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I have been MPOA and dealing with medical issues with my parents for several years. Along with the hoops you jump through, I have also been having frank discussions with them about end of life care and what they want. One of my parents is now in Stage 4 kidney failure with uncontrolled diabetes. They made it perfectly clear many years ago that they did not want insulin or dialysis and I have honored that request. But these choices have consequences. At this point, they are eating very little, dropping a lot of weight and suffering with dementia. They are on hospice, but as soon as the "H" word was uttered, family members are wanting said parent to see a doctor. At this point, I feel it is useless because 1. It's not going to fix anything and 2. It's not what this person wanted. It's my call, as I am MPOA, but I would really like to understand the family members' reasoning. Am I being unreasonable here?

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I feel like you are doing the right thing by following the care they want.

To me, it wouldn't matter what the family thinks, but I understand your concern.

You're absolutely not being unreasonable.
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MaryKathleen Sep 2020
I agree, perhaps these "family members" don't understand that you have to have a physican's diagnosis to go into Hospice. Perhaps, they think you just willy-nilly decided on hospice. They have no say in this. Your parents chose you to be their representative for a good reason. ((HUGS))
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I’ve just walked with a parent through the final weeks. An unexpected bonus during this, NOT, was the frequent unwanted and unhelpful opinions of various relatives. My understanding of their reasoning is the denial that death is a very real part of life and will one day visit us all. There are some who need to “fix” things, even the unfixable, they don’t want to see themselves in the position your parent is in, so they push for it to be different. Please tune out these voices and know you’ve honored the hard choices your parent made. Your parent is blessed to have you and I wish you peace
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Frazzledteacher, please make it very clear that you are only following your parents wishes, not imposing your will on them.

Like this is not hard enough already. Great big warm hug!
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As their MPOA you have the responsibility and the authority to make medical decisions for them. They've made their end of life decisions clear to you verbally, but having documented advance directives would have been helpful to actually show the family your parents desires. Seeing a dr. would be pointless because they've been referred to hospice by a dr. already and have met the criteria for hospice care. As stated below, "your following your parents wishes, not imposing your will".

Incidently, those living with dementia don't "suffer" as much as the caregiver does. Stick to your guns and continue to honor their end of life requests.
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You have listened to your parents’ wishes and you are doing exactly what they asked you to do. You are doing the right thing. Don’t let others “guilt” you.
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Some relatives have more of a mindset that all things must be done to prolong life, no matter how desperate or how futile.
The family members who want parents to see a doctor and continue medical intervention are scared and desperate and want the doctor to "fix" your parents
Not everything can or should be "fixed.".. They are not accepting the reality of the situation.
Honor your parents' wishes and let your parents decline gently on their own schedules.
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Frazzled,
I am also on the hospice journey with my mom.

Like your parents, she was very clear about her wishes. And hospice was her choice. There comes a point in chronic illnesses (my mom has CHF) that more treatment will achieve nothing other than a whole lot of doctors visits.

I have 2 children, both still living at home. My son is 24, he is a biomedical engineer whose ultimate goal is pharmaceutical research; my daughter is almost 20 and is currently in a program to pursue her doctorate in physical therapy.
So both are somewhat on the periphery of healing.

When I told my kids that grandma had signed a DNR, they both balked. They had both been lifeguards for the majority of their teenage years. I said "If you're ever alone with grandma, and she stops breathing, she doesn't want CPR". They were both horrified. In their late-teen/early 20 year old minds, this was tantamount to suicide.

So I sat them down and had a heart to heart talk with them. Told them I understood their position. Told them I would have felt the same way at their age. But as you get older, your views change. I asked them "if you were in Grandma's position - living with this chronic condition that will NEVER get any better, that the best you could hope for in a day is to have the strength and breath to be able to just get up and go to the bathroom; if your heart mercifully stopped with no pain, would you really want someone bringing you back to face that same quality of life?"

