I Was Told I am JUST a Sister

I hope I don’t take more than one page to get out all I need and have to get out. This morning I awoke to a nice calm morning. But things change as you know. We never quite know what each day holds out to us. I guess that is where we really need to count our blessing other than those big moments.

I was drinking my coffee and talking to some MSA friends on here when the phone rang. It was the Hospice Hospital. The doctor was on the other end of the line. She said that she was going to keep Al another 24 hours as they had made a few medication adjustments and wanted to make sure he would be alright.

This is cool. I would hate for him to come home a mess. So he is coming home tomorrow. The next few sentences out of her mouth began rubbing me the wrong way. Soon I was frustrated then I went from that to plain old angry.

She told me Al was doing real good. She explained how their nurse aide had said he walked four steps and had no issues. This is when I started to become frustrated. Al doesn’t take four steps here at home. In fact he does need to take three steps to get from his wheelchair to the shower chair but he gets very upset because it hurts his legs and feet so bad.

Al looks like he is walking on his heels because of his feet contracting from this disease. I see his heels and they are so red. I do try to get him to continue with this as long as possible because he gets so much cleaner when he gets a shower over a bed bath.

She told me that he became upset and angry over a football game last night so she gave him one of his new medications and that didn’t work; so she doubled the dose and then he became quiet.

Alright, I am just listening and not speaking as she goes on to tell me how amazing it is that he is so good. She then changes the topic to stating she had called Al’s regular Hospice nurse and that nurse tells her that Al really isn’t declining much. She says he is  pretty much the same as when he started Hospice.

I think my eyes probably got big as my daughter always tells me when I start to get upset. She goes from there to telling me that I need to start remembering that she is the doctor and all I am is the sister.

She stated in no uncertain terms that I directly disobeyed her orders to double up Al’s pain medication and then I quit being quiet. I told her that I had went up to almost double the first time she wanted it upped on Thanksgiving Eve. But after I saw how he changed and he started hitting himself and screaming and cussing I was not doubling the dose within an hour as she wanted.

I explained that I did not want to see what damage he could do to himself over this. I asked her to try some other medicine but she was persistent even after Al was beating himself up.

So on the phone she was scolding me reminding me that I am nothing compared to her. Her next blast of words were that he isn’t declining for what he needs to be. She said she was having a meeting this Thursday with Al’s regular Hospice nurse, who already told her this morning that Al isn’t declining and she was 90% sure she was going to release Al from Hospice.

My heart sunk. I know what I see here. He has gone from five days at Day Program down to two half-days because he is declining and becoming weaker. He is almost 90% bed bound except on Day Program days.

He can no longer stand more than a few seconds and when he does it is on his heels because of his feet contracting. He has to be fed liquids and foods about 75% of the time. Last month he could still feed himself most of the time as long as it was finger foods.

His medications have been changing all the time because pain continues to get worse. His entire body is contracting. His head hangs on his chest. You can barely hear or understand what he is saying.

But according to the doctor he is not declining. She said that he will probably have a few more months to live. All of a sudden I was enraged. I felt although I can not prove it that this was to get back at me for not following her orders, since she did make that perfectly clear.

She stated that she would only release him if I promised to her in writing that I would follow all of her orders when he did come home until he was dismissed from Hospice.

All I could think of is I am going to be forced to place him in a nursing home. Why? Because it takes a lot of money to purchase briefs and pads.

They send a case at a time when they send his briefs. He wears two types, pull-ups for Day Program and tab types for when he is home in bed. He also uses quite a few chux pads. The bill is about two hundred dollars every couple of weeks. I can’t afford that at all. I already pay for what ever he needs here at home, food, clothing, anything that Hospice or Medicare/Medicaid doesn’t cover.

She said that she will let me know this Thursday her final decision. I hung up and sat here and almost started crying a pond of tears but I had to leave to go to the pharmacy to pick-up my medications for myself since Al will be home tomorrow I won’t be able to get out as easily.

When I went to the pharmacy the owners and I were talking about it and they told me to talk to the Hospice right here in town. I asked them, ” Why should I?  If Medicare won’t consider him acceptable in another county, they won’t here either.”

The owner convinced me to at least try. Just run over there and talk to them is what he said. I grabbed some lunch because I had forgotten to eat breakfast in the chaos of things. Then I went over there.

I was very upfront and honest. I explained everything that had been going on today and for the past six month history. She asked me if the doctors had ordered gel pain medications and I said no, and she wondered why.

