Sunday Morning Avenue


I am almost afraid to write this mornings journey down for all to see, as I am afraid. Afraid that friends that think I am a good person, will no longer think this. That you thought I was unselfish, and now you will think I am selfish. I know I am not supposed to worry what others think, but being a stay at home sister, taking care of a man whose tremors are too out of control, I have come to lean on my friendships  with all of my readers and followers. You see strength in me, and this makes me feel good, but let me tell you, there are days like today, that my body feels like old, fragile paper, from a hundred years ago, kept in cellophane wrapping, and now has been taken out of its wrapper, and toyed with. Emotions are flying inside this house right now. From one end of the house there is sobbing that I hear, words of what we would call pity, but I don’t see them that way. I see them as  he is calling the shots, the end is near. At this end of the house, I feel a broken heart. Something has ripped through it, piercing it head on. I feel anguish and despair. I feel defeat, as I didn’t carry out his wishes. I feel some guilt, because maybe I didn’t give it enough time. I feel a huge loss, for his misery has become mine, his sadness has inflamed my soul. The helplessness that I often feel, is no longer a stranger to me, when it comes to having hope that all will be well in time. The sun is shining, and there is a chill in the air, like early autumn. Hope is the word for today. Last night, my brother told me he wanted to go to church this morning. I tensed up inside. The weekly argument within myself, is a battle I don’t seem to win. I want to please him, but going to church is not a joy anymore. Each week I take him, it is early enough, that he is quite stiff in his walking. A blank look is spread across his face. No emotions come from anywhere unless you look below the neck and see the tremors very much alive. When we go to church, the first song he hears, starts the flooding of tears. He tells me after church, that the songs remind him of mom and dad. There is triple speed of tremors, constant wiping of tears, until his eyes look like an old dogs bloodshot eyes. There is loud mumblings coming from his mouth, telling all who are near, that he hates these tremors. They are taking over his life, and they are going to kill him. With this all in mind, I still tell him, we shall wait and see how things are in the morning, then we will decide whether to go or not. This morning, he doesn’t wait for me to say anything, he gets dressed in his Sunday clothes, eats his breakfast, and then sits and waits to go for an hour. I get my shower, have my cup of coffee, eat my bowl of Cheerios. The time has come. Without any discussions, I get his walker in the car, and I walk him to the car door and help him in. We leave, with no conversation between us, no smiles on either faces. All he realizes is that he always went to church on Sundays. This was his routine, and so nothing will change. Tense is how I feel. Trying to be hopeful, asking God to get us through this. We get to church. I get the walker out. I get him out, and we get to the front door. Smiling greeters welcome him and me. I say with my pasted smile, good morning. He says beautiful day, I nod in agreement. He then says good morning to my brother. My brother says nothing and still no smile. We go in and find a place to sit. We are alone in our seats and then a lady sits next to us. She takes the attendance book out of the pew and signs her name, and then asks my brother if he has signed it. Big mistake. I assume by this question, she hasn’t noticed the triple tremors. He tells her he can’t sign his name, his stupid tremors won’t let him. He turns and looks at me, and says too loudly, why is she asking me to sign my name. She knows I can’t sign my name. These stupid tremors are going to kill me! They are going to end my life!. The lady gawks, and moves over a seat. My brother says, see? she doesn’t like my tremors either! Tears start flooding  once again. nose is running, words are spoken. I stand up, and I tell him , come on, we are going home. More and faster tears. I repeat myself, helping him to stand at the same time. I said again, let’s go. This just isn’t working out for you. We can go home and watch a church show on TV. I guide him out of the church. The smiling usher says on our way out, Oooo is someone not feeling well? I felt like he was patting a puppy on the head, saying nice puppy, nice puppy. I said no, someone is not feeling well. I put the walker back in the car. I place the teary eyed, tremor filled, man in his front seat. I close his door, go over to my side, open my door, sit down, shut the door. Start the engine, and leave. All the way home I hear, I want to die! These tremors are going to end my life! Stupid tremors! I park the car, and swear to myself that this is it!! No more church until things change. There are good programs on TV he can watch. He can listen to his MP3, that is preloaded with the New

Siblings

Siblings (Photo credit: Phillywrite)

Testament. a gift from a dear friend for him. It is over, I lost the battle to Parkinson’s. It is truly leading our lives in every way. My heart starts to bleed once again.

