Bad To Worse


English: 'A pain stabbed my heart as it did ev...

I received a call today on my drive to my water class. When I entered the front doors, I broke down crying. People stared but I didn’t care. Let them stare, they did not know me. I went to my class and my teacher looked at me and I smiled, but she sensed, I guess, that something is wrong. I told her a tiny piece and she said all will be alright.

For a split second I wanted to scream at her saying no it isn’t. Quit telling me it is going to be alright. It is never going to get better. I lied and kept smiling and told her I was sure it would be.

I did my hour of class. I tried real hard to pretend to enjoy it but all the while I kept thinking back to the recent phone call.

The call went something like this, Hello Terry? Yes this is she. I just wanted to let you know that Al is still reacting to everything. He is on a big pity party. He wants all of our attention and we are too big of a company to do this for him. He takes everything we say personally instead of the way we are intending it to be. I am afraid we can not tolerate the tears and anger that he shows. He has sworn at staff. We are going to have to find some other resources for him. I said, I am driving and after class I will be in. Thank-you for calling.

I went in after class and saw him heading back to his room from lunch. I talked to the nurse for a moment as I waited for him to make his way closer. She told me that she will not tolerate his pain being used for excuses of bad behavior. She explained that she has an autistic child at home who is 10 and she does the tough love thing, and she will do this for Al also. I just looked at her and continued to wait on Al.

When we got to his room I did discuss with him about behaviors and what was told to me. He started crying. I told him I certainly understand his pain but he can not be rude to others because of the pain. He asked what he did or had said and I told him what was explained to me. He didn’t remember any of it and he cried harder.

He told me that when he gets to the dining room he can not get himself under the dining table and he asked for help like I said to do, but they told him he could do it himself. I was so exhausted. I hate to bring me into the story. But the he said and they said just drive me crazy.

I told him to hang on. I said I was going to go get the social worker and bring her down so the three of us could sort through this. I left and went to her office. She welcomed me in. This is what I heard from this end.

Al made a comment to another resident that he was stupid and didn’t know how to get out-of-the-way. Fortunately for Al the resident was hard of hearing or we would have to report this to state. He is causing scenes by crying and being overly sensitive. We can not have this here. We are going to have to find another place for him to go.

She gets on the phone and makes a call, then the phone is handed to me.

We are going to meet with you Terry at your home one day next week. We have a couple of choices. He can go to a group home and I am placing him on the waiting list as we speak, or he can be placed on a Medicaid Waiver and he will be returned back to his home. It is possible that the waiver will make changes to your home so that wheel chairs can fit everywhere. It is possible that he will have help through the waiver for caregiver help.

The social service director said that it was two weeks until Al starts the special funding program of going out, but he may not make it until that time gets here.  She told me to take a vacation and they would watch over him better than normal while I was gone. She stated that he could live for years to come and it would be a long time before I got another break.

She handed me a brand new book free of charge that talks about Parkinson’s/Dementia. She told me to go home and read it. She ended the conversation by saying,

I have to run some errands. I need to go to the bank and cash my check. I will let you know when I get a phone call.

I feel like placing him there was a mistake. They pushed therapy on his legs without my approval. He is now in more pain than when he was home. They made me feel like it was abnormal for Al to want one on one attention and if he wanted that, he needed to go else where.

I realize the Parkinson’s progresses but I have to admit I have never seen him as emotionally upset and crying and angry as I see him now. I can’t blame the facility. In fact I can’t pin point anyone because I don’t know why this is happening. All I know is everything is a mess. They have taken all of his money. He may come home or he may be placed with moderately to severe mental handicapped people.

I am not crying now. I already did that. I am more numb than anything. I turn my thoughts around in circles seeing nothing anywhere. I am tired, I am worn down, and I realize I am not alone, I have all of you. But, as I sit here, I sure feel alone.

61 thoughts on “Bad To Worse

  1. Oh, Terry, I am so sorry. This is so much for you and Al to process. Yes, take a break for yourself. You need it no matter what happens next. But also, p,ease consider talki g to the county social services dept. the social worker at the facility works for the facility, and may not be able to see ALL of the options. Please…talk to someone at hospice. Talki g to hospice does not mean that Al gets a timer ticking down for him. It does not mean you wish he were gone. But they have very skilled and compassionate people who are used to hard family times like what you are going through.

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    • Talking to hospice is an excellent suggestion, Terry. The people who work in hospice are called to this work, it’s like a ministry for them, and they are skilled, compassionate, and non-judgmental. You need professional advice and hospice people will be able to give you that in a kind, practical, and professional way. And as BBC points out, talking to them does not mean placing Al in hospice. It’s just gathering information from another source. Holding you both in Love and Light! xoM

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      • I have not heard the word hospice used by the facility. all i hear is he will live for a long time. i can call hospice again on Tuesday but they keep refusing to help me because Al has no death time

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      • Yes. Perhaps you can call and see if they’ll just talk to you. It’s not a matter of placing Al in hospice, it’s a matter of looking at the situation from a different perspective. Ask them to help you with that. xoM

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    • thank you. the social worker is now more involved more than anything. i just don’t want things to go so fast that something slips by me and a change is made i would not approve of. this is a very difficult time for me, let me tell you

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  2. Terry, I think his pain had been the same if he had stayed with you .. it’s the cause of his illness. Maybe this wouldn’t happen if they didn’t change things around him and things are not like he was used too. Have they thought about that … god, is it never going to stop for you – what you do, Terry .. don’t take him home, because it’s going to be harder and harder for you to care for him .. and then he has to be sent somewhere else. He are upset and lost because of the changes to his life at the home, that is my guess. Think with the brain now, Terry … not the heart. With you in my thoughts.

