On and On and On


English: Modern wheelchair

English: Modern wheelchair (Photo credit: Wikipedia)

Another story I am going to write about. I hope you are not getting tired of hearing about my brother.

I received a call today from an office lady. We have been having issues with Al understanding that he can’t take much money when he goes to outings. This is another similar situation. He was going out and wanted to place a car on lay-a-way at Wal-Mart. He needed more money than what I allow him.

She called to  see if I would approve it and I said no. Now don’t think I am being mean and rude. I just put up two long shelves in his bedroom. I filled them with his cars. I have filled every table and dresser I can and two bookshelves with his things. I can not afford any longer to place cars, coca-cola and other odds and ends on his floor because of his instability.

The rest that I had no safe place to put I bagged and placed in his closet. The facility also does not like him having these cars in his room because of theft. So I said no. I was planning on going to see him so went a few minutes early to talk to him.

I explained why he can’t have the car and he went into his adult temper tantrum. He accused me of not caring about him. He even went so far as to say that I thought he was a retard. Wow, that one threw me for a loop.

I won and he was upset. I dissected his issues and think that  part of him was wanting to throw his fit because he wasn’t getting his way. Another part of him really didn’t comprehend why he couldn’t have more cars. Lastly he doesn’t understand why he doesn’t have his money now. He thinks the facility stole it from him.

I have to admit I think they charge huge amounts of dollars but beside the point I guess. I told Al that he and I have to pay for him to be there. We would save the bigger cars for Birthdays and Christmas.

Finally he settled enough to eat and then his ride appeared to take him. I took her aside and asked her to please quit taking him to Wal-Mart so often. It stirs things up inside his head. That I would prefer if he went to the day program more often than not. I added that stopping to get a diet coke was not a bad idea either. Just keep him out of toy sections and antique stores. He doesn’t need to visit them every single week. She said alright.

I was getting ready to leave and I saw one of the therapist on my way out. She used to come to the house to do Al’s therapy. I stopped and chatted for a few. I asked her how Al was doing in his wheel chair therapy. She said, “We are almost done. He is refusing to do anymore work on it. I am not wasting my time on someone who refuses to do the work.  He claims it hurts to bad. As far as the transfer from chair to wheelchair, this isn’t going bad at all.”

I said,”What else are you trying to get him to do?”

She came back with “We are trying to keep him walking”.

I explained,”I have been over this many times with you and have had a recent meeting about not trying to fix the broken parts. I don’t want you to work on the walking. Not that I don’t want him to try but it is getting very difficult for him. I would much rather have you work on the wheelchair training. This is what he is going to need worse as you have stated he can barely walk anymore”.

She looked at me and said, “Oh I would think you would want him to keep walking.”

“I sure would like that a lot, if he could. He still walks but just tiny distances. It seems to me the wheelchair is going to play a large part in his life from now on”.

She turned away and went back to what she was doing and I turned and left the front doors. I was thinking,here we go again. Another day of I can’t get my point across. Another day of others thinking they can fix the broken pieces.

Can’t anyone hear me? I would give Al my legs if he would walk again. But the Parkinson’s Disease is bigger than Al and me put together. I have to accept that he is walking less and less and depending on the wheelchair. So let’s just work on that and leave it at that, please????

32 thoughts on “On and On and On

  1. First, about the cars… ls it possible to tell him that in order to get a new car he has to give away some of his old ones? Just a thought. and as for the wheelchair training – gee it may be easier for her to get him to walk but long term, how can it make any sense? I am able to pull back a bit and would want to know why. (does she have a supervisor?) Oh, I just know how frustrating all this is for you. Continue to do your best. xx

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    • The car situation,,,,,,,I have mentioned this so many times, to sell or trade or something to make more room but he won’t budge. He has had five months of therapy trying to keep him walking. I don’t know how to explain it well enough but with the constant work-out on his muscles for so long, he actually hurts more now than ever. a little work with walking, great, pushing to the max, not so good. he needs to be able to transfer himself to the wheel chair. I can not pick him up easily plus continue to walk on his good days. what do you think of this idea?

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      • The transfer is the most important part. I know that is the first thing that anyone asks when considering a facility so getting his doctor involved may be the right measure.
        Like a child, he will continue to have meltdowns about the cars and I do understand that as his enjoyments are limited so I guess best-case scenario is to keep solid on your stance with the exception of occasions. I am an awful softy so disregard if needed xx

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      • I am a big softie also. This is why he has a room full of clutter. lol, but somehow I have to let him know that he can’t have one every time he goes to a store, and this is where he is at right now. it is because when he lived with me we went so many times just for him to get a new car.

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  2. Regarding the therapist’s comments: I am astounded at her attitude, as were you. What a judgmental thing for her to say “Oh, I would think you would want him to keep walking.” I’m sorry that you had to be subjected to her condescending statement. (As if you wanted your brother to be increasingly dependent on others and relished the thought of him losing more and more of his abilities.) You have a healthy attitude deciding not to fix things that are permanently broken. You are thinking realistically, and you’re choosing what you feel is in the best interests of Al. I know you’re frustrated not being able to get your point across Terry. If they aren’t listening to you – find someone who will. Bless you greatly and may this week improve for you and Al.

