If You've Had To Help Relatives Make Medical Decisions For Others, Please Tell Me How The Heck You Keep Everyone On The

[Atur]

same page. My Dad is back in the hospital and is refusing meds that keep his ammonia level low and keep him functioning. Without the meds, he doesn't know who he is or where he is, much less what is going on with him. Today, I had to make decisions for him, because my Mom wasn't sure.(we both have medical power of attorney.) This isn't a matter of life support, his ammonia is too high. He's refusing meds because he's not completely aware of what is going on.After I made the decisions, my sister decided to let me know that I went against his wishes and I wasn't honoring what he wants. I am very clear on what his directives are, they are in writing. She stirred up enough dust to make my Mom second guess my decisions. Now I'm torn and afraid I'm making the wrong decisions. If you've been through this, can you just give me some advice on how to honor the wishes and work w/ family, at the same time. I feel like I can't do anything right.

[Fabio]

Keeping everyone happy is almost impossible to do; as a matter of fact, I have learned through the years that I just can't do it.  So I have come to the conclusion that I will listen to what everyone else has to say, try to understand their position and validate their feelings, but in the end, I am going to do what I feel is best/right/appropriate.  It is what it is.   In your case, you are completely aware of your father's wishes, and you have been designated to be his Power of Attorney.  Right now you are acting on behalf of your father.  It's all about him, not you, your mom, sister, or anyone else.  Ammonia levels can wreak havoc on the brain; does your sister know this?  Does she realize that the medications will help him return to the father that you all know?  Maybe she just doesn't understand(I don't know, I'm just guessing,) and all that needs to be done is for someone to sit down and explain things to her.  Is she scared?  Confused?  Frustrated?  Sometimes our emotional brain takes over our thinking brain and she is just reacting and doesn't really mean what she is saying.  Maybe she hasn't had time to digest what is going on.  Maybe there's something more that no one has a clue about.    I've noticed that frequent family meetings help.  This ensures that everyone is on the same page, and knows what's going on.  It helps people voice their concerns, opinions, and thoughts, but I'd encourage everyone to do it in an effective way(include rules: no yelling, no name-calling, etc.)  I'd make sure there was an agenda, because lack of focus can lead to ranting and an emotionally charged disaster.  Always end the meeting on a positive note.   CAK, this happens all the time with families; I see it everyday, and I'm sorry this is happening to you.  You're a smart cookie, and I know that the decisions you make will be appropriate according to what your dad wants.  Don't doubt yourself. 

[Chionesu]

so he can make his decisions again.  It is not fair that your Mom agreed with you and then back pedaled.   If you make your decisions with your heart and knowledge you cannot go wrong.  Enlist the doctor?s help to be on your side. Do not beat yourself up for making a decision when your father is not in control of good judgement.   If this comes up again, have a "family conference" so everybody is on the same page.  I believe your sister?s reaction was not about your father and his wishes.  Probably she resented that you were able to make a decision without her help.  She wants to be included and she wants to feel needed.   Illnesses bring a lot of sensitivity to the family and friends.  We all have to "walk on eggs".   Communicate and be diplomatic is my suggestion.  

[Theros]