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    • the sad thing is they are not leaving me choices, they want him out, and it will be like a meat market, first come first served. i hate the whole thing. i wish you could tell this facility what you told me. it is Al’s illness that is changing him, causing the attitude change, but they think i am totally full of crap. they think he is just demanding time which they don’t have for him

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  3. *hugs tightly* I am so sorry. I wish there was something I could say or do to help make things better. That’s just unreal they drain his account and now after the big talk they say they don’t want to deal with him. Why couldn’t they have said that at the meeting? Just unbelievable.

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  4. I feel terrible for you and for Al. He’s lucky to have you there. I’ve learned the hard way that a person as sick as he is needs an advocate who will stand up for him, question the caregivers and demand answers. You did what you had to do when you placed him there. I’ll be praying for you both.

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  5. Medicaid waiver is a very good program Terry and might work well for Al. My son lives in an independent living area with his own apartment, and is on the waiver program. They make sure he gets his med., help clean his apt., take him where he needs to go, shopping, dr. etc, and even help with his meals. My son’s waiver staff is only there two hours twice a day, but they have the program so that if they need up to eight hours a day, it is available. He has had this several years and it enables him to live on his own. If they would come to your home and do the same thing, make it wheelchair accessible and provide the care so that you have the freedom and he has support, this might be the best thing. My son has also been in a group home, some of them are very good and some are very bad, you really have to visit and check them out. God bless you my friend.

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      • Your State Dept. of human services may be able to help you, but also your state advocate for the disabled. They can also evaluate the way that the nursing home is treating Al. They are there to advocate for the disabled, not as representatives of anyone else.But if the nursing home is getting in touch with them, it might be faster just to do it that way. I would also make sure that you have guardianship of Al, otherwise, you may be cut out of the decision making. A good place will not cut you out, but those that are after money and care nothing for person, may not care in the least what you think if they gain total control and can get a judge to give them guardianship. I don’t know if Friendship Services have programs in your state, but you could start looking at place that deal with the disabled, but also hospice might be even more appropriate if the stage of his parkinsons is too far along.

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  6. I thought that most homes had separate care for people that need ‘light’ care and those that need ‘heavy’ care ..the latter Al falls under and that the staff were prepare with staff to handle each.

    I really can’t see you being able to care for him at home even with alterations to the home. I don’t know how big it is but I have a feeling not terribly so… You ‘might’ get care for him at home but are they going to sit around for a number of hours in your home in order to do what? And you are totally having a stranger in your home….

    We had to recognize when we could no longer care for our Mother and it was not just because of caring for her but there was also the fact of still being able to live ourselves a fairly normal life.

    All you can do is read and talk and see what the places are that they are referring to and I would also question whether or not they can just arbitrarily tell him he has to go?? They accepted him as a patient and are they saying they cannot ever care for someone with Al’s deficiencies.?

    Anyway, don’t know if I’ve helped or not but you know my prayers and many others’ will be with you….Diane

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    • I am so hurt right now. I refuse to believe that Al is being obnoxious on purpose. he is not like that. that is there excuse though that they are giving me. he wants more than they can give. they are not his babysitter is what they are really saying

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  7. Being the sole person responsible for caregiving for Al is a very tough position to be in and the choices aren’t always easy ones. Doing your best is all you can do, and that’s what you’ve done. No second guessing. No regrets. You work with the information you have and sometimes the person cared for reaches a point where they don’t understand anything at all, and that’s when the going gets a little tougher.

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  8. Terry – I don’t know what state you live in but I STRONGLY suggest that you contact your area’s local LTC Ombudsman. Here’s the national website wherein you can find the ombudsman closest to where you live: http://www.ltcombudsman.org. I am a LTC Ombudsman in Washington State and I can tell you right now that discharging/throwing out a resident is supposed to be the most difficult thing a facility can do – and for good reason. They can not just say, “we can’t take care of him anymore; or “he says bad things to people” etc. Unless you really want your dad to live elsewhere, I would absolutely get in touch with the LTC Ombudsman and find out your dad’s, and your, rights regarding your situation. I’m shocked that the social worker acted as she did – not professional, not ethical. Please get the help that you and your dad need. If he’s moved to another building, they’re just moving the “problem” to another building for them to handle, and so on and so forth. Facilities are supposed to make reasonable accommodation for each of their residents. From what you’ve told us – sounds like they just gave up; took the easy way out for THEM but not for your dad, not for you.

