Who To Trust


Thinking

It’s getting to the place that I have few I can trust. You are thinking gee, what happened to her?

It is just no matter who I talk to anymore whether it is about car tire pressure, or car lots selling cars or even professionals their words are not quite the same as the next persons.

I trust each of my friends here at WP. I trust my very best friend. I trust God.

Are you thinking,what has brought this up? Probably and I will answer.

I called the nursing home and asked how Al had been doing this morning. The nurse said good, no complaints from him. So I had her ask him if he would like me to bring lunch from the DQ and the answer came back yes.

I get there and he is laying on his bed. There is blood spots all over the floor. His bed is wet. He has a bloody rag in his hands and his mustache is filled with blood. I asked,”What happened?”

He starts crying and I do figure out from the pieces I hear him saying that he has had another nose bleed. This is like I don’t even know anymore how many, too many. I go to find out more information from the nurse.

Part of me is upset because there is a dirty pad in his chair filled with blood and left-overs of some type of food. The floor is as I said blood spotted. He is crying. What am I supposed to think.

I couldn’t find the nurse as usual. I go back in to Al and he sees the lunch I brought. He fights with all his power to sit up and the nose goes into more of a run now with the blood. He struggles to get in his wheel chair but does it. He has to use the bathroom so he puts his call light on. We wait a few but no one comes so I go on the hunt again for the aide and the nurse.

I do find the nurse and get the picture of what has been happening. Another nose bleed she says. She says,” I think Al is picking his nose and making it bleed. I stuck a flash light towards the opening of his nostril and I saw a scab.”

Ok I am thinking. So we turn to go check out Al and he is gone. I hear the stool flush so I now know where he is. The nurse calls me a way from the door and whispers, “Watch in the mirror here in the hall.”

I am thinking what? but I watch. Soon Al walks without his walker back to his wheelchair. I am amazed that he did it better than I thought. He stumbled a little but caught himself on whatever was close for him.

She and I walk in and she says, ” He can do more than he is letting on. He just wants your pity.” I said, ” What about the times when I am not here? Does he want my pity then too?” She just looked at me. Al heard all of this. He is so extra sensitive with his feelings. According to the neurologist this is a part of the Parkinson’s.

The nurse tells him,” You are just pulling your sister’s leg.” This really set his emotions off. He started crying. His nose started bleeding more. The  nurse told him,”If you don’t stop the crying I am going to have to send you to the ER to get your nose packed.”

Al tried to quit but the tears just got faster. The tremors went in quad speed. The blizzard he was holding was spilling all over his clothes. His nose was running blood. It was a mess.

The nurse left and an aide came in. Between her and I we went through three wash cloths of blood and a clean outfit. He cried the whole time I was there. So he never ate his lunch and he spilled half of his drink.

This is my opinion. Al has been belittled by his Dad all his life. He has always been very sensitive. Now that the PD is in full swing his sensitivity is so strong that every little word that is attacking him he burst in to tears. The nurse’s words upset him.

I think Al is very very emotional. He gets his feelings hurt pretty easy. Just seeing what had just transpired proved me more right than wrong. I went out in the hall while the aide changed his clothes.

The nurse was waiting outside the door as if she was listening to the inside conversation. She said,” See he is just crying for your pity.”

When he was all cleaned up and it was him and I again I asked him how he could walk to the bathroom without help or the wheelchair. His explanation was this. ” I put on the call light but I can’t always hold it long enough until help gets here. I pee my pants. So I have quit putting the call light on. I can’t make the wheel chair go in the direction I need it to in this small room so I just walk to the bathroom and back to my seat.”

Part of me understood what he was saying but I told him I didn’t like him walking without someone being there with him, but he said, “Sis, I have to go pee and it won’t wait.”

Then he got all confused and told me he couldn’t walk down to the dining room. I told him that he was right. So the conversation and confusion about what to use when to use was all lost.

Getting Al to understand what I am saying is really difficult the more he has PD. I helped him lie down and told him to rest or take a nap. I took his food to the nurse and asked her to label it as he may want it later. I asked her to chart that he ate very little and she asked why. I just walked back to Al’s room without answering.

I know that was rude. I am sorry. I was frustrated. I didn’t know what to believe or who to believe. The nurse came back in to check on his bleeding and told me, ” You have to use tough love.”

