This is a place to write your inner most feelings, right? A place to come to when you can not say the words to your children, in fear of breaking down, and having your kids see you in a weak moment. To come here means I do not have to be criticized by others for not doing this or doing that. I do not have to be felt to feel small or stupid. Lord, I love this blogging site!
I have a huge headache today. Oh, it is stress, I have no doubt. I work up in a fairly good mood, considering my brother was being the obedient child, waking up earlier than usual because he can’t sleep well on Wednesday nights, because I am going to be entering his bedroom on Thursday mornings to change his sheets.
This is the only time I enter his walls of privacy, his comfort zone, his free to be whom ever he wishes, is to change sheets. Other than that, I only enter when laying clean, folded clothes on his bed, and then I make a quick escape in order not to cause tears or faster tremors. Yes, tremors from Parkinson’s tends to be worse when the patient is nervous or stressed out or even tired.
I am sitting here cracking up with laughter inside, as it is this choice or screaming and tears. He has been in a bad mood all morning. I almost wish for those good days to never come, then I will never know what the other life would be like.
He woke up and stumbled to the kitchen, refusing to hang on to walls, or chairs, because then he would have to admit, he needs more help than a cane. I can tell by his face that he is in the Parkinson mode. I know for a fact, he was up until at least three thirty in the morning, watching television, and he could have slept in, since he was tired, but it was sheet changing day! This is his choice, not mine, but it would not matter what day of the week, because I have no guarantees which days will be good or not, and if I mention the fact that we can wait until a better day to change them, he explodes, and wants to know what he had done wrong.
Sometimes I just want to curse and hit our father, for planting this terrible habit of doing all wrong. I praise Al to the ceiling, but he never believes me. He has been taught for over forty years, that he can do nothing right.
After sheets were changed and breakfast all cleaned up, I needed to pay attention to some bills I had coming due, and I wanted to check into a different company for our television needs. I had also made the mistake of telling Al that we would be running to the gas station soon so I could get my smokes. While I am on the phone and not quite ready enough to leave, he has gotten his shoes on, and told me while I was on the phone that he was going to go outside and sit on the porch to wait, I nodded yes, that I understood.
The box fan was sitting near the front door running and Al could not pick the fan up and move it, and he could not walk around it. It was stressful to him that something was in his way, and so he did the shuffle from his Parkinson’s and nearly fell through the door. I am watching this and still trying to pay attention to the words of the sales rep, and was about to get up and go move the fan, when all of a sudden, Al burst out with a big F You word. I swear the whole neighborhood plus the rep on the phone could hear. He was talking to his legs, that were frozen.
He gave up the fan and the move to outdoors, and sat on the couch and cussed. I am sure the lady on the phone heard all, or enough, because our conversation was completed quickly.
I decided at that moment to put all bills on hold, and take Al to the gas station to deter his mind from the fan, and offered to get him some lunch at a restaurant close by and bring it home. He walked out side and didn’t hang on to the rail, because once again, if he gets the extra help, then he has to admit he needs it. He walks down the four steps, and trips on the last one, and I catch him! I explain this is why we need to use both arms to hang on to anything solid, one hand on the cane, the other on whatever is there.
He starts crying and yelling again. He is telling me it is his fault he has this stupid disease. I am deciding whether to continue to the gas station or not, and then I thought, oh ya, I need my smokes more than ever. Not even going to think about quitting my habit for today.
I get him in the car and he is wailing and having the biggest pity party ever. I hate the pity party. I have explained like a broken record, that he needs to be thankful for whatever he can do today, but he never hears me. He is living in the moment, right now, what is happening with his legs now, his tremors, the day, the minute. There is no tomorrow, ever.
We get to the gas station and I run in and get my smokes while Al is sitting in the car gritting his teeth at me, because I refuse to play the pity partner game with him. I decide the hell with the restaurant, and I grab something from the deli here and I get back in the car. We left and I drove home. When we get home, he refuses to get out of the car. I can not leave him sit there, so I have to stand in the rain, and coax him like a baby to get him out of the car. Finally, he gets out, and I unlock the house, lock the car, and here I sit, writing my frustrations out to someone who will listen, not judge or condemn me and smoking.