First, accept my deepest sympathy for you having to be in this position.   I HAD POWER OF ATTORNEY My step-father died in February.  He had two biologic childrens(two boys), both of whom lived far away, and me.  I live 2 miles away.  I had a durable power of attorney for him.  I'm sure he would have preferred one of his biologic children, but I was close by and he knew me to be very loving toward him; he trusted me.   THE TOUGH DAYS My step-dad's Parkinson's sometimes made him disoriented.  Moreover, both in the hospital and at home, he would "sundown." If you haven't seen this, it's what happens to the elderly when the sun goes down.  They become more scared, disoriented, and combative than they are in the daytime.  It's a horrid thing to experience.  During those times, he would refuse his meds, too.  Sometimes, even without sundowning, he would refuse his meds.  That made life unbearable.  And of course over time, he was making that slow roll toward death.   HIS WISHES VS. THE KIDS' WISHES His instructions, when he was lucid, were that he did not want to be rescusitated and he wanted "Hospice"  once he could do nothing more than sit or lie down.  About this, one brother was a wreck in the sense that he had no spine to ever make a decision.  The other brother, though I suppose he loved his dad, only called to tell me that all the decisions I was making were "against dad's wishes."  He would suggest that I was making dad's condition sound worse than it was, just so Dad wouldn't gobble up all my mom's money in caring for him.   One of the BIG issues I identified was that we had a very different perspective because of our proximity to him.  I was there every single(effing) day.  They were across the country.  Whenever dad was feeling good, he'd go home.  When he was home, his kids would visit and see him spry and talkative.  Naturally, they'd leave after a few days, and sooner or later, he would deteriorate.  If ever I mentioned stopping the meds and putting him in hospice, I'd get "well, he was perfectly fine when I was there.  It's impossible for him to have slipped so quickly. You're exaggerating his condition."    INFORMATION WAS THE FIRST STEP As his step-daughter, I had to tread lightly.  I was not the biologic kid and there was a presumption that perhaps my motives were not the same and theirs.  I created a blog on blogger.  It allowed me to give daily reports(you can actually send an email and it will be posted).  This allowed them to follow his progress more carefully.  They could comment, ask questions, and get a better idea of the way things were going.  Moreover, it kept the burden off of me for remembering all the little things -- I wrote them down as they happened.   I included lucid moments, too so that my siblings could see what his words were.    For instance, I posted this one day(I'm pasting from the blog here): Joe is doing well today.  Connie stopped by to finish reading "The Audacity of Hope" to him and that put him in good spirits.  He was even a little talkative, though hard to hear at times.  At one point, he asked me how long he had been out of it.  Three days, I told him.  "When can I go home," he asked.  I told him we still didn't know.  "If it's going to be this way, I'm done," he said.  Who can blame him.  We reminded him of the DNR, and we told him that once he started hospice he could have all the painkillers he wanted, but none of the meds that would keep him alive.  Also, we told him he could no longer take food through his feeding tube.  He was so excited.  It was bittersweet for mom, who is beginning to realize Joe's going to be gone soon.    That's an actual excerpt.  Anyway, it made his pain very real for them, and it brought to light the daily struggle.  I listed his meds for the day, and even what he was taking through his feed tube.  We talked about the times he fell of the toilet and the myriad times he soiled himself.  It was horrible, but it served a purpose. When his dementia got really bad and he started talking about how there were new meds around the corner that would allow him to read and eat and start writing again(he was a religious scholar), it was still rough.  My step-brother said, "Oh, he's changed his mind.  He's not crazy, he's just changed his mind."  We could point to the posts and the slow progression.  It made it easier.   Other than that, I have nothing to tell you except that I had to remember that people grieve in different ways and that my step-brothers lashing out at me was(a) not worse than what my step-dad must be going through; and(b) just their way of wanting to "do" something.  I tried to keep thick skin.   In the end, I had to "man up" and make the decision to put him in hospice.  He died 9 days later.   I think there was some initial anger on the part of my step-brother and my mom.  They said to me, "if we had known he was only going to last 9 days, we would have kept him alive longer!"  It's silly logic(in fact, that he lasted 9 days probably  means he should have been in hospice 6 months earlier), but it made them feel better to lash out.     Stay strong.  Be kind.  Do what you have to do.

[Jazmina]

The siblings are always the ones who have other view points. Your sister does not have power of attorney, correct? Did you mention anything to your siblings before you made a deceision about your father? If not, that may be an option for you the next time this comes up. Just because you ask for their opinion does not mean you are going to do what they say. You remember you have the power of attorney for a reason.   Remember your Mom is scared about her husband. When she is  upset it may be easier for her to second guess herself, let alone you.   Does your father have his wishes written down somewhere? How did you come up with your decesion?   I do not understand your father's doctor. Is your father's wish not to take his medicine? If not, ask his doctor to help you. I am sure that you don't want him to be withstrained to take his medicine.(They can and will do this)   I have no doubt that you are doing what you know to be right. Do not second guess yourself. You will drive yourself crazy. Do what you know is right. You may not be the most loved but you have to do what is best for your Dad.   Yes I have been through this a few years ago. I am sorry you are going through this. Your father has dimentia? Write me any time if you want to talk. Take care of yourself. Lucy

[Kaley]