I felt one tear from one eye and then one from the other.I didn’t want to show my tears.  I told Al I loved him and that I hoped he would feel better. I said I would be back Tuesday. His room was filled with bloody rags and still spots all over  the floor. The room smelled like stale pee. I turned to walk out and saw the nurse smiling at me. I walked on by.

Who do I trust? Me, the nurse, Al, God, who? My heart may be too involved with Al, I don’t know. All I do know is what I observed today. A mixed up PD guy who didn’t eat, was a bloody mess, and had never stopped crying. Am I too soft on  him? Or does he just have good days and bad? Am I guilty in some way of him being in that wheelchair? Should I have practiced tough love and maybe he would still be walking?

I don’t have the answers. I do wish the nurse would have called me and let me know what was happening. I wasted the time and money on the food that he didn’t eat, and I left just as sad as Al was.

52 thoughts on “Who To Trust

  1. My heart goes out to you terry. I would have totally lost my cool and blasted the nurse for not letting you know exactly what was going on with your brother. It’s hard enough to see him struggle, I can’t imagine how you handle the wondering about what else you’re not being told. God Bless both of you!

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    • I like that you mentioned that I can’t imagine…………..I wonder that all the time. I actually love going in unexpected, and I can see that you would understand why. hugs to you my friend

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    • thank you Ivonne. I needed validation that I am not too soft. It is difficult when there is a brother sister love involved. I sometimes wonder if I could b a nurse and have that rough exterior

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      • Terry, I had one of those tough love mothers and there is a down side to that as well. I think sometimes what Al needs from you is just to know that you love him–whatever is going on with him physical or emotional. And I think you do do that. And when you have to you have been tough as well. But you can not be judge and jury at the same time- So, dont’ be so hard on yourself. There are no rules when dealing with an illness you kind of have to figure it out day by day. And hopefully once you make the move out of the home Al will feel better and so will you.

        🙂

        ivonne

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  2. Terry: The behavior and comments of the staff were not only inappropriate but a violation of Al’s rights as a resident of a long-term care facility. If they act that way towards Al, they’re acting that way towards many others. You can locate your local long-term care ombudsman through this website: http://www.ltcombudsman.org and click on the right hand box to locate an ombudsman in your area – assuming you’re in the United States. . Ombudsmen are advocates for vulnerable adults, such as your brother. Please contact them. If I lived in your area, I would personally check out the situation, but I am an ombudsman in the Pacific Northwest.

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  3. Thank you so much for including my post in yours, but what a horrible experience for you. ‘Tough love’ is part of no care plan for any patient. There is communication, team work and working to the best of everyone’s abilities – patient included. There should never be blame place upon someone in such a fragile position (and that counts for both you and your brother). I really hope things improve for you, you sound like you’re coping very well considering the circumstances.

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    • It is very difficult but I try hard to remain strong. I have shed many tears along with my brother. This Parkinson’s Disease just strips my brother of his life basically. I so appreciate your comment. there are many good nurses out there, but this one I am referring to has no heart

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  4. Terry, I can’t believe the struggle you have and the worries you have to take with you home. That nurse has the total wrong attitude against her job and the patients. They are not there for her and she are there for them.
    I think you should talk to the ombudsman – and also write everything down, when things has happen, time and date .. and what has been said between you and the staff. My thoughts are with you both

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    • You are so right. She is there for Al and all of the others, not the other way around. I am going to have a meeting called. I want to discuss this with the top people. thank u for caring

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  5. Terry,

    You have every right to be upset. I worked in a nursing home, and the nurse’s behavior was unacceptable. You are Al’s advocate, and though it’s a heavy load, God has chosen you to care for him. Therefore, I want to offer you a few suggestions.

    *** Firstly, I would request another care plan meeting, with the Director of Nursing, the Executive Director, the Social Worker, and the Staff Educator present.
    *** Secondly, I would report the nurse’s behavior and what you saw – actually, print your post and read it to them, as you wrote it immediately after, and it is very detailed.
    ***** Before the meeting, request a copy of both the facility’s “Resident Rights” handout as well as the State’s (Actually, you may be able to access the State Resident’s Rights online. I know we are able to do so here in Delaware, and I can’t imagine that other, bigger states don’t offer that as well.) *****
    ***** Take the Resident Rights handout home and highlight all that have been violated and bring it with you when you come to the meeting. *****
    *** Tell them that they need to educate all of their staff – RN’s, LPN’s, CNA’s, GNA’s, housekeeping staff, maintenance, security, secretaries and receptionists, on the behavioral issues that arise with residents who have Parkinson’s Disease, dementia and other dementia related diseases, so that staff will know how to interact with residents and maintain the resident’s dignity, which is a fundamental right, within the next 4 weeks.
    *** Tell them that you want documentation of this in-service, and that the training must be mandatory.
    *** After the mandatory education, ask them what steps they are taking to make improvements within the facility for Al and the other residents.
    *** Document in Al’s care plan the necessary changes (i.e. – Staff is to knock before entering Al’s room, as it is his home; Staff are not to talk about Al’s progress or lack of progress in his presence, as though he isn’t there; Staff is to respond to Al’s call bell within three minutes of it ringing; Staff is to be sensitive to Al’s changing moods, understanding that he is not “playing on anyone’s sympathies”, but that this is a normal progression of the disease, and he is frightened; etc.)
    *** If they refuse any of your requests, including the mandatory in-service, tell them that you are going to submit both a verbal and written report of what has happened to the State.

