I am so angry with myself, because I can not get the change to take place from deep within me. I have had prayers. I have many friends, and yet it only takes one moment and my heart is again breaking. I am too much of a softie. My heart expands too big. I am not tough enough around the edges.
The only thing I can say is that today, I walked out of the facility with no tears. My heart was in my shoes, and I came home and played my Time Capsule I made last evening over and over.http://wp.me/p2g4Y2-46d
I had my water class this morning. I actually laughed and talked much more than I used to. The teacher asked me to bring in a poem that I have written. She wants to read it herself. I pondered on that, since she doesn’t really know me, but she says she wants the honor of reading an upcoming publisher’s work. I couldn’t help it. I laughed. I felt bad for laughing, but I know I will never become what she is suggesting.
I told her I was laughing because I was embarrassed by the nice complement, and thank goodness she believed me. I had a great time exercising and socializing. Next Thursday is when this poem will be read.
I showered and changed and went to see Al. I saw that he was sitting in the new dining room. He was upset. Not at me but at the changes. I think it is so difficult for Al to accept change like the rest of us. It takes him too long to digest, but some of it he did get.
The kitchen staff had scribbled out the breads on his menu and this upset him terribly. So now he had been moved to a different dining room, had his straws taken a way and no breads. That is a big amount of change at once. I convinced staff to let him have the garlic bread as that is his favorite bread, and they agreed.
Al was throwing a temper tantrum over the changes. His tremors were so bad that he knocked over his dining partner’s water-glass. He was crying hysterically, and then started to swear. I explained that if he was not willing to stop eating more than one snack at night, they were going to take something a way. He did understand this. He knew that he was eating more than he should have, but no one was stopping him either.
The nurse then came over and tried to explain about Al’s heart and his weight gain. I even piped in and told him to try to go back to when he was here at home and have just one snack again with his pop at night. The problem is, that by law, the staff can not tell him no on foods.
It is very possible that with the fit he threw he may get the breads back, I don’t know. He would not calm down and so the nurse pushed him back to his room. I stood in the shadows and let the nurse try to talk to him. She looked at me and I tried, but nothing worked. He went on and on about how every one wants him to drink water only.
They want him to starve. He asked the nurse to go a way and the only one he wanted to stay was me, but the nurse looked at me and said,” If he doesn’t settle down, we will be forced to call a Psyche Unit”.
Unfortunately Al heard every word and got even worse, saying no one liked him. Before I knew it I was telling her,” Please don’t do this. I have had Al at these places before and they refuse to treat him because they believe this is mostly due to side effects of Parkinson’s Disease“. She looked at me and said, “Oh I was just kidding”. I thought to myself,just kidding, just kidding! Do you realize that Al has heard every word you have just said! You now say you are kidding and now look at him. He will not settle down and probably will not eat.
She looked at me and said ,” He needs a time-out. I suggest you go on home”. Al and I looked at each other and I told him I would be back Friday, but maybe I will go in tomorrow. I will definitely call later today.
I have always looked at myself as the one solid thing Al can count on. I am getting a little tired of being told to go home. Maybe I can say nothing, maybe I can do nothing, but I can sit there with him, and he will know that he is not alone.
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These days are up and down like a seesaw and it seems to get lowered every time you sit on it. I’m so sorry.
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thanks Sheila, I have been finding taking a nap helps rid the pain. It makes me stay up later at night but as the hours pass so does the hurt
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((( Oh, Terry))
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you know what is awful, I am starting to get used to the valleys
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I think that is probably unavoidable but you still know and see the hills. Its when we’re in the valley and can’t see or believe there’s a way out that we’re in trouble, don’t you think? And, by the way, I’m sure that if all you can do to comfort Al is to sit by him,then that’s all anyway could/would expect.