Just Went Through This Exact Issue with My Step-Dad First, accept my deepest sympathy for you having to be in this position.   I HAD POWER OF ATTORNEY My step-father died in February.  He had two biologic childrens(two boys), both of whom lived far away, and me.  I live 2 miles away.  I had a durable power of attorney for him.  I'm sure he would have preferred one of his biologic children, but I was close by and he knew me to be very loving toward him; he trusted me.   THE TOUGH DAYS My step-dad's Parkinson's sometimes made him disoriented.  Moreover, both in the hospital and at home, he would "sundown." If you haven't seen this, it's what happens to the elderly when the sun goes down.  They become more scared, disoriented, and combative than they are in the daytime.  It's a horrid thing to experience.  During those times, he would refuse his meds, too.  Sometimes, even without sundowning, he would refuse his meds.  That made life unbearable.  And of course over time, he was making that slow roll toward death.   HIS WISHES VS. THE KIDS' WISHES His instructions, when he was lucid, were that he did not want to be rescusitated and he wanted "Hospice"  once he could do nothing more than sit or lie down.  About this, one brother was a wreck in the sense that he had no spine to ever make a decision.  The other brother, though I suppose he loved his dad, only called to tell me that all the decisions I was making were "against dad's wishes."  He would suggest that I was making dad's condition sound worse than it was, just so Dad wouldn't gobble up all my mom's money in caring for him.   One of the BIG issues I identified was that we had a very different perspective because of our proximity to him.  I was there every single(effing) day.  They were across the country.  Whenever dad was feeling good, he'd go home.  When he was home, his kids would visit and see him spry and talkative.  Naturally, they'd leave after a few days, and sooner or later, he would deteriorate.  If ever I mentioned stopping the meds and putting him in hospice, I'd get "well, he was perfectly fine when I was there.  It's impossible for him to have slipped so quickly. You're exaggerating his condition."    INFORMATION WAS THE FIRST STEP As his step-daughter, I had to tread lightly.  I was not the biologic kid and there was a presumption that perhaps my motives were not the same and theirs.  I created a blog on blogger.  It allowed me to give daily reports(you can actually send an email and it will be posted).  This allowed them to follow his progress more carefully.  They could comment, ask questions, and get a better idea of the way things were going.  Moreover, it kept the burden off of me for remembering all the little things -- I wrote them down as they happened.   I included lucid moments, too so that my siblings could see what his words were.    For instance, I posted this one day(I'm pasting from the blog here): Joe is doing well today.  Connie stopped by to finish reading "The Audacity of Hope" to him and that put him in good spirits.  He was even a little talkative, though hard to hear at times.  At one point, he asked me how long he had been out of it.  Three days, I told him.  "When can I go home," he asked.  I told him we still didn't know.  "If it's going to be this way, I'm done," he said.  Who can blame him.  We reminded him of the DNR, and we told him that once he started hospice he could have all the painkillers he wanted, but none of the meds that would keep him alive.  Also, we told him he could no longer take food through his feeding tube.  He was so excited.  It was bittersweet for mom, who is beginning to realize Joe's going to be gone soon.    That's an actual excerpt.  Anyway, it made his pain very real for them, and it brought to light the daily struggle.  I listed his meds for the day, and even what he was taking through his feed tube.  We talked about the times he fell of the toilet and the myriad times he soiled himself.  It was horrible, but it served a purpose. When his dementia got really bad and he started talking about how there were new meds around the corner that would allow him to read and eat and start writing again(he was a religious scholar), it was still rough.  My step-brother said, "Oh, he's changed his mind.  He's not crazy, he's just changed his mind."  We could point to the posts and the slow progression.  It made it easier.   Other than that, I have nothing to tell you except that I had to remember that people grieve in different ways and that my step-brothers lashing out at me was(a) not worse than what my step-dad must be going through; and(b) just their way of wanting to "do" something.  I tried to keep thick skin.   In the end, I had to "man up" and make the decision to put him in hospice.  He died 9 days later.   I think there was some initial anger on the part of my step-brother and my mom.  They said to me, "if we had known he was only going to last 9 days, we would have kept him alive longer!"  It's silly logic(in fact, that he lasted 9 days probably  means he should have been in hospice 6 months earlier), but it made them feel better to lash out.     Stay strong.  Be kind.  Do what you have to do. Sources: sadly, my personal experience. shredbettycrocker 63 months ago Please sign in to give a compliment. Please verify your account to give a compliment. Please sign in to send a message. Please verify your account to send a message.