    I hope this is helpful, Terry. I know how hard this is on you, but what you have described here is simply unacceptable, and they must honor Al’s rights. I know you can do this, and you will not only be helping Al, you will be helping the other residents of the facility as well, by doing this. Please let me know if I can be of any further help to you Terry, as you stand up for your brother. Finally, I just want to leave you with this scripture to help you as you care for your brother:

    “There will always be poor people in the land. Therefore I command you to be openhanded toward your brothers and toward the poor and needy in your land.” ~ Deuteronomy 15:11 NIV ~

    Many blessings and much love to you,
    Cheryl

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    • I have printed off your comment and will call a meeting together. I would not know what to do without your help. I would sit here as I do and fret about his care. God bless you for all of your help. I so appreciate it. big hugs and thank u for the verse

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      • Lots of love to you Terry, if I wasn’t here to help, the Lord would just send someone else, because He loves you and He loves Al, and He wants what’s best for you both.

        Love,
        Cheryl

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  6. Terry as a med student, I totally agree with the other commenters. You should report the nurse or talk to her with the same “tough love” as she says. She has no right to tell you how to deal with your brother. Not only did she neglected to tell you what was happening, she dismissed the fact of this true state. I brakes my heart to see that professionals as her do not have the advocacy or vocation for the patients the have. If she doesn’t know how to handle these kinds of situations, she should leave the job. As for the nursing home, they’re not doing a very good job supervising the nursing staff. You should have told her to go get a mop and clean his room immediately!

    My heart goes to you and Al. Hugs and strength always.

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    • thank you so much. I hated leaving him with his room looking the way it did. urine stained pads, blood on the floor,wet bed from all the wet wash cloths. It made me sick. I wish I knew that I could have said something to her because I would. I thought, well she is the nurse so I better not

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      • It’s his patient’s right to have a clean room. It discusses me when nurses don’t attend patients as the should. I’m gonna be one grumpy doctor when it comes to that. If it were my hubby, I would have screamed the H.E. L.L. to her (sorry for the language, I’m mad).

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      • those nurses don’t answer lights. I have waited with Al before while the light goes off for several minutes. I usually end up going to find an aide or doing what Al needs done

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    • Unfortunately I think you found that in the service field as with so many other areas, there are some who care and try to truly give the best…but so many just go through the motions and tell you what you want to hear. They are either burned out or just don’t care any longer. For those of us that have been in the workforce for so many years it is easy to see the lack of a work ethic by many filling jobs where we take for granted that they care. I wish I could say it would be easy to find another facility that would care for him better, but I’d be lying to myself also.

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      • I know it’s not always the case, but as I get more close to graduate from med school, I see more nursing staff lacking of care for patients. And I work in a Pediatric Ward! It should be the other way, but it is an idealistic thought though.

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      • I understand that this is the case, but I feel since they are working with sick to dying patients, they may need to take a break. Me on the other side of the coin is already in emotional pain so I don’t want to deal with the bad staff. I understand there are good and bad in all work places. I still prefer the good and maybe the bad ones need refresher courses or more vacations

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      • I totally agree with you Vow,,,,,,,,,,,,,,,,,,,,,,you took the words right out of my mouth. I have been in the medical field for 23 years and I swear I have seen it all, but then some staff will come along and surprise me. I still can’t believe a few hours later that she talked like that to him and in front of him. She hurt me, well my emotions and what she did to Al’s made me crumble inside for him

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  7. After reading this post I was so very angry, and I’ve never even met you or Al! I agree with all of the comments, and I too feel that the nurse’s behavior was absolutely unacceptable. What difference does it make if Al WAS acting the way he was to gain your pity? That’s none of the nurse’s business. She probably thinks Al compulsively makes his nose keep bleeding just to inconvenience her.
    No wonder Al is depressed. Even if he is just trying to get your pity, it would probably be because you’re the only one in his life that shows him any compassion at all.
    Okay, I’m going to stop ranting — I would have lost it if any place had treated my dear brother like that. You have a lot of patience and dignity about you, and you’re the very type of person that tends to hear the still small voice of God (unlike some of us hotheads, lol), so I feel certain that He will guide you in the way you need to proceed. Peace and joy to you and Al, sweetie.