37 thoughts on “Sunday Morning Avenue

  1. i am so sorry for what you are both going through. it is such a wicked disease. it doesn’t sound like that church is very helpful either.

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    • i think because of the sadness and memories the music brings, and his own personal hell he goes through with this disease, i think staying away from church is a good thing for now. u r right, church is not a help as of now

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      • it’s hard when you want to do what’s best for him and, you kind of feel damned if you do and damned if you don’t…

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      • you are exactly right. i want to please him more than i usually do, because i know his day of walking and moving is nearing to sad days for him, but when it makes his life more difficult and sad, i can not bear that either………thank u for understanding this so well……

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  2. You have *not* lost the battle this morning Terry..God hears your heart..God comforts..he heals..even though right now these are trying times..he loves you too much for you to want to give up..His love is *carved out* Terry..just for you. And for your brother.
    Right now I pray that whatever plan the enemy has for you..the ideas he’s planted to make you seem like you can’t do this..be removed. I don’t care what he has to say..You belong to GOD. I’m always praying for you Terry..

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    • thank u apple. i pray that God brings my brother peace. this is all i want. i want his tears to stop, i want his talk of death to stop. it is so hard. i want God to hear me, hear my cries for help. I don’t understand why god is waiting to answer. i am sorry. i should not be saying this, god is perfect. this is my pain speaking for my brother. thank you for your prayers apple. u r so genuine and loving. i lean on your words

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      • i am confused. i don’t know for sure who i am asking the question of award placement. i thought it was apple but maybe not. hoping someone can help me please?

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    • is there any way you can explain in baby talk terms how i place my awards on my profile page? i just can’t seem to do it? i use the text widget, write in the name and copy paste but when i go look at my profile page, i see nothing………thanks apple

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  3. Hopelessness is a terrible feeling – the feeling that there is no ending … no future … no light in the tunnel. That is the feeling that makes us give in … even if it’s only for 5 minute or a couple of hours. Then this drive in us comes back .. and we are back in the race . Went through it so many times during my cancer treatment – and here I’m on the other side. Have my demons that I have to dance with .. have my dramas, but they are mine and I can decide if I want to dance or not. You’re in a total different seat – and I think that you have to give yourself more freedom to dance. If something happens to you … what is going to happen to your brother. There must be help to get.

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    • i have tried so many organizations and even the government help. their answers are the same. parkinsons is not a life ending disease. there is no help for this. i can not get hospice to help, there are no support groups under an hour drive for parkinsons. it just upsets me so much to watch him suffer while people pretend this is nothing serious. it is ruining his life, eventually making him home bound, is this not serious? if its name was cancer it would b a different story

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  4. somone told me yesterday to try a web site called care.com. i am going to look into this. i need someone who can come stay with him through the week day hours, so i can leave and run errands for a time

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    • Good for you …. Your brothers illness will make him home bound, but it should make you give up your life. Know that cancer has massive support and it’s because of the treatments and the support. Every 5th person will get cancer of some kind. Terrible truth and not all of us will survive. Terry, I’m so happy that I live in Sweden and proud over the services and support we get … for your situation would have been so much easier if you lived over here. Not fare. You search for help where ever you can get it.

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      • i will keep looking. there has to be someone, somewhere. thanks for your words of support. i, too, wish i lived there for his sake. i hope your cancer is in remission or gone for good!!!!! i do not want to pry, but if you wish to share with me i am here

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      • Thanks Terry, but I’m tired of talking about it. My doctors told me that I had to talk about it … that I had to warn friends and family that I will talk them to death about it … and then one day I will be so feed up talking about it and then I move on. And so it was – reached the point that now it has to be enough and I moved on. Wonderful feeling.

