I Wished


Book of Answers

Book of Answers (Photo credit: Caro’s Lines)

My spirit is restless this morning. I was awakened by the phone ringing. It was a company I have been working with in regards to  getting Al  out of the nursing home. Al is restless and unhappy. I don’t remember him being like this when he was here with me.

Not that our home is close to heaven; but I believe Al’s attitude has changed towards life itself. I had called to see why he did not go to a certain program last Thursday on his outing.

No one that I questioned at the facility knew the answers. I should not say this but I am thinking it, so why not go for it? How can a facility work together day after day and yet when a question is surfaced not one person in any of the departments knows the answers.

It just floors me or maybe I am too impatient. I ask and I do not receive. I am so bad at handling the unknown. I move throughout the hours and days like a mechanical doll. In the head sizzling, is the question that you try so hard to patiently wait to get the answers.

I may have Al placed and I have more quiet time here at home, but sometimes I wonder if expecting Al to receive better care because there is more staff than just me at home was such a good idea.

Now I am faced with the challenges of going through the linked chain to get help.  It seems that the priorities that need to be worked with for Al can not be done. The state will not allow the staff to become too closely involved. They can admit him, take all of his money, give him medications, make sure he is encouraged to eat three meals a day etc. But, they can not stop the weight gain, the lack of socializing Al needs and wearing the same clothes day after day. They can’t work on issues Al has unless it is through a physical therapy department.

I am just a rambling on mess. I am to the place that I don’t know how to fix things any longer. Should I toss this whole process as if I am putting a dirty dish cloth in the washer? How far do I go before I have dug up the foundation of this staff?

I finally got my answer this morning through the phone call. Al did not want to go to the day program. He was upset. He always knew that when I said the word outing, it meant fun and hopefully buying a coca cola item. He got angry that he could only take a few dollars with him because he wanted to take out all of his money in case he found a coca cola deal. Well maybe I should add another weight to my shoulders and blame myself for trying to make Al smile. I did take him a lot of places. So now I pronounce my own self guilty.

I get it to a point. We all want to get what we want in life. It is our human nature. The difference is when Al was here I could reason with him. No one seems to be able to reason with Al at the facility. I can’t sit here and blame his new home. Maybe it is the confusion of his Parkinson’s Dementia. Or maybe Al is simply throwing a tantrum.

But I do know that he was looking forward to going to the program because as he said, he was going to get to see all of his old friends. Now through babbling on like a blooming idiot, I have finally keyed in on the point.

Al isn’t recognizing the effects of his behaviors. He was asking me why he didn’t get to go to the activity when he is the one who told staff in anger and hurt that he didn’t want to do anything if he couldn’t have some of his money.

Now I see a child throwing a fit. Should I pounce on Al and let him know this is all  his fault? Let him see that his anger and hurt by not getting what he wanted ruined his own trip? Does he get it, or is it too complex for his thought process?

This is where my mind swirls and before I even had my coffee cooking a way, my mind was already a jumbled hurting confused mess.

You see one of the things I love about myself is I can move forward if I choose to. Now I am in constant state of being on hold. When the professionals don’t have the answers, who does? When they don’t have the answers, who does?

I can’t make any hasty decisions because I am dealing with a delicate unbalanced mind. I don’t want to upset the so-called apple cart. I sat on the bed and thought about it for a while. I then decided to go in and talk to my brother today; but I wanted back-up.

Not for the reason of my safety, but for the professional words to help guide me through the explaining process of what I wanted to say to Al. I called the facility and was told the lady I needed to talk to just stepped into a meeting that would last for 15 minutes.

She was going to give her the message to call me as soon as she stepped out the door. It has now been one hour and ten minutes and still no phone call. Instead of tossing this over my shoulder, flipping on my radio to turn my brain on auto, I will sit here and stress because I can not get the answers. Sounds impatient doesn’t it? I may have to admit that I am a little  this morning. But when you had a tiny puddle of mud in the beginning and after months of digging in it, you now are standing in a pool, I tend to lose that good patience quality.

Some things were just so much easier when he lived here at home. It was his and my decisions. It didn’t include 25 departments and hearing too many I don’t knows. Life was simple, when I look back. All I dealt with then was his sadness and depression. Now it is constantly looked at as how to fix it. This includes many meetings with hope built-in to them and walking out still unsettled. The alternative is to keep giving him more and more medications until he is a zombie in a restless mind and body.