She said from everything I was saying he is declining and they accepted Al in their Hospice care. We hugged and I told her as soon as I got home I would call the other Hospice and tell them the new Hospice information, which I did.

Now I am in waiting time. Waiting for Al to come home. Waiting for the two Hospices to talk to each other for dismissal and admitting. He will still get three showers a week. He will get a nurse in this area for visits. I will even get home maker time hours for me. From what I learned they will send someone out to tidy up his room or something.

So I had no trouble calling the now Hospice. If I had to do it over again, I wouldn’t change a thing. I may be the sister but I know how he reacted to the increase of medication. Even the Hospice nurse that was here was shocked at how it was a negative reaction to the increase of meds.

I know in my heart this doctor is upset with me because I didn’t follow orders, but hey, this is a real person, and my brother. He is just not another case. So I am calmer now and this is good for all around. I made the right decision and as far as the Hospice Doctor is concerned…………she needs to remember why she became a doctor. You just can’t shut up noisy patients at any expense, pain is pain no matter what title you hold.M.S.A badgeM.S.A. logoal and rhino4

43 thoughts on “I Was Told I am JUST a Sister

  1. Well done just a sister because “A man (or woman) would fight ten times harder for their family than a man (or woman) coming in from the outside” and you proved that, because you are so much more than “Just a sister”


  2. I think that I would take an extra step once he is transferred, Terry, and report your experience with as much documentation as you can to the state accreditation board. The Doctor has let her ego get in the way and she needs reporting. Family is the first to notice changes and she knows this, but you need to file a complaint to the board of nursing if the nurse has given the Dr. a report like this. This is patently malpractice on her part and she must be held accountable. If this is not the only case where she has done this and it has been reported, perhaps she will lose her license. She needs to be reminded that she can and will be held accountable for her actions.
    But God is working in getting him the care he needs and even closer to you my friend. God bless and I will keep you in my prayers.


    • I happen to agree with you. Terry, you need to sit down and write everything out, very factual, report this doctor and the Hospice, and send a copy of your documentation to the physician as well…I would have asked her, so, you would have rather I called you and asked you whether or not to double Al’s medication once I described his reaction to it yes? And you would have sent a nurse here to me to assess the situation as it was happening right then, correct? Can you honestly tell me any reason you think I would try to harm Al in any way? Have you yourself taken care of a long term patient yourself at home and have real experience in this arena? And, I would like you to explain to me exactly why you think I would lie. I am not a liar. I don’t lie. What would I have to gain by doubling Al’s medication given the reaction? And would you personally as a physician have accepted fully the responsibility of your instructions at that point?? I would definitely report the physician, and I would also report to them that she is threatening you as well. Sit down and write everything out Terry, ASAP, because if they don’t get to this until later down the road, and you haven’t documented it, the first question they will ask you is are you 100% sure your memory is accurate, as now at this late date it was awhile ago. 🙂 I do not at all like the high handedness of this physician, I would have just looked at her and said, hey! I don’t work for you!! I work for my brother, and questions? Is she always immediately available to help you? I don’t think so 🙂 I am very glad you spoke to the other hospice in town, that’s good, they gave you some very reasonable normal input.


      • Agree as well. Being a doctor doesn’t make her God (though I know a few young doc’s who think it does). They need to be made aware that they are servants regardless how highly paid. I’d hate to be a gut plumber. My hat off to you who does the hard work, out of love for your brother.

        Second opinions are there so that docs like these don’t get their head stuck too high in the clouds.


      • Thank you so much Carol and Green. I appreciate your support in your comments. You both are right. Just because they are doctors, doesn’t mean there is not room for growth, especially in the bed side area. I hope this Hospice will be different, nicer.


    • The bottom line on this too, legally, is did the physician and the nurse both chart all of this in Al’s charts…don’t ask them, but it will come up and they will be meticulously questioned about their charts, and they must produce those charts 🙂


  3. I totally agree with loopyloo, take that extra step and report her. I will tell you that I had a dr at one time that would leave patients sit for 45 mins to an hour after their scheduled appt time then when put in the room another 45 mins to an hour before she would come in for her ten mins. I went through this multiple times as did others. The last time I was in that office I did the usual waiting and once put in the room was in there forty minutes when I suddenly heard her laughing in the room next door which turned out to be her office, she and her nurse were having lunch laughing and cutting up, I went to the desk and asked how much longer and was told “she is with another patient” I went back to the room and waited another fifteen minutes, making sure I was hearing what I was hearing. The laughing and eating continued, I walked out of that office went home and filed my complaint. Come to find out I was one of twenty complaints for misconduct of this dr as well as two malpractice suits, she is no longer practicing medicine. I received a letter from her shortly after her medical license was removed stating she was sorry for the care she did not give me.
    All of this to say please do as loopy suggested you don’t know how many others may have filed complaints and/or how many lives you may keep from dying or mistreated.
    Proud of you for doing as the pharmacy suggested and getting Al the care to continue with a better place.