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you are so right Lucy. I can still see and hope for the hills, so this is good. I feel like all I can do for my brother is to let him know I love him. You are such a wonderful warmhearted person
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I know that these moments are very hard for you. I am with all my heart with you. God bless you
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it is just becoming every day it seems, but I am still keeping that smile plastered on because there must be a reason for this happening
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It does not always find a reason or cause for what happens to us. We are mere mortals and can all be affected by the disease. Courage. friendly kisses
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thank you so much my friend. I feel like you really understand……
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Why can’t he eat with his mate .. in the old dinning room???? Don’t understand why they have to separate people, even if he needs his food in smaller pieces, what is the big deal, takes about 1 minute to cut the food up for him. Go back and tell them – that you want him eating with his mates. Be soft and thankful in the beginning and tell them that you really understand that they are thinking of Al’s best interest, but you would appreciate if they could let him eat where he was. Good luck.
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the dining room that he was in is for totally independent people. even when the staff recognized Al was struggling with bite sizes, they offered no help. instead they place him in the next dining room where he can get help
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Continuing ot pray for you .. things change so much from one day to the next… May the Lord grant you patience and faith as you take one day at a time and lean on His grace. Lord bless you my friend.
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you said it exactly right Rob, God and one day at a time, what other choice do I have………….
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Dearest Terry, as much as we’d like progress to be linear and to hold on to the gains we’ve made, life isn’t like that. It goes everywhich way, we forget to step forward instead of back…it’s all part of the very human experience. You’re doing great, my friend, even as it feels awful. Baby steps…xoxoM
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i have my smile plastered on my face, does this help? there has to be a reason this is all being allowed to happen. so i must keep smiling
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xo
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hugs
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Reblogged this on cftc10.
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bless your heart for this my friend
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The journey of losing someone sometimes seems so haphazard. Treasure the”up” moments even more because they are sandwiched between ” down” times. On a side note, but really important, I am So Proud of you for sticking to your exercise plan despite all your heartache! And reaching out with your writing, touching so many other people. There may be people in your exercise class who may really need to hear what you are sharing.
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I never thought of that. someone else may need to hear what I say. thanks for pointing this out to me my friend. it will make it easier next Thursday
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God bless you, Terry, as you walk even in the valleys, and keep standing by Al. You are doing so much more than I think you will ever know here. love and prayers!
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thank you my up-lifting friend……….
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sounds a bit like when you leave a child with daycare and sometimes the child gets more upset and doesn’t calm down until the parent leaves. many times once the parent leaves the child can be re-directed. i know this is so hard for you and my heart goes out to you. it does sound like things are better after the meeting and i am sure there will need to be others before all the kinks are worked out.
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I think Al is a bit like that also. AS a child better when I am not there, but sometimes it backfires and they will call saying I need to come back. It is just too many adjustments all at once. he doesn’t understand it all. I think that is why I was able to not come home and cry my eyes out. I am giving it time………..
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*hugs* I am so sorry it was a rough day. Is there anyway they can step him down off breads instead of doing the cold turkey approach? Poor al, he must feel like everyone is against him. Hopefully tomorrow will be a better day. As far as your writing.. I think your work is good enough to be published. 🙂
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you know I think they should do that too, a step-down process. who likes cold turkey??? what a nice compliment you have given me. I am in the process of someone editing my first book and have started writing my second one……….thank you so much for stopping by and chatting with me
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Al’s emotional outbursts must be exhausting for you – I don’t know what to suggest. Anthony, too, is now doing this a bit in the evenings but he doesn’t cry. If he cried too I would feel as desperate as you do sometimes. Hang in there.
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yes, the first thing Al does is start crying. he cries a lot. it tears at my heart every single time, but i still am moving forth with hope and faith of a calmer Al
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First super big hugs,Terry!! What you are dealing with right now is so much stress and anxiety!
I applaud you for doing your pool class as at least it’s a break and your doing something for you!
It’s horrible what Al is going through and as a sister it must be just dreadful. Your a strong woman and your doing a great job! Night and another hug! …….Paula xx
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thanks for wonderful words. you bring me peace and an ability to accept things for what they are. I love having you for a friend.
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And you too!! hugs Paula xx
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Peaks and valleys….I’m sure you are experiencing many of those these days. Make space for yourself and don’t get lost in all the emotions.
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I am really working hard on this, thanks for commenting my friend. i love having friends who care
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