I just wish now at one of my weak moments that Parkinson’s would fall off the face of the earth. I wish that I was asking Al what he wanted to do today. I wish that I had not placed him where money became the object. I just wish. Wow, I am tired all ready and it isn’t even noon yet.

40 thoughts on “I Wished

  1. There is nothing worse than the helpless feelings we have when we want someone to return to the person we remember when times were good. There were times I wished for the wealth to just take time off and care for all the needs of my parents when they were failing in heath, but I couldn’t. To see someone dealing with a disease we wish were nonexistent is terrible, but it is what we seem to live with today. Just know your words were felt and I feel your anguish.

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  2. You’re remembering Al being at home ‘easier’ but it only was in certain respects Terry. Re-read some of the blogs where you were so exasperated and weary and feeling unable to handle it.

    The reality is that your stresses now come because of a different reason…There will always be issues for Al because of the PD and his lacking the ability to reason ….While it must be so draining on you …you can only deal with each issue at a time…one day at a time…And I think you should help Al to understand that things cannot always be as he wants…because other people are involved. ..’I do disagree with the fact that the home cannot ensure that he has clean clothes each day …that’s a given to me…just some thoughts…Diane

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    • I have tried so many times to explain to Al that he no longer has the money he used to and his purpose is to get a way from the nursing home more than purchasing things, so either he is refusing to accept or he doesn’t really get it. I can’t figure it out because PD has a way of taking more from him each week. thanks Diane for commenting and you are right, i am only looking at the good past

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  3. Any words will sound comforting, I just want to send you all my love and a big hug. You know, when our wishes are real, they become true. Maybe not the way we expected but on another level. I hope you rest well!

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  4. Your brother cannot truly be held responsible for his actions or words. His brain is systematically being destroyed by the Parkinsons and maybe even some dementia. He is the patient and should be treated with love and RESPECT. Al is the reason why the staff are employed. He is not an INTERRUPTION of their duties – he is their duties…The staff should manage the same clothes issue – it is a KNOWN symptom that they should know how to deal with. Al being there should provide you with peace of mind not more stress and anxiety. Hugs

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    • this is very true and you have made excellent points. the thing that lets Al slip through the cracks, example clothing attire, is because Al’s brain doesn’t function and so therefore he doesn’t speak up. He just lets them pick out his clothes because he knows one thing for that minute, he needs to get dressed. This in turn helps the staff to take advantage of Al and it royally pisses me off

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    • thank you Julie, Today I feel weak and even though it is not such a good thing, I want to just go back to bed. That darn lady still has not called and now it has been over two hours!!! Screw it all I say, give me a darn drink!!!

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  5. My heart goes out to you, Terry. I have no wonderful insights or answers but just wanted you to know I’m sending lots of good thoughts and energy your way. I hope you’re out to work out something that can allow you more peace and less stress in your life. ~Rebecca

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    • thank you Rebecca. I just want this stage over and Al in a better suited area where people understand his disabilities and illness. it is obvious where he is that they do not

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      • I hope you are able to find such a place or work things out with staff at the place he is in. I imagine more moving would be even more stress for the both of you so I hope you’re able to work things out where he is. Stay strong; big cyber-hugz to you!

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  6. Terry, my family and I are praying for you. One of my biggest fears of my PD is, dementia. I can’t focus on that now, but I have to somewhat be prepared. I admire what you do, and find your character as a person inspiring. Be blessed, and encouraged. Parky

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    • thank you so much Parky. Dementia has taken a long time to come into play, and it is still slow which I am thankful for, but it does change so much in both of our lives with this nasty disease

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  7. Terry, there is no fault on your part! You’re just trying to figure out the best for you and the best for Al! It’s confusing and busy and troubeling and worrisome too. Praying for God’s direction and sweet peace in your heart! He gives wisdom to those who ask 🙂

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  8. You must not blame yourself. You made the best decision you could with all the information available. Things would not be easier if Al was home; they would be difficult in a different way.

    Your readers have given lots of good advice but I think the best is to re-read your posts and remind yourself of how you came to this place.