[Kemp]

I am sure you are correct... The siblings are always the ones who have other view points. Your sister does not have power of attorney, correct? Did you mention anything to your siblings before you made a deceision about your father? If not, that may be an option for you the next time this comes up. Just because you ask for their opinion does not mean you are going to do what they say. You remember you have the power of attorney for a reason.   Remember your Mom is scared about her husband. When she is  upset it may be easier for her to second guess herself, let alone you.   Does your father have his wishes written down somewhere? How did you come up with your decesion?   I do not understand your father's doctor. Is your father's wish not to take his medicine? If not, ask his doctor to help you. I am sure that you don't want him to be withstrained to take his medicine.(They can and will do this)   I have no doubt that you are doing what you know to be right. Do not second guess yourself. You will drive yourself crazy. Do what you know is right. You may not be the most loved but you have to do what is best for your Dad.   Yes I have been through this a few years ago. I am sorry you are going through this. Your father has dimentia? Write me any time if you want to talk. Take care of yourself. Lucy Sources: personal experience   baitlady1398's Recommendations Taking Care of Our Parents / TIME Cover: August 30, 1999, Art Poster by TIME Magazine Amazon List Price: $19.95 This may help answer some questions. baitlady1398 63 months ago Please sign in to give a compliment. Please verify your account to give a compliment. Please sign in to send a message. Please verify your account to send a message.

[Loran]

Boy, this must be tough for you. Keeping everyone happy is almost impossible to do; as a matter of fact, I have learned through the years that I just can't do it.  So I have come to the conclusion that I will listen to what everyone else has to say, try to understand their position and validate their feelings, but in the end, I am going to do what I feel is best/right/appropriate.  It is what it is.   In your case, you are completely aware of your father's wishes, and you have been designated to be his Power of Attorney.  Right now you are acting on behalf of your father.  It's all about him, not you, your mom, sister, or anyone else.  Ammonia levels can wreak havoc on the brain; does your sister know this?  Does she realize that the medications will help him return to the father that you all know?  Maybe she just doesn't understand(I don't know, I'm just guessing,) and all that needs to be done is for someone to sit down and explain things to her.  Is she scared?  Confused?  Frustrated?  Sometimes our emotional brain takes over our thinking brain and she is just reacting and doesn't really mean what she is saying.  Maybe she hasn't had time to digest what is going on.  Maybe there's something more that no one has a clue about.    I've noticed that frequent family meetings help.  This ensures that everyone is on the same page, and knows what's going on.  It helps people voice their concerns, opinions, and thoughts, but I'd encourage everyone to do it in an effective way(include rules: no yelling, no name-calling, etc.)  I'd make sure there was an agenda, because lack of focus can lead to ranting and an emotionally charged disaster.  Always end the meeting on a positive note.   CAK, this happens all the time with families; I see it everyday, and I'm sorry this is happening to you.  You're a smart cookie, and I know that the decisions you make will be appropriate according to what your dad wants.  Don't doubt yourself.  confuzzled 63 months ago Please sign in to give a compliment. Please verify your account to give a compliment. Please sign in to send a message. Please verify your account to send a message.

[Nilay]

Just before - two weeks before, I called down to talk to him and he could barely talk to me - I couldn't get anything out of Clara, my Step Mom(he married her after my Mom Died - they were both like 70 when they married). I asked if she was going to call for an ambulence and was getting no answers, nothing.   So I got in the truck, drove 15 hours straight, took him to the hospital, because it was clear to me that he was dying and then had to come home for my kids graduation. I had to teach the next week in Dallas, but it got canceled last minute and good thing, because Clara couldn't make a decision. The big one: should he go on Dialysis. I agonized because I knew he didn't want the wires, but I said yes.   Didn't matter. He died a couple days later and I went down to take care of the details and bring   Clara to the funeral. She wouldn't go. and somewhere in there, I became an ass.   I must have killed him because now, when I call her, I am told to "go to hell"   so, there you go. Not exactly a positive answer, but it's the one I have.

[treadway86]

Get Dad's ammonia level back on track..... so he can make his decisions again.  It is not fair that your Mom agreed with you and then back pedaled.   If you make your decisions with your heart and knowledge you cannot go wrong.  Enlist the doctor?s help to be on your side. Do not beat yourself up for making a decision when your father is not in control of good judgement.   If this comes up again, have a "family conference" so everybody is on the same page.  I believe your sister?s reaction was not about your father and his wishes.  Probably she resented that you were able to make a decision without her help.  She wants to be included and she wants to feel needed.   Illnesses bring a lot of sensitivity to the family and friends.  We all have to "walk on eggs".   Communicate and be diplomatic is my suggestion.   Violet1 63 months ago Please sign in to give a compliment. Please verify your account to give a compliment. Please sign in to send a message. Please verify your account to send a message.