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  5. I am so sorry for my fellow Christians who aren’t taking the time to really see the struggle that you and your brother are going through. I often miss church due to my health problems, and I understand how you feel. When I go, I try not to let people see me struggling with the pain, or walking with my cane. No one has called to see why we are missing, not even the choir director. I wrote him an email this week to say that I was sorry for missing so much and why. His response was a shocker to me, because his wife has the same illness as I do, and he knows why she misses. His response to me was…”Oh my, I didn’t know you were going through all this.” Funny thing is I had talked to him and his wife about it many times to let them know I understood what she was going through, and their children are my daughter’s best friends. So often we go to church and really don’t get involved in the lives of those attending the same church, and I am so sorry for that, because that is the whole purpose of going to church…to find those of the same faith that can help us and that we can help along our walk with God. Like you in the past I have been a caregiver…to my father-in-law who h had alzheimers and prostate cancer. It is hard and without a good support system it can be a strain that makes life impossible for us. You are a special person to take this on, and I know that you are doing it for the same reason my husband and I did…love for that person we cared for. God bless you, sweetie, and may the Lord open doors for true Christian support and compassion for you and your brother. Remember the church is the Lord’s house, not those attending there, and if your brother feels the need to be there, you have every right to visit the Lord in His house, and anyone who makes you feel unwelcome or uncared for will be dealt with by God for it. Go boldly, and don’t be embarrassed or downhearted by it. But if you feel it is better for you all at home…check out sermonaudio.com They have recordings of sermons from churches all over the world, and from many different denominations. I’m sure that many would speak to your heart and your brother’s too. You have my prayers.

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    • since i last replied to your comment, i have reread your reply two more times. i found myself placing your shoes in mine. i question the people in the churches. something has changed. when i was growing up, there were many people my family knew and us kids would visit often at each others homes. people knew where we lived, the work of my parents. today, we walk in the same doors week after week, no one do we know, no one knows my brother’s health, all is different. somehow through this, i am closer to God than i ever was, maybe it is from taking care of my father and having him pass away in front of me. maybe it is my brother’s illness. i don’t know the answer, but i do know i can not live each day without him. you are a brave person to go to church with your cane, not caring that it is something that not all carry. my brother is very aware of all his surroundings. he is also mentally challenged, and he remembers what he used to be like, so he gets very nervous and feels much shame. i wish you and him knew each other, and he would realize a cane is a normal part of life, and God still loves us, and we did nothing to stand out in front of others as different

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      • I have to admit, I struggle with memories of how I used to be. I use to walk alot…hiked the Grand Canyon, played coed softball, could clean my whole house (3 floors ) in 1 day, and now not being able to do those things is frustrating. But I hold to the promise that one day my body will be whole again, when the Lord calls us home. I know that each day depends on my relationship with Jesus Christ, and I have to lay my weaknesses into his hands, because when we are weak He is strong. He uses everything we go through so that in time we can give comfort to those going through the same thing. My illness, pain, disabilities were the effects of years of physical abuse, but wallowing in blame for those who caused it isn’t going to make things better, and in fact, will only make the pain inside heart greater than the pain I suffer physically, so I choose to let go, forgive and let God be my strength. I understand your brother’s frustration, but he is trying and that is why he wants to go to church, because even in his weakness he finds strength in worship. Maybe it is time to talk to the pastor and share what is going on with your brother, and your struggles in caring for him. Maybe you could share with him how you’ve felt when attending and see if he can be a help. He may know others in church who would step up to be a help to you and who can be a barrier for your brother against those who can be shallow in their response to you both. Don’t give up until you try. But if his response is lackluster or defensive, then maybe it is time to move to another church. I understand how you feel, many churches have changed…not only in what they teach but in their whole attitude toward being compassionate. It’s the difference in “legalized” religion, and a “Christ-centered Christianity”. I don’t know if you have ever heard of Joni Erickson, but she at one time was an Olympic skier, but in a ski accident was left a quadraplegic. She had to learn to do things a whole different way, and although she couldn’t write, she has since written many books using other sources to aide her. She also has taken up painting and has done some beautiful landscapes. Anyway her story might be very encouraging to your brother and to you. She is a Christian, and been through much of what we are talking about. You might want to find one or two of her books and share them with your brother, even read them to him, so you both can open a line of communication about her experience that will be a blessing to both of you. I read the book about her accident and rehabilitation when I was younger, and when I get down I think to myself, if she can do it, I can. She was very inspiring to me.