    You continue to be in my prayers; and lots of other people’s, too. x

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  9. as i read your post i thought back to your posts when al was with you. it didn’t seem like you had much choice since you couldn’t get stable help and you couldn’t care for him just on your own. there is also the impression that al wanted to be placed.

    when you have been the person making all the decisions it is often difficult to trust other’s to take that duty over for you. i don’t think there are any easy answers here and i worry that you are going to make yourself sick fretting over this. please take care of yourself and things will work themselves out with time.

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    • I do know I have been very restless lately. I only want Al to be treated with dignity and fair. The facility has made it very clear they do not have time for his jibberish and feel he should move on. I am working on this, but it takes co-operation from all sides without the lies and unreturned phone calls. I will try to take a deep breath. thanks for being my friend

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    • thanks Angel, say a prayer it doesn’t start the big snow until after 3 today. I really need to go to that meeting. it has everything to do with Al getting out of the facility

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  10. Terry my heart aches for you both and my mind is angry as hell…pardon the curse…but it is ridicolous that you have to worry over all of this . The idea that this place doesn’t have a schedule for the clenaliness/clothing of thier patients is an absolute outrage. Your brother and every other person there is a HUMAN BEING!! not some swine to be left to wallow in their sty. GRRRRRRRRR!
    As for them not knowing why he didn’t want to go how absurd! how easy it would have been to say Al where we are going there are no cola products or to even say if we find something I wlll pay with my money (as long as they were not going shopping where those products sold) a little reassurance like that owuld have gone a long way until you could talk to him. As for the call being returned either she is very busy, the importance of a quick response was not conveyed she doesn’t care or she may be checking into the situation for all of the facts before speaking to you.
    sorry for such a long response I know we aren’t supposed to do this but having my father in a facility and having had to move him I can empathize with your dilemma. My prayers are with you Terry and I wish I could give you a big hug and march into the facility and put some people straight!! In the meantime get a cup of tea and try to relax and pray my friend God answers knee mail.:)

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    • I like breaking the rules I guess. I enjoy the lengthy chats. The phone call I was to receive yesterday never came and even not today at noon. I need to go to a meeting today at 2. It has so much to do with Al getting out of the facility. I don’t know if it is wrong or right but I have been praying like crazy for the big snow storm to hold off until I get home, or at least let me drive thru the snow safely. Your suggestions for Al were excellent, too bad no one else at that place can think of them………

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      • You should pray for your needs and those of Al if the stornm comes pray for God to place a protective shield around you. Now I want to suggest you get online and look for the orginazation/government enitity that inspects/regulates the facilities of your state and report the inadequencies you have perceived there. also file a complaint with the Better Business Bureau. I believe you can do all of that anon. good luck my friend keep me informed. send me email if you want to tell me which stat and facility I willsee what I cn do for you. grammielen@gmail.com

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      • I will do this. and I will look into more information on the site. I did save your email also. Thank u so much for caring. You don’t know what this means to me

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  11. Terry, you did need outside help because of the stress you were under physically and emotionally. Maybe this isn’t the best placement, though. I had my mother in a nursing home which was shiny new, beautiful and pristine and was told that they treated everyone there with great respect. Once she was in, we discovered it wasn’t true. They trained people there to be nurses aides but paid them badly, so people came there to be trained and then left for better paying jobs. So, mostly the residents dealt with newly trained nurses or ones not good enough to be hired elsewhere. She was treated horribly and yelled at and was really frightened. We found another place through a recommendation. Its not so shiny but her nurse has been there 26 years and he is devoted to her as is her nurse’s aide. They treat her with respect and kindness. Now there are still issues because its hard to give up your independence; the right to decide when to go to bed or get up, or how much money to take, these are hard things to give up. Al understandably prefers you to the people there. You don’t seem to like them much either. Just weigh what each of you has gained and what you’ve lost before you decide what to do. Is there a better fit for him in another facility? Would you both want to try home care again? ( Those nurses weren’t all that great as I recall). Just my opinion. Hugs and good wishes to you both.

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    • I really appreciate your comment. The problem for my brother in any nursing home is his age. He is much younger than the high percentage of residents, so placing him in a different one won’t fix that problem. He will be interacting in the day program with people more his age and disabilities.
      if at one point he would like to live in the group homes it will be his choice, but at this time we can’t go that route as we have to follow criteria. it is a stepping point. for now the urgency is get him out of there period before he drowns in depression. I am happy if he comes home. I love him more than facilities. I will have much more help than when he was here before also. we will both have 8 hour breaks from each other five days a week. we didn’t have that at all before

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