Trip Gone Bad


think

I try to be nice and thoughtful in general, so I decided to take Al out to supper to the DQ. They have the Pumpkin Blizzards now, and I had a coupon plus they had a special going on for 2 double cheeseburgers for $4.00. I knew that he had not been out of the house for the weekend, plus he is still upset for the fact that as he says, he is not healed yet, so why is the shower girl and therapy people not wanting to keep coming here.

The office people from the Home Health Care told me this morning, that they were going to see what was going on, which to me, did not make me feel real secure, because if the office doesn’t know, then who does? All day the phone never rang, so I don’t know if anyone is coming back this week or not. I gave Al his shower this morning, but I should not have to do that part of his personal care, and I still don’t appreciate it hours later, that no one called me prior, and I just received a text message at 9am, saying the shower girl would not be back, and his shower was scheduled for 10:30. Great big notice you gave me, thank you very much!

So we went into the DQ, and he seemed happy about getting his blizzard and his food. The girl brought the food over to our table and we started to eat, and then he asks me if we can go to Wal-Mart to get him some slipper socks. I just had mentioned that this morning as I was putting clean clothes into his dresser drawers, that we should get some more now that the weather was turning colder. I told him that we could not go to Wal-Mart, as it was going to be dark in about forty-five minutes, and the deer are out now in early evening. I do not like to drive after dark, because I guess old age tends to make the eyesight worse, and I also did not want to get slammed by a deer.

He started to cry and when he gets upset his tremors pick up more speed, so I said how about we stop at the Dollar General store on the way home. I can run in and get them much faster than going to the big store. His reply was no. I said that I thought he wanted to get slipper socks and he stated yes he did, but he only wanted to get them from Wal-Mart.

Knowing him as well as I do, I knew he had a side purpose for wanting to go. He wanted to look at the toy section for more big cars. Now these cars are cool, I admit, but they also run from $15.00-$24.00. I have been working with him on a goal that he can only have these expensive cars once a month. When he didn’t want me to stop at the smaller store, I knew right a way it was the car section that was making him want to go to the larger store.

For the second time I explained quietly and nicely, that the answer was no. He began to raise his voice and cry harder, and the tremors were full force by now. I hate to say it folks, but I was beginning to get mad, not upset, mad.

If it is your young child throwing a fit, you can pick him up and remove him from the scene, but a big man, I can not do this. I told him to hush, to knock off the tears, that his game of throwing a fit was not going to work. I reminded him of where we were, and that people were staring at him, and reminded him that he didn’t like people to see his tremors so I was sure they did not want to hear him or see his tears.

He continued this bad behavior all through our meal. I snapped at him and told him that I was done being nice, that I was thinking of him when we decided to go out to eat, and I did not appreciate this bad treatment. So he stared at me with every bite he took. I was so angry at his fit, that I wanted to grab my supper and head for the safety of my car, but instead I snapped once more, and I picked up my ice water and told him if he did not cut the tears and zip his lips, I was going to have to splash him with my ice water, and then he says too loudly, that is abuse!

I got up and left my supper sit, and went to the car. I could see him from the front door as he sat there and ate, and he kept shaking his head back and forth, at the bad treatment he thought I was giving him. He is lucky, because what I wanted to do was pick him up and give him a spanking. Yep, I sure thought that. I don’t care how old he is, you don’t throw temper tantrums in public, when I am with you.

As I was sitting in the car watching him and waiting for him to finish, I looked up at the ceiling of my car and silently cried out, please someone help stop what is happening. I am tired, someone help me. If anyone listened nothing happened. He finished eating and put his jacket on, and came to the car and we came home. He is in his room sulking and crying and I am healing myself through blogging.

48 thoughts on “Trip Gone Bad

  1. Not a good day Terry…Hope tomorrow is a more relaxing one for you. It has to be hard disciplining your ‘grown’ brother when as you say even though it is child like behavior you can’t treat him as you would a child with a temper tantrum…Diane

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    • he was throwing a fit Julie, just like a child!!! he is lucky I didn’t toss that cold water in his face! I have never hit him or touched nor will i ever, but a cold water in the face may have hushed his mouth!!! LOL

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  2. It is not funny when this happens, that’s for sure, Terry and it puts you in such a bad place. gggrrr. God bless you and send you help and give you the strength and grace for each day ahead.