It was an absolutely heart-breaking conversation to have to have. I'm tearing up now even telling the story. But I was able to get them to understand it from grandma's point of view. So now, while they're sad at the prospect of her passing, they can understand and even forgive her for her choice to not seek further life-extending treatment.

If you feel the need to explain your parents' choices - and your feeling of obligation to follow those choices - put it to your loved ones like I did to my kids. When family members don't see the daily decline right in front of their noses, day in and day out, it's easy for them to be in the mindset that life is worth living at any cost. For those of us on the front lines, we come to realize there's a world of difference between living and existing. Once life has stopped and mere existing has begun, hospice is a blessing.

I send you my love, support and prayers. (((hugs)))
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frazzledteacher Sep 2020
I completely agree! The hospice folks have been very informative and helpful. I wish you and your mother peace on this journey.
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Frazzled, you've received excellent answers from each person.   I especially agree with RedVanAnnie's second observation.   But I think guilt is also a factor, especially if the relatives haven't been involved.

In my experience, it's generally (a) guilt for not having been supportive or involved (b) assumption that even though someone wasn't involved, that someone has worthwhile suggestions about end of life care, and/or (c) religious issues.

You're not unreasonable; I would even be bold and ask the family members specifically what they want to know from a doctor, and how would they plan to address it since you're assuming they now want to become involved.
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frazzledteacher Sep 2020
Guilt might be part of it, but I think denial is most likely. I had to be the bad guy when it was time to take the car keys too because they refused to see the necessity. To be fair the most vocal person in this HAS done a lot, but lives far away and you can’t see the whole picture when this is the case.
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Family members need to be informed that your parents choice for their lives was not to have dialysis. I am a retired RN. That has for two decades and more been my own decisions. Unscrupulous doctors may tell you this is a bad death. On the contrary, and esp. with hospice, it is not.
Yes, it is definitely your call and you must stand strong. You are going to be accused if they are uneducated of wanting your parent to die.
You should now enlist Hospice Social Worker. They all have one. Discuss your parents wishes and your determinations and plans FIRST. Then gather all family that wishes to attend and explain with hospice present your parents wishes, your determination to carry forth.
Dialysis is gruesome and grueling. I wouldn't wish it on my worst enemy. I won't be going there. But that is me and my decision and my beliefs. The important thing here is that your parents made the decision not to prolong life at an awful cost to them mentally, emotionally, dignity, painwise. And you are honoring it for them. And I think that, in all this grief, is wonderful.
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Doug4321 Sep 2020
Renal failure is what was put on my mother's death certificate by the nursing home doctor. I visited her 2x a week and never once saw that she was suffering. She died peacefully in bed while waiting for her morning breakfast.
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Trust yourself and know you are fulfilling your parents' wishes. You had the discussions with them, you know you are doing the right thing. Keep it up!
Are the relatives nearby? Have they witnessed your parents decline? If not, invite them for a visit so they can see for themselves.
The idea of Hospice can be scary. It cements the fact that there is nothing to fix. Those that haven't been right in the circumstances may be shocked that parents have reached that point already. You have day to day involvement and know the reality and can accept it is time for Hospice. Be gentle with the relatives, but stick to your guns too!
As MPOA it is your call. As a child who had frank discussions to discover their wishes, you are doing the right thing. Hospice has social workers that can help you with dealing with relatives. Take advantage of their services.
Best of luck to you.
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frazzledteacher Sep 2020
I had the hospice social worker call the most vocal relatives, but it didn’t help. I appreciate everyone’s support. I’m just going to put my foot down.
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Does your Medical POAs not say what Mom and Dad want. My Moms read like a Living Will. If it says they want no insulin or dialysis then your responsibility is to carry out their wishes. I doubt at this point you could reverse the damage they have done. Realize that both high sugar levels and the toxins in the blood stream will cause Dementia like symptoms. If the ones kidneys have failed it won't be long for him/her. Both my friends were gone within 2 weeks after stopping dialysis.