So sorry it’s been such a rough start to the day, but nothing stays permanently bad nor permanently good, there’s always an inbetween point when we least expect it. I hope you find it today <3<3<3
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me too Kadeen!!!! me too
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that is so rough. i think YOU are the one who needs the pity party. i will bring the ice cream.
i have a brother with autism, and sometimes that frustrates me so much. sometimes i forget how lucky i am. thank you for reminding me of it.
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thank you for stopping my Brittney, and I love your comment. OH!!! i love butter pecan ice-cream too LOL
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I hate that ‘like’ button sometimes. But I agree with you, Terry, I do like that we can blog without recrimination. Hope it got a little better for you both.
XO, ~ Lynda
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me too, hope tomorrow is better
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Let your thoughts flow, my friend…writing is so therapeutic. Judgment-free zone here! Hope things get better today 🙂
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me too Brian, me too, he needs his good days back
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hun I just lit one up for you having just had the bedtime battle with my four year old. Sometimes it just has to be tough love and a lot of deep breaths
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you are so right my friend, for me, smoking helps
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I took my gran out for lunch on Tuesday with the four year old and if it hadn’t been for my lovely sister-in-law to be and her two boys looking after my son while I had to help my gran I never would have managed, in her case it is simply age but the pity party, I can’t’s, and complaints that accompanied something as simple as taking her out for her birthday lunch would give Al a run for his money so believe me knowing how tough it is for me on one off special occasions i can appreciate even more how much you cope with on a day to day basis anyone tries to tell you you shouldn’t smoke send em my way
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i will be sending them your way for sure, and i am sure it will b family!!!!!!!!!!!!!!
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Terry,
You are doing a very good job handling things as they come up. Not knowing from one day to the next what you are facing is a tremendous trial of your faith and patience. I realize that none of us know what the morrow may bring upon us, but this principle is magnified for you. It is not an easy road that you travel. That is for sure. And to be honest, unless someone has been a caregiver for those with late stage Parkinsons none of us really know exactly what you go through. My prayers continue for you and Al. The Lord is with you always.
I’m so glad you have found a way to express your feelings over the blog. It is therapeutic for you and helpful to many of us who do not understand the “ins and outs” of Parkinsons. By reading your blog it helps us to better know how to help and pray for those who are afflicted iwth this illness.
May He continue to bless you.
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god bless u my friend
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Terry, my heart goes out to you; I wish you could somehow catch it and feel better and have things be easier. There are some times when I think the the best thing about a day is that tomorrow is a new one.
~ Lily
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Lily, this is how i live…………one day at a time, and hope for the morrow………….thank you so much for being here for us
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I love yout truthfulness… and how you are handling your situations…I have heard and know…writing things in this manner is such a big help…Way to go Terry! ~mkg
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thank you Marilyn. i love being able to get it all out here…………….
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It is days like this that make you glad God gives you a new beginning everyday. You always have hope for tomorrow to be a better day.
Your day was a living H…, and it was raining to round it all out. I pray the rest of your day went better.
Your friend,
Ed
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The yelling and cursing has stopped finally, but the tears are still here. Hoping tomorrow is a better day.
terry shepherd tellmenolies2004@yahoo.com sugarplumbaby4you@yahoo.com facebook member
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Hang in there….Diane
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took him out to get ice-cream tonight. i think he enjoyed it, but did a lot of staring into no where
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What a terrible day – so glad you could write about it and let off steam – argh!
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it just makes me feel so darn frustrated that i can not fix one thing of all things in this place!!!!
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Are things better today?
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they got better as far as moods go, but the staring seems to remain more, it is like sometimes he isn’t here. know what i mean?
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I know exactly what you mean.
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Tilly, good for you … to not playing the “pity party” – but what a day … poor thing – love the way you think and the way I write about you hard and tough everyday. Al, maybe have Parkinson, but he know exactly how to play you at times.
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thanks to you pointing it out, i have wised up and have noticed how he can play me, and now there are times when he whines, i walk away. thank you for helping me to see this sweet Viveka!
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Good for you …. he are just an big child at time. Sure there is more times he really suffers from his illness – but reading your posts – there is more times he play you.
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hugs!
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