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    • yes, i hate admitting that i need help, but i do. now i just got a call from the nurse stating they are taking Al’s showers down to two days, so i have to find someone who can shower him one extra day.

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  3. Terry, you are fighting the next step for Al so hard. You really, really need to place him somewhere with the professionals soon.. even just for the weekdays. You need more than in- home help. I am not even sure how to say this – but Al should not determine Who You are. You are so close you two. Be careful. Please be careful. c

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    • i just heard from the nurse, that they are dropping the shower girl down to two days a week. this upsets me since he is incontinent. how would they like to only take two showers a week? now i have to find someone who can do a third shower. also the nurse said that november 12th, is the last day for the therapists, and then it will just be him and me again. i don’t think i can go backwards now. something must be done.

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  4. Terry,
    I am so sorry to hear about your difficult day. I have been dreading the day when you would tell us that home care services would be stopping as I know the support, particularly with bathing, has been helpful. It is unfortunate that Medicare does not cover these services long-term- as soon as someone has reached ‘maximal’ potential with rehab or are no longer homebound the services are no longer covered. One option to explore as a follow up to home care services is local area on aging services. These services are different in every area so I don’t know what is available in yours. Sometimes there is a waiting list for services but it is worth getting on the list if Al qualifies for their help. Another option to consider in the future is hospice care. One of the benefits of hospice care, if Al is eligible, is that he does not need to be homebound and you may be able to get more assistance from hospice aides and volunteers. I will keep you and Al in my thoughts and prayers.
    Terre

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    • i have called the local area on aging services, and they turned us down flat, because Al is not old enough in their eyes. I have also called Hospice, and they tell me that PD is not a disease that has an end, so at this time they refuse to help. they said to call when Al has six months to live. I am praying hard, because you and I both know nothing is going to get easier, only more difficult. I don’t know what PD keeps Al from getting help. If it was cancer they would all be here knocking on our door. Thanks for the prayers, we need them badly.

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      • Terry,
        Those with advanced Parkinson’s Disease are eligible to receive hospice care according to Medicare Hospice guidelines. The hospice is correct in that his life expectancy must be limited- the guidelines do say “less than six months if the illness runs its normal course” but, of course, we do not have a crystal ball. I suggest that you inquire with Al’s physician if he thinks hospice care is appropriate at this time. You may want to call a different hospice program that has a better understanding of the progressive nature of Parkinson’s Disease and how hospice can help.
        Terre

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      • ok thanks, I thought they were all the same, so i will call tomorrow, you are helping me Terre, and I wish I could somehow thank you. even if this doesn’t help out, at least i have a new lead to try

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  5. i am going to sound hard hearted but i assure you that i am anything but. in my opinion the bad news is his charge of abuse could have caused some problems if someone had called the police. the good news is you got mad at being held hostage and being emotionally blackmailed by someone who is not a bad person however, he is behaving badly. if the police had come he may have been temporarilly placed and that would have let him know that there are repercussions to making those kinds of outbursts. he needs to understand that there are consequences to his outbursts.

    you deserve to be treated with respect. don’t forget that.

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    • you are right, he could have been arrested, and i hate to think of it as the inmates would have a good time with someone like him. i am thankful that nothing was done, but going home it continued until early this morning, then i got some sleep, but when he got up he has still been continuing the saga. right now i don’t feel well. i am tired and can’t seem to concentrate.