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    • I don’t know if there is a book with many chapters of standard forms these nursing homes follow or what, but Al is not the standard patient. he has many medical issues and they just can’t seem to conform him to their ideals….it is frustrating to keep explaining on and on and on

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  3. Obviously the therapist has no training in working with people with PD. The sooner he accepts the wheel chair the safer he will be. HE WILL FALL. There is no ifs , ands , or buts about it. That leads to broken bones on his part and a lot of strain on you picking him up. Stand your ground.

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    • the biggest reason he was placed was because the last week he was here at home he fell three times. At that time we did not have a wheel chair and I honestly didn’t know what else to do to keep him safe. Now I am learning new things and ways to keep him home. Examples changing bedrooms, wheelchairs, etc I am not going to give in unless I can see that Al is able to perform to some extent what they are doing. He had therapy for walking for now five months. after so much strenuous work on those poor leg muscles he is actually weaker and in more pain today than ever

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  4. I think walking for walking sake if he can’t walk steady is not necessarily the best way to go. Having him learn to adapt to getting from bed and chairs etc to wheelchair I can see at this point. So don’t feel bad trying to get this across…Diane

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    • I think this is very important also. It is what is happening. Things will get so much worse that transfers are now a top priority so I say save the energy for transfers instead of proving you can walk. thanks Diane. You do understand

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  5. Absolutely go to this womans supervisor, get his dr involved!! as for a standard form or procedure used by facilities there is only ONE! to do whaty is in the best interest of each and every INDVIDUAL, NOT what is convienent for them. You have the patience of Job Terry I would have already had police called for my making a disturbance. I just cannot understand the disrespect and total lack of compassion displayed by this whole facility. If they have a web site you should go there and list al the problems so others wont be duped into placing family members there. God bless and prayers for both of you.

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  6. Terry,

    When I worked at the LTC (Long Term Care) facility, there were a lot of residents, including my mother, who were just like Al. They wanted to hold on to so many things, they became pack rats. In fact, my mother, who was always a neat freak, refused to allow my sister to remove two Christmas trees from her room, because they were hers and she liked them. This was long after Christmas had passed.

    Here’s the thing though… If we put ourselves in their shoes, it’s much easier to understand. You see, as the disease and the dementia continue to ravage their bodies, people lose more and more of their independence, which seems (and is) so unfair to them. In their minds, they know what it is that they want to do, but their bodies will not cooperate, and this causes great frustration and anger for them.

    Therefore, they begin to hold tightly to those things that they are still able to control. For Al, he may hold tightly to his car hobby, continuously adding to his enormous assortment of cars, because he CAN. You see, there are so many things that Al is no longer able to do, but he CAN still buy cars and coke products, and they are HIS. This is something that he feels he has control over.

    Now, you still have your complete mind and health, and you see all of these cars, which take up way too much space, and you logically think, “We need to call a halt to this, because it has gotten out of hand.” Therefore, you go and talk to Al about it, and as you talk about no more cars, he stops seeing you as his beloved Terry, even though you may be right, and you have his best interest at heart.

    Instead, in this instant, he sees you as someone who wants to take away his freedom. Even though this was never your intention, he sees you as someone who is cruelly depriving him of the only things that he still has control over.

    I read your posts, and I know how much you love Al, and I can only imagine how hard this is for both of you. You see, Al no longer feels useful. He no longer feels like a man, which is why he’s acting like a spoiled little boy.

    What if you approached it differently, and start sharing with Al about some poor little boys from a local neighborhood or shelter, who have no cars? What if you ask him if he would be willing to start giving some cars to those little boys, which will make room for him to have new cars? Perhaps if you explain this your church, they would know of some little boys who would benefit from the cars, and would maybe even send Al a thank you letter or visit him? This would make Al feel useful and important. It might restore some of his lost manhood.

    You know Al better than I do, and you know what would work best with him, but the Lord has given me understanding about how the elderly feel. I hope this is helpful for you and Al, and Terry, please know that even though he acts out against you, it is only because he feels so hopeless and scared. He loves you, and you are all he has, and he is so scared of losing you, his cars and everything else. I praise God for your faithfulness to your brother.

    Much love to you,
    Cheryl

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  7. I think sometimes health care workers have tunnel vision and cannot see past what is right in front of their noses – mostly the stuff on paper. I don’t know if I ever told you this story, but I had a friend (who died several years ago at age 70-something) who was born with a condition called arthrogryposis. It means his joints were fused so he never walked. He got sick a few days before he died and the nurse came over from the hospital across from where he lived. The family actually had a copy of the report the nurse made out. One question on the report was “What do you hope to achieve with treatment?” Her answer? “Get him walking again.” ??? I wonder just how she expected to accomplish that. The man had never walked in his life. And he was well-known in his community and around the world, so she should have known this. I think this is the kind of thing you are dealing with and I’m not sure there is any way to change this kind of attitude. It’s a little like telemarketers. If you ask them a question or make a comment that does not fit in with their script, they are confused and have no idea what to do or say next. Just keep leaving Al in the Lord’s hands where he will be safe.

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  8. A struggle for sure, my friend…but stay strong and stay positive. God won’t fail you or Al! He works for the good of those who love Him and I know you do. Just sending a 🙂 today to make sure you remember to smile today. You’re doing a great job with Al. God bless you!

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  9. They really have some attitude at that place … terrible – I think you should talk to an ombudsman about this – it really stinks. He needs to some exercise even if he doesn’t manage very well .. Terrible and so upsetting … they need to sort out the attitude of their staff. You just tell them.

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