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      • i have never heard of Joni, but will look her up. I fight the battle daily. I wake up strong, and I become weak over pity for him. I suffer from stress and sadness, knowing this is who I am not, I too, go back to the way I used to be and wonder when it will come again, but somehow knowing I will never be the same again. I am closer to God now than ever. I often feel that I am to go through this battle with him, so I can draw more near to God. You can never be to close to God. I feel like sometimes I am not good enough, don’t read my bible enough, don’t pray enough, and this is the reason my brother has no peace. I have been taught that I can not pray or read or do enough to be good enough, but when does it stop, and I accept that this is who I am? Nothing I could ever do would be good enough, for there is only one perfect person,,God. I will get this book and try to get my brother to read or maybe me read to him. If only he had Parkinsons, maybe his life would be calmer? He is mentally challenged, and this makes him non understanding of what I read or say sometimes, but I will try. Thank you so much for your words.I am rereading trying not to forget one thing you have said.

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  6. Terry, you have supported me and my blog from the start (not long ago) and to be honest, you are my only ‘regular’. Indecently, I haven’t even checked out your blog – until now. I don’t regret it at all, you have a brilliant blog that has only inspired me to blog more.
    Thanks for your support, Terry!

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  7. I can’t even start to imagine what your life is like caring for your brother. He seems to have given up the fight and that must be frustrating for you. Your post gives me an insight into how my husband may feel, what my words may be doing to him. On a bad day every question he asks my reply is death.
    Are you able to get some respite by other family members taking your brother for a while?
    Lastly, you weren’t selfish, you knew what the outcome of church would be: reminders of parents; tears; tremors; wanting to die. So when it started even before the service began, I can understand that you wanted to just get out of there.
    Please look after yourself too. Caring for someone else sometimes means you forget about yourself. Xxx

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    • i have no help. i have kids but they all work or live too far away. i do have a caregiver who gives him his showers.he does seem to have given up. with his mentality he just doesn’t understand why he has it and he blames everything and everyone. he carries much anger. you are right, i tend to forget about my needs but i am trying harder to remember me. thanks for being so understanding and caring

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  8. I am so sorry for what you and your brother are going through. mrscmonkey is right. Please don’t forget to take care of yourself.

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  9. It worries me that your life is passing by, when are you going to live? Of course when a loved one is ill you want to look after to them though. Can you speak to him gp about his state of mind? His state of mind is not helping you or himself, if he could get some talking therapy to deal with what’s happening to him, so he can let it out on someone else rather than you that would be great. If not his gp, what about his consultant? You UK? the way it works here is if you have an underlying medical problem as well as mental health issues, you get referred by your consultant to mental health team within the hospital who are accustomed to dealing with people with underlying conditions which may be contributing to their mood. (Other people who don’t have physical health problems get referred by gp to district mental health team).
    He needs to vent, but doesn’t mean to say that you have to be the one to take it. xxx

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    • my brother has been an MR since childhood. His father never accepted the fact so was verbally abusive to him his whole life. My brother has spent over half of his life in therapy with all types of doctors. Once they get to the father issue, the heart of it, my brother explodes, and there is no going forward. Now that mom

      and dad are gone I am left with the left over mess. I used to tip toe around myself watching what I said and do in order to keep peace. Now that his Parkinson’s has taken over his body, he is too weak to hurt me, but we constantly deal with any left over’s such as remarks, non positive about life. no facility wants him because of his behaivors. it is sad, because I am all he has left, and he has no idea how lucky he is

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  10. I am so sorry, dear friend! I know this is not any easier for you than it is for him. If you didn’t have some selfish type thoughts occasionally, I would be more worried about you than for having them. If you didn’t, that would only mean that you had totally shut down. You are not a robot, Terry, and the strain of what you are dealing with takes a big toll a person. Yes, your life becomes consumed with that care giving and you don’t have much time of your own. My heart goes out to you!! And your brother as well. When I cared for the lady in a wheelchair with Alzheimer’s, at least I could go home after my shift and escape the stress. That is what made me, as her husband called me, “so patient” with her. It wears on you and I think you do a fabulous job under the circumstances!! hugs and love, Terri

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