I went and met my brother for lunch. He was agitated when I walked in. He was cursing his Parkinson’s because his legs would not move. I offered to help but he wasn’t concentrating on my voice. He was all about his pain.
The good thing was he hadn’t had any chest pains so far today. I didn’t ask but he must have had a good night also. He was tired though, but I would be too if I was constantly badgered with tremors.
We did eat together and he came back to realizing I was there and he talked about seeing the movie, The Bible on television. He loves to watch shows that he has watched before. His mind doesn’t have to work at trying to keep up with a plot. He goes on his memory and his memory is very sharp about the good word.
He went from smiles to tears and anger in less than 60 seconds. He couldn’t eat the meat that was on his plate. It was supposed to be some type of pork roast. It was the strangest piece of meat I ever saw. It was formed, well mine was. His was pureed and mine was cold and a little tough. Usually the meals aren’t bad if you can find some seasonings lying around.
For Al he tried a few bites but he kept chewing and chewing and finally spit it out. I didn’t even ask Al, I went to the kitchen door and said that he couldn’t chew it. It was too cold, too dry and I wanted him to have something safer. They made him a grilled cheese. They had also given him Brussel sprouts. I used to love these when I was a kid, but Mom over did it and I learned to hate them.
For Al he couldn’t chew them up. They were too hard so I had those pureed for him. It must have been a bad day in the kitchen today. Usually all goes smooth. By then he was upset about his meal so the increase of the tremors sped up. Staff kept looking in our direction as they heard the constant clatter of Al’s silver ware clacking on the plate. By the time he got to his ice-cream he was a total mess. Clacking and slopping and big tremors. He was embarrassed and he cried.
I tried to help but I didn’t do a lot of good. I wanted to say something to the constant stares but I didn’t. Maybe they never saw someone with speedy tremors. LOL. I hope I am seriously joking here. Other wise I am going to go in and swipe him out quicker than you can wink.
Cheryl the lady who takes him on outings came. It was his day to go to Day program. She was also going to take him to an antique store. This should have stopped the tears and brought a smile but it didn’t. He was already getting used to the routine of going to Day Program so why in the world was she adding another place? This was his problem, he just didn’t understand they could do other things too.
When you mess Al’s routine up you get problems until his brain can catch up with the change. She and I cleaned him up and took him down to his room so he could go tinkle before they left. I got his jacket out and he asked for his wallet.
Al said there was a five dollar bill in it but guess what, there wasn’t anything. Oh wow, this upset him and me and Cheryl. Chery and I both knew that there had been. It was there when I took him to the ER. Although Al has been talked to many times about having money in his room he refuses to have an empty wallet.
Because I was with him the last time he should have gone on an outing he really did have five dollars left over. He was at the ER so he had missed his outing. We knew that some strange fingers had helped themselves to his money. He cried and cried. He just couldn’t figure out why someone would hate him so bad to take his money.
We went down to the little bank where I keep his money and I pulled five more out for him. I reminded him that if he had any left over from his outing he may want to put it back in the bank. I know he won’t do it. A man likes to have some green inside their wallets. I get angry that others take advantage of someone like him. It isn’t just him it is many residents that get ripped off. From money to jewelry, it happens way too often.
I walked outside with them and waited for him to be lifted up into the van. Tears were rolling down his face as I told him I loved him and to have a good time. I waved and he cried. He left and I came home.
Related articles
- Testimonial: “My Tremors Have Decreased” (fuelforthoughtblog.com)
- Thoughts (pbriselli.wordpress.com)
- Linkage Connecting Parkinson’s and Visual Problems (dranilj1.wordpress.com)
- Alaskans getting easy treatment of Parkinson from Alaska Neurology centre (sleepdisorderanchorage.wordpress.com)
- And the greatest of these is love (pbriselli.wordpress.com)
- “Why should we read the Bible / study the Bible?” (altruistico.wordpress.com)
- The Chest Pain Dance: Our Latest ER Craze (patersoner.wordpress.com)
- See doctor after ER visit for chest pain: Canadian study (globalnews.ca)
Thoughts…. keep your chin up….
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thanks gray!!
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Terrible … you should look into that .. because if it happens to Al, it happens to more of the patients. Also he should keep his wallet … on the place where they don’t expect to have it.
He have been able to hide the money … you know how it was with the cookies, so be careful …
I hope there is an explanation to the whole thing. Glad that you got some more time together.
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I just got off the phone where I reported it and they said they would write it up but they won’t replace it
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Oh this hit home for me. Big hugs my friend.
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it is terrible that people still from the helpless. If this happened to you also, I am so sorry
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It is really sad. It’s happened to my family members. You’re right, you feel so helpless. It breaks my heart.
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it happens so often it is pathetic
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God bless him…and you.
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thank you my friend. nice to see you!
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THIS makes me so angry grrrrrrrr!! How can any one steal it just baffles my mind, I can’t stand a liar, thief or incompetency. Well a few other things too but this just really infuriates me. I know that nothing can be done but maybe he could hide his wallet in a shoe or in one of his cars or something, He looks good though I enjoyed the photo. Love and prayers for you both.
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My thoughts exactly 😦
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It takes a lot of nerve to take from anyone let alone someone so sick. I had his wallet buried in his clothes but I guess it should have been hanging from the ceiling
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It must have been heart breaking for you to leave him in such a way but I am sure he had good staff members taking care of him. And you’re right if people in a place like that haven’t seen someone experiencing tremors like that then they definitely need to learn a lesson or two.