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  8. Wow. You held it together more than I would have. I would have gone ballistic after seeing all the blood. Thats distressing for anyone walking by, not to mention hazardous… What if he had HIV or was anemic? As for the nurse saying tough love.. I don’t care he has blood on him on his clothes on the floor and no one his coming to help him use the bathroom.. and he needs tough love really? I think that the nurses need to go back to school to treat patients like actual people. Sorry I’m upset for you its just I’m imagining myself in that position and regardless of his temper or what they think is a pity act they are there to care for him period. I understand he maybe more demanding but what if the room was on fire or he had broken his arm? I would hate to imagine how painful a wait would be for an emergency like that. I pray you can get him out of that place quickly. I feel sorry the other families whose loved ones are there and may god have mercy on those aides and nurses because they aren’t showing any to their supposed patients.

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    • thank you for standing with me on this. I feel the same way and I can’t wait to get him out of there. You are right, what if I was a visitor and had touched the blood. Staff doesn’t have to tell anyone anymore if there is HIV in the buildings. Thank goodness Al doesn’t have it but what if…………

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  9. Does it still look like you are going to be able to move Al, Terry? I sure hope so. My daughter is completely different from your Al, but whenever someone wanted to do the ‘tough love’ thing, it just backfired. I found that it worked best to just believe that they are doing the best they can. . .and love them. God bless you, Terry , and show Himself strong on you and Al’s behalf!

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    • when someone shows Al tough love it backfires also. He cries and cries. His tremors worsen three fold. His comprehension doesn’t catch up so he is very confused. It is just awful

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  10. Terry I am so angry rigt now I can barely type. I sure hope you contact the state as mentioned by so many others. Those people have no respect for other human beings or pride in themselves to treat others the way they have treated Al. Do not become defeated or depressed over this. Your love for Al will give you the strength to turn this facility into the state, and perhaps help others that are being mistreated there. I would suggest taking photos with your phone or a disposabale camera (discreetely) from now on at each visit and document, document , document!!

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    • thank you Len. I was hoping my softness for my brother was not the only thing I was seeing. the whole thing upset me so much, but the facility likes to place blame on me saying I am not tough enough

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      • You can never be tough enough when you have to trust the care of a loved one to another. they are there to help and take care of him properly not place blame, guilt etc on you or the patient! If that is their attitude then they need a very sharp tongue lashing letting them know what and who their responsibilities are to. Not some darn Friday paycheck they are dealing with but human beings. Please Terry do as suggested in these comments don’t let them get away with ANYTHING for any amount of time!!

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  11. My prayer is that the Lord would work circumstances so that you could come to understand what is the real truth in these situations.
    I realize it is very hard for you because you can’t be with Al 24/7 and see everything that takes place. During your absences you have to rely on the accounts of the nurses and Al to try to understand what is taking place in his treatment and care. It tough to go through.
    Just as you said in the beginning of your posting… the Lord is the One that you can trust in during times like this. Sometimes I know it seems as if He is the only One.
    Keep trusting Him and seek His intervention in this situation…. as it unfolds day by day He will direct you and lead you. Lord bless.

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    • I don’t like it because I am getting this way myself. I used to be so trusting. I also hate saying it but the nursing home is one big issue why I feel I can’t trust anyone but myself

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  12. We found my Mom is such predicaments at times…and to find someone was always a bitch…excuse my mouth…but, I so remember…No one can love them the way we do…and yes!..we do take it personal…Thank goodness…YOU GO GIRL!…Al needs you …and deserves better!

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  13. Giving you a big hug because I went through this sort of brain and body numbing hell when both of my parents were in nursing homes. Who could I trust and when. What was something out of my control and what could I do something about….it was hard and I cried and prayed a lot!!!!!!! I pray that you be sustained and given strength and wisdom.

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