  4. You’re not just the sister my friend…you’re THE sister. Amazing and frustrating how doctors can sound so ”stupid” and unprofessionnal sometimes! As if they know everything there is to know about our lives. Be strong and keep your chin up Terry, you’re doing a wonderful job…all my best to you and Al.


  5. So proud of you! You are the person who knows Al best of all the world. Don’t let them put you down! You made great choices today. I hope things continue to go better for you and for Al. Prayers for both of you!


    • thank you so much. When someone is sick that we love I don’t know why the medical team sometimes is the worst and hardest to get along with, but I am glad, so glad that we are able to go to another Hospice


  6. Excuse me-just his sister?
    You are not just his sister-you are his voice and the one who is there 24-7 through the good and the bad.
    I was told by the almighty god dr that I was just mu hubbys wife and told how it was going to be and I told him that he better shut his mouth as he worked for me and had no legal right to speak to me that way.
    There are laws about how a dr or nurse can talk to you and I seriously would consider calling an advocate.
    Since we use the VA I have several advocates.
    The Dr, and sure as heck not the nurse, do not talk to me or hubbys caregivers that way.
    Remember these people work for you and your brother.
    Looks for an advocate ad they will help you free of charge.
    It is illegal to over medicate any patient and also to speak in a personal abusive manner to family or caregivers of that patient who do not work for the facility.
    I used to be afraid of these god drs, and they are not all like that. Hubby has some very caring drs.
    It finally got tot the point where they didn”t believe him and one even told me to shut up in the office that I was not the patient and that was the last time I took any crap from the god drs.
    I am grateful for just about all of hubbys drs but have had my share of misdirected saints.
    Hope you have a good evening and Al gets home tomorrow without any more bossiness from the dr.


    • Al is home as of this morning but he is miserable. They have him pretty drugged up and he is not acting like himself. He can’t see very well now. He says everything is blurry. He can’t even pick up his toy vintage cars. It makes me sick


  7. You are so much more than “just” anything, Terry. I’m sorry you were talked to as you were, but I’m glad you know the truth in your heart. What you do for Al every day is amazing, and no one knows better than you what changes Al has gone through. I am glad you found people who listen to you and trust what you see every day with your brother. He deserves the best care he can get, and that only comes when you can talk to the doctors and know they are going to trust you to be their eyes when they aren’t there to see what’s happening. You and Al both deserved better, and I’m happy that was provided for you today. Everything seems to weave together just as it should, even though we can’t always what’s happening in the process.

    Blessings to you and Al! Have a peaceful night!


    • Thank you so much Stephanie. It is definitely a tough job emotionally watching what is happening and knowing my hands are tied to a point. It just breaks my heart to have him keep suffering on and on


  8. When my dad was in hospice he rallied for a few days and then got worse again and died soon after he got home. He was in hospice and I remember one nurse let his head fall back rather suddenly and his wife was shocked and outraged. People like to criticize who see the reality and kind of are in denial. That really is unfair to you, because they are treating you as if they have special insight and it is your right and prerogative to voice your concerns, even with the doctor and it is her job to listen.

    My prayers are with you so much. I remember holding my dad’s hand as he slipped peacefully away.


    • I am so very sorry for the loss of your Dad and the treatment in the final days. Sometimes a refresher course in the area of study needs to be taken. To remember why their choice was made. I held my Dad’s hand when he passed also. Memories I will carry with me to my own grave. God bless, so glad you are my friend


  9. Kudos to you for moving hospices! A doctor like that deserves to lose her patients to better qualified colleagues. Yes, do report her. People accept too much rubbish from the med community without giving resistance. I have a friend who was nearly bullied into having (unnecessary) surgery on her new-born baby. The nurses in the maternity ward advised her (to the doctors’ disgust) that legally if she doesn’t sign the consent form they cannot touch her baby. How’s that for you?


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