Thoughts with you both x
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Yes I am sure he was in good hands but it was hard to leave those tears……………I know not enough people know anything or very little about Parkinsons
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Terry, I have been away for a while. I assume your brother is no longer staying with you. I hope that things have been working out better for both of you. Look forward to “visiting” you more.
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He has been in a nursing home since November but now we are in the progress of bringing him home. His Parkinson’s has entered his heart and chest cavity so I want him home. I will have help though through a waiver. He will go to an Adult Day program and will have help here at home
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It’s wonderful that you can be near him each day and with help. These will be priceless memories one day. I wish you the best.
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I try to stuff everything about him in my memory box……………so glad to see you again
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Hugs, Terry! Despite the tough day I am glad you got to spend time with Al. Glad he still remembers the Word, too! That is a very good thing.
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I would be so shocked if he ever forgot the word. He reads the Bible so much. It is always good to see him, I just wish he felt better
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Terrible.
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it’s a darn shame. they work and he doesn’t. use their own freaking money
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Terry,
I’m glad you reported it. Always report it, because when this happens, there should be a police investigation. I’m sorry it was such a difficult day for you and Al today. I pray the Lord blessed the rest of his day, and that He comforts you as well.
Love,
Cheryl
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the social service lady from the facility called me this evening saying she has upset my brother by letting him know she doesn’t like him having all of that Easter candy on the floor next to his recliner. I don’t know anymore. So he was upset today and now upset tonight. I just get tired of it all I guess. I just wish they would leave him alone
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You have the right to tell her that he is an adult, and if it brings him pleasure to enjoy candy, then she needs to respect his wishes. Remind her that as long as he lives in the facility, his room is his home, and no one has the right to enter someone else’s home and rebuke them for having candy there.
Also, remind her that you want Al’s last days to be as peaceful and enjoyable for him as possible. Therefore, she and the staff are required by law to treat him with dignity and respect. That means that staff should not be staring at him while he is trying to eat. Staff should not be stealing from him. Staff should not be entering his home and fussing at him for having candy.
Also, if you don’t have a copy, tell her that you would like a copy of the state’s patient/resident rights. Then, go through that list, and highlight the rights that they have violated, and send them and the state a letter containing dates and how those rights were violated. If you can’t remember dates, begin documenting instances when they have violated his rights, so that you can report them, not only for Al, but for all of the other residents who have no advocate.
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alright I will. thank you for the helpful advice my friend. I feel like you are my angel watching over us. bless you
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Leaving Al in tears has to tear you up inside, but hopefully his day trip went well and he was able to calm down and enjoy it at least a little. Thieves are the worst, and I can kind of sympathize with Al for feeling helpless — when people steal stuff it robs a person of so much more than their money. Prayers that God’s comforting hands give Al some peace and rest.
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it got worse. last night I received a phone call from the facility letting me know they searched his room and found some items they want sent home. they didn’t like it because he is keeping his basket of easter candy on the floor next to his recliner for easy reach. I didn’t go out but I knew between the loss of his money and the talk they had with him last night his evening was messed up for him
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They SEARCHED his room?!! All this time I thought the place Al was in was a nursing home — I had no idea Al was an inmate. My bad. Of course, I’m being sarcastic. No wonder Al is feeling so helpless — they are treating him with all the dignity and human rights of an animal. Life is too short, especially Al’s, and their treatment of him (and you) is inexcusable. It is not unGodly to put your foot down with people when the situation demands it.
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that is the way I felt. if they won’t replace lost or stolen items then why in the world were they searching his room. Maybe he is a spy and I don’t know it. I battled it out on the phone with them today and I am going in tomorrow. Should I wear my ten gallon hat and spiked boots?????? lol
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LOL!! Yes.
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lol
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awwww….so sorry, Terry! This has got to be the hardest part when you’re struggling for real connection and he’s fragmented. <>
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It is Amy. You seem to understand so well how it ripped at my heart leaving him when he looked like he was clinging to me to help him
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I’m not even his sister and sometimes when I read about him…I want to cry too! 🙂 hugs Paula xxxx
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it doesn’t take much to make me cry when I think about him. I am too much of a softie i think
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Me too! x
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*hugs* sorry al had such a bad time with tremors. Is there nothing that can be done to help him chew? I can imagine getting your food pureed is embarrassing…but would it help?
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he used to hate seeing his food look different but I think he is now used to it. but yesterday dried, cold and pureed was just too much. I mean it was cold too because my whole meal was cold
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Hey Terry, it’s Pete. I wish I could do more than you! I can see what you’re going through from your brother’s eyes to some degree and it breaks my heart to see what’s happening!!! I’m lucky in that I’m still in the very early stages of Parkinson’s. Keep your chin up and keep fighting for yourself and your brother! God loves you both. Just keep the Golden Rule in mind. We’re all given what we deserve and YOU are building up some massive GOOD karma!!!
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Hi Pete. I hope that with you being in the early stages, maybe a medication can slow it down for you or maybe a surgery. Al could not tolerate the PD medications. They made his symptoms so much worse. Please stay in touch. Maybe I can be a comfort to you in some small way if you ever have a rough day. The Golden Rule still works today just as well as it did years ago. Thanks for the heart felt comment my friend
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When I worked in a nursing home in Warsaw, residents had problems with money and snacks being taken. I always dreaded the holidays that involved candy, cookies, etc cause they always disappeared and night shift always got the blame. I was the night shift supervisor at the time.
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I hate to say it but it still happens Vickie. so sad too
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