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  9. I sit here shaking my head… I just hate these facilities…that don’t really understand the illnesses people have…I think they just want everything to go hunky dory…and basicly want the patient’s people …
    like you…to just be there all of the time to care of them…I saw it with my Mom…You pay them good …more than good!…money and the care is pitiful!…All those “smart” people with all of the answers…
    but, can’t take care of a human being who is suffering so…SO SAD!…makes me angry!…and I don’t know what to say to you…mkg

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  10. group homes are a great option! he would get more personal care while having more freedom to have the things he loves around him. this could really be a great answer for your situation. hoping and believing that things are going to be good for you and al.

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  11. Please don’t feel you made a mistake, I’m sure you didn’t. Imagine how hard it would have been to deal with all this on your own.

    Now that those in the mediacal profession are saying that they can’t handle the pressure I hope that you will get the support you need for the next stage. Love and hugs.

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  12. I’m thinking of you and Al. Please look for other alternatives to taking him back home. Even with help, if a team of professional caregivers is saying caring for him is too much, you can’t expect to take it on yourself. Your best bet at helping Al is to stay strong and rested. If he is home, you will not be able to care for him as well as if he is placed in the right environment. Stay strong and hopeful.

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    • I do understand this. There is a part of me that is afraid to bring him home also. I am looking for alternatives. I hope God helps in this matter, because I am not sure if I can do it alone even with some hours given by others

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  13. Each path we take is tumultuous, confusing, and overwhelming. Sometimes we believe that if we had taken a different course, something different would have resulted. You made the best decision for both of you at the time, you couldn’t have known how the outcome would be. It’s a learning experience for both of you, which yes, has costs and implications, but this is part of life as we live it. Please be gently with yourself for not knowing what you couldn’t have known, and as you weigh the options, look into the various possibilities, know that God is with you, even when you think you are alone. You’re not. So much prayer and hugs to you dearest Terry.

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  14. Terry, remember the web sites I gave you for the ombudsman for health care and give them a call. They act as advocates and right now both you and Al need an advocate to get this straightened out.

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  15. Al is not only in pain but the changes around him are causing frustration and anxiety which exacperates the pain. Please get him out of there asap !!! If they are that intolerant and do not realize (as professionals interested in caregiving should be) that this is the problem not his obnoxiousness then it is NOT the place for him. Please Terry use the links given you , contact all state resources even if they don’t sound by the title that they could help, they may know where to direct you. Once you can get over this hurdle and get him placed properly things will smooth out I promise. cyber-hug and here is a box of tissues, a scented candle a little bubble bath now go relax in a hot tub have a wonderfully soul cleansing cry and then get some rest tomorrow will be a better day. Don’t forget God loves you and will give you the strength you need. Love and prayers my friend.

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  16. Terry,

    My heart goes out to you, and my prayers are with you. This is a terrible situation, filled with heartache and frustration for both you and Al. But I don’t need to tell you that. :*(

    I wish I could present an answer to help you, but I don’t have one. Though, from reading prior comments, there are some I do encourage you to try. The Ombudsman can actually be a good starting point, as well as contacting any support groups for disability. They may be able to help you, and if not, they will be able to point you in the right direction to resources that can.

    I also would strongly recommend contacting a hospice group or two. As BBC and Margarita suggested, it does not mean that Al is going into hospice, but they can look at the situation and help you come up with a resolution that is good for all people – including you! If you don’t know one, local churches often have a way to find people that work hospice.

    Last, but certainly not least, please continue to pray. Though it may seem like God is putting you through hell at this moment, sometimes that is when we need His Strength the most. I am sure I am not the only one praying with you and for you, Terry. Please keep that in mind during the darkest points.

    God bless you.

    – Tara

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    • thank you so much Tara. This is draining me, I will admit. I have spoken to God and I sure hope he is listening, because I don’t know where else to turn. I will call Hospice tomorrow and see what they have to say. I so appreciate your support. Words can not even describe how much your comment means to me

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  17. Hi terry! In one way your probably relieved to have him out of there. Yet on another, what now? You can love your brother as much you can…but what abut, Terry? Who will look out for you?
    This is a terrible situation for both of you! My heart goes out to you. I hope the universe knows what it’s doing! Hugs from me to you! Paula xxxx

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    • yes, in one way i am glad but now what to do is the ultimate question. I don’t know about me. I seek support and friendship from all of you here at WP. I try to find comfort in my own family. I try not to think too much about me

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  18. May God bless you and Terry both. I was the sole caregiver for my father who just died in January from Parkinson’s. It is a long and difficult journey for everyone. I can not imagine your grief not knowing if he is happy and enjoying life makes it so much harder.You are both in my prayers.

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    • thank you so much. Parkinson’s is definitely a tough illness and unbeatable. I do my best as his sister to make sure he is as pain free as possible. he struggles with walking more and more. sometimes he has to use his wheelchair. he struggles with separating words so i can understand him and eating is a big issue. he knows what to do but can’t get cups to his mouth easily and his silver ware and tremors are getting so bad. thank you so much for being here. i only have you bloggers as my support system so I hope to talk to you again. Terry

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