Please, no guilt. This is what your parents wanted and you honored those wishes.
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frazzledteacher Sep 2020
No, the mpoa just gives me decision making ability but does not spell out their wishes. In hindsight, I wish I had gotten a living will, but I did not foresee the family complications.
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The family members see medical conditions that have "fixes," but do not understand the conversations you already had with parents about treatment for those conditions. Might try saying, "When mom and dad had clearer thinking we talked about these options and they said they wanted _____ and not ______. I am honoring their wishes (and that is why I currently have the MPOA)."
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Stick to your parents wishes. My Mom is in declining mental health, every time the dr wants to send her to the hospital for treatment we say no, why put her through that, especially now? At 93 she has had a long life and has always had a horror of being on artificial life support, unknowing but kept alive just because it’s medically possible.
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KaleyBug Sep 2020
If your not following the doctors recommendation have you considered Hospice at home for your mom? This will keep you from being held responsible if/when your mom passes. My mom continued under Hospice all her normal meds and died of natural causes after 7 months.
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You're the MPoA and you know their wishes. Screw everyone else's opinion.
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Takincare Sep 2020
Short, sweet and to the point!!
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No you are not being unreasonable. The people you honor are the people you have MPOA for, your parents. It is their wish not your family members. More likely why your parents chose YOU to be their MPOA because they knew you will honor what they chose to be done for them. Before my Mom passed she prepared all documents necessary for me to control her estate, not anyone else, because she knew I would do exactly what she wanted. But sadly, family who never gave a hoot comes out of the woodwork all of a sudden wanting to give their two cents in matters that have nothing to do with them. All due to them thinking they can acquire money from my mother's estate. This matter is between you and your parents. That is all you need to concern yourself with. It's hard enough dealing with your parents health conditions without family interfering. Hope this helps you.
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Can you have an appointment with the doctor, medical psychiatrist or psychologist, or hospice nurse without the ill family member having to be dragged into the office? Perhaps having the doctor explain what is happening and the myriad of choices different people make will help the family back off a bit.

Keep doing what you are doing - you are honoring the wishes of people who can no longer speak for themselves, and that is a very important role in their lives. Carting them off to the doctor just to satisfy a family member makes no sense!

I am sorry that family members are not on board with what is happening, but keep in mind that YOU were chosen to make decisions for a reason, not them!

My family was not happy with the decisions that were made for my granny - that is just their problem, I did exactly what she wanted done and had expressed many times! It had to be enough for me, even though I did not always agree with what I was doing. Not my choice, it was hers - my only job was to do the best I could to carry out her wishes. The doctor found himself explaining that more than once, and it did help clear the road so her wishes could be carried out
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Takincare Sep 2020
Sometimes it rips your heart to pieces to carry out what they wanted because we're not ready to say goodbye. She was lucky to have you with her.
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I started a comment but lost it somewhere along the way.
Rather than try to recompose it, I agree with the majority here - you are NOT being unreasonable.

Your parents chose you to make their decisions for them AND they made their decisions known to you. I do wish attys who set up these POAs would add a little more specific details, esp for cases like yours, so that we could avoid conflicts like this - at the least you would have something you could show them. Might not stop them, but if it did, yay! I know that when mom and dad were setting all these documents up, there were MULTIPLE pages listing certain conditions/scenarios and choices for what they would prefer to have done. I do know that neither wanted "extraordinary" measures, but none of this was included in the package, not even after we had to do some over after dad passed and mom developed dementia.

I think, like someone else said, perhaps your family members see conditions that are "treatable" and maybe feel you should be doing more, but again, this is what your parents wanted, so it is what you should continue to do.

"I’m sympathetic to their feelings, but I simply cannot take large amounts of time justifying my decisions."

Nor should you have to spend any more time dealing with this - once and done. Perhaps you could send a letter, certified so that you know they received it.

