of me. This is what he told me from my so-called funny little joke. I don’t want to say anything anymore. I don’t want to hurt him anymore. I want to just shut my mouth, but the silence coming from both of us  is overwhelming, and I can’t follow through. I sat thinking in the car on the way home, what can I do or say. How can I stop this. Suddenly, I threw out THE question. Do you want me to call the minister. He said nothing, but shook his head up and down. I think I wanted him to say no. I wanted him to say he was going to be fine, this was just a passing moment. Don’t call, but he said yes. I love this minister, but my whole thinking shifts when I think of a minister coming to my home. I went through this with Dad also. Memories I don’t like to be reminded of. When we got home, I placed the call. In less than an hour the minister was here and anointed him and also the room. I don’t know the words that were said. I did not want to go back into the room, as I felt this was a private moment between minister, Al, and God. When all was over, the minister and I spoke for a few moments and then I bid a goodbye. I have now called the doctor as I fear the depression could take him over the Parkinson’s and dementia, the heart problems or mental handicaps. The minister prayed for Al’s guardian angel to stay near him. I have checked on him before starting to write this, and all lights are off. He is lying on his bed still awake. Please God, please guardian angel, take good care of him.