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  6. Oh, do I know what it’s like when the child comes out of the adult body…and I hate that you gave up your supper…but, sometimes it’s the only way to make a point …and I would remind him … if you go out again…that next time maybe he could sit in the car while you finished your flurry in the restaurant…or as my Daddy would tell us, “When I forget this time…we might go again!”…and sometimes it was quite awhile…ha, ha!…

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    • the head therapist came around noon and Al continued his saga and told her he wanted to go to a nursing home and that he wanted to die. he continued after she was gone, and now he has opened a can of worms, because the therapist is going to be discussing today’s words with the head nurse. i am tired, because he kept me up until almost five this morning. i now feel sick and defeated

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      • Regroup first thing…and do only what YOU think is best…My sister who has a terminally ill husband was considering advice of getting Hosparus…and said NO…and that has been 6 months ago…and now he is getting out some…and she still has him with her a little while longer…YES!…she is worn out…but, as said…regroups and glad she does…Love to you…mkg

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  7. I feel your frustration. There’s really no way to make it better while it’s going on. I took my sister-in-law, who had Alzheimer’s & dementia with lewy bodies, to a symphony concert because she loved classical music and my brother needed a break. At intermission “everyone” was drinking champagne and we weren’t…I didn’t think champagne was a good option for my sister-in-law because she would have tossed it down like a shot of whiskey and asked for more. So I politely said that I didn’t bring enough money for champagne; that I used my money for parking. Reasoning didn’t work as she started to scream that she wanted champagne and that if I didn’t buy some for her she was walking home (30 miles.) Now visualize a magnificent concert hall lobby and the crowd is politely, yet quickly, getting as far away from the scene as possible.

    To make a long story short – no champagne was purchased, I endured a horrible second half of the concert as I awaited the next outburst, and then the car drive back to my brother’s house. By the time I got home I needed to line up a few shots of tequila, but I didn’t.

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    • that is exactly what i go through here at home, and i hate to admit it, but it is really starting to drain the life out of me. thank u so much for understanding, and although the behavior was bad, i totally get how you felt

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      • My sister-in-law died on July 4, 2012 at the age of 69. Throughout her disease I had to keep reminding myself that it’s the disease that is causing the behavior, not the person. But it’s difficult, isn’t it, when the disease looks like your loved one. I hope and wish the best for you.

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      • thank you so much Boomer for your compassion for the situation and for understanding. I feel in my heart that this is going to explode soon as Al is not afraid of showing his bad behaviors to nursing staff. PD is not the only thing we battle here as I believe his baggage he carries from his dad is almost as strong. I don’t know what is going to happen but something does need to be stopped from progressing

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  8. I’m so sorry you’ve had such a terrible day (and more).

    I’m not sure, but I wondered if it were such a bad thing that the head therapist saw a glimmer of what you are putting up with. Over here there are some charities that will offer a little free respite care. Would you have to pay?

    Would it be possible to make an agreement with Al (like a good behaviour agreement with children) in advance, that you can go out for a meal but he must treat you with respect, Else the agreement is broken and he doesn’t get to go next time. Sadly this limits your excursions too, but it might make him understand better? I’m sorry I don’t have the magic answer, just wild guesses like everyone else. You must be so tired, I’m thinking of you.

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    • no free anything. if i get respite i will have to pay for it. i did tell Al today, that it would be a while before he could get another car, from his bad behavior, and that he would probably get one once i forgot what he did, he just looked at me

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  9. I am thankful you have your blogging friends to come to. When I read your stories like this one my first thought is to go over and just hug you. So it is not the same but like the others I sent here is an cyber hug for you {{{{{{{{{HUGS}}}}}}}}. God bless you….Patty

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    • i always accept hugs Patty. although they are cyber hugs, I feel them in my heart just the same and maybe more………….I know God is listening and watching, and he has to have a plan as these actions progress and the illness does also. thank you for being so kind to me

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  10. I really need to get better at reading your blogs as you post them, but I am sometimes so exhausted when I come home from work that I just sit and veg. I am so sorry about the day you had. Remember that you are loved and have a lot of prayers ascending for you both. Hugs.

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  11. Terry, it is like raising a child, but harder because you can’t just pick them up, carry them to the car and go home. I really feel for you and the struggle you have to endure. Remember this…”Greater love hath no man than this…that he lay down his life for his friend.” You are laying down your life daily for Al and that is the greatest act of love in God’s eyes. As he was willing to do for us…you are doing for Al and God knows that. Your reward is in Heaven, and one day you will stand before the Lord and he will say to you…”Well done, thou good and faithful servant!” On that day, even Al will know this is true.

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