Give your sympathies to their pleas.
Give your understanding for what they think should be done.
State unequivocally what your parents said they wanted and didn't want.

Follow that with stating that as MPOA, a LEGAL document, you are bound as their agent to grant their wishes as best you can.

End of story. I wouldn't address the situation again. If they call or stop in and try to bring it up, refer them back to the letter you sent. If they were to continue harassing me by phone, I would not answer their calls. They will likely leave a message, but you can listen to it or not, just delete it, no response to it at all.
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It is very hard, but you are doing the right thing, honoring their wishes.
I would not take any calls or unsolicited advice from family members.
They've been extended the courtesy of knowing they should probably come visit soon.

Amazing how people LOSE THEIR MINDS when they hear "Hospice."

I second the comments about dialysis being NO LIFE. Had a family member who was on it for almost 2 years. Every treatment left him feeling exhausted and barely alive.
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You are not being unreasonable. Sometimes family members try grasping at straws. You are following your parents' requests and life choices. It is a hard thing to do sometimes but you are carrying out the choices they would've made for themselves, they chose you because they trust you to speak on their behalf when they're not able to and knew you are strong enough to see it thru. Similar situation pertaining to my late MIL life choices, she did not want feeding tube or ventilator, after a major stroke feeding tube was an option offered to us by hospice (they have to tell you about it) husband's reply was no, we are honoring her last wishes to which her nurse said thank God. His sister, who lived out of state and did not have MPOA attempted to get them to give her a feeding tube behind our backs, needless to say it didn't happen. Keep them comfortable, love them, hold their hands, talk to them. If meddling family attempts to interfere and question you, demanding doctor visits, just inform them that you are carrying out your parents' wishes. Continue to be strong for them. I am sorry you are going thru this at this time. You and your parents are in my prayers, this is not an easy road to travel.
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Hospice will be able to explain it more to them if they will sit and listen
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The last time my sister's and Mom were physically together in one room I asked my Mom a few basic questions along the line of 'if _________ happened to you, what would you want us to do?'. Each time she answered 'nothing'. My one sister argued with her but Mom was adamant. She is 91. She hates life under covid at her AL. So all my sister's got to hear it from Mom. Hoping when the time comes they'll remember.
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It sounds like you are following their guidelines. I could say don’t feel guilty. Ignore those that harass you. Luckily for me my family and dad (although dad was hesitant at first) supported the decision to put mom on hospice. Dad over the months (7) realized no one was killing mom only keeping her comfortable with visits. Mom never needed morphine nor did the Hospice nurse recommend it since mom was so comfortable whenever she was asked, mom would shake her head yes. I have to admit once mom passed for several weeks I questioned my decisions. I knew I took good care of mom and listened to cues on when she had eaten or if she drank enough. I still had moments of could I have done more or something different. Sending prayers to give you strength and a peaceful journey as your parents begin their transition.
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It is easy for people to say "stop all care: No feeding tubes, no this, no that, just let me go" when death is not at one's door--- but when it is actually happening perceptions can change. Even more so, the person may not actually be able to communicate it. So even advanced directives are not written in stone. Death by dehydration is far from peaceful, but quite brutal as it can take like two or three weeks to slowly die of that, and narcotics do not always make it "easier". Dehydration death is barbaric. I don't understand why society lets people die that way, but keeps euthanasia illegal. When our pets are obviously dying they are treated better and vets allowed to euthanize. Not people.

Whatever you decide you have to live with your decision. If you have siblings, let them be part of that decision.
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Musicismymuse Sep 2020
That is not true. VSED is NOT painful, only painful for the observer to watch. Both of my parents, who did not take any medication, were in and out of consciousness the last few days and went peacefully and comfortably. It is a lie that dehydration is barbaric. It is the 'narcotics' that cause the problems.
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If you have been closest to your parents, you have seen their decline. Some family members may not have seen the decline and think of parents as they last remembered them. It must be difficult to see a parent in kidney failure and it also seems as though that parent knows what he/she wants. My mother has advanced dementia which, I admit, I didn't realize until she moved closer to me. Now, she's ready to go when the time comes, and I have come to accept that better over the last few years. And yes, you are being very reasonable.
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Just uninformed. I just got my Moms family FPOA to take her to Dr. Amen's clinics. They specialize in brain analysis and treatment through ongoing scans and combine with nutrition and supplements. Has clinics all over US. Look up on You Tube or Public Television. These nursing homes and many medical pros only use commercial treatments and medications. Dr. Amen recently invited to White House to introduce his plan to combat mental health treatment in families.
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Beachgirl54 Sep 2020
If your family member has dementia or Alzheimer’s, don’t waste your time or money (which most insurances do not cover at Amen clinic). I took my hubby there 3 years ago, spent 3 days there and lots of money. They diagnosed as TBI, we bought their recommend supplements and followed their recommended diet for almost 2 years. My hubby's memory continued to decline - last year he was diagnosed by neurologist that specializes in memory issues with Lewy Body Dementia. He can no longer drive, or any of the things he was doing 3 years ago. Had we known then it was dementia and put on appropriate meds, he might not have declined so rapidly to where he is today. They might can help some people but not dementia or Alzheimer’s!! This is my opinion from our personal & expensive experience.
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I'm a going through the same thing with my parents and I am also their MPOA (I am an only child).
It's a lot of responsibility. My parent's Healthcare Directive and the MPOA is very concise - it states that I am to follow their wishes and that no matter what their physical or mental status is "down the road" that these documents are legal and that they want their wishes to be followed. So, as hard as it is, or will be, that is what I will do.
You sound like you are doing that. Other people's wants and desires for them, without sounding harsh, don't really matter. Of course, they are thinking with their hearts, but you are simply carry out your parents wishes, which I am sure is hard and heartwrenching enough for you without outside people being an issue instead of being supportive you you all.
We can't force our parents to make better choices, we can't make them do anything if their minds are in tact and they are able to make their own decisions. I'm sure you are doing the best you can and you are absolutely right - it is YOUR call as legal MPOA. Don't worry about what others reasons are, you just focus on doing what you need to do for your parents. They trusted you to do right by them and that is all that is important right now. Everything and everyone else can take a back burner. Good luck to you during this hard journey.
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As MPOA, your responsibility is to thoroughly understand your parent's wishes, and follow those directives (legally and morally). You should call a meeting (or meet in person with) those family members, and show them the MPOA and the specific language that is included. It will help them understand your responsibilities. After all, you have the MPOA, and it is you that will make any final decisions.

I had many frank discussions with my husband on his wishes and I knew the exact moment when I needed to make that difficult decision. Hospice and palliative care can help the patient be comfortable, mitigate their pain and make daily living more tolerable. When there is no further medical treatment that can be given, keeping them comfortable in their last days is most important.
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If the family wants you to take her to a docor then DO IT! The doctor will recommend hospice and then you have peace in the family. Problem solved! Try to be a peacemaker instead of "Its my way or the highway i have POA". Yu keep barking about what your mom wanted well wouldnt your mom want you to try to at least try to keep peace in the family if posssible?
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CindyMP Sep 2020
When a person is that ill, the last thing they or you want to do is load them into a car and travel to the doctors. It is exhausting, invasive and not helpful. It would have to be a medical emergency before the 87 year old gentleman I care for was dragged out of his comfortable and peaceful surroundings to visit a doctor that could do nothing to benefit him.
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You are doing the right thing and honoring their wishes. Nothing like those who aren’t around to pipe up is there. They obviously don’t understand what their health conditions are and how there isn’t much that can be done. Everyone has the right to die how they wish. If your parents qualified for hospice, that is telling. If they could be made well, hospice wouldn’t be involved. Do they understand what hospice does? Perhaps they need to talk to the social worker.
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frazzledteacher Sep 2020
They have spoken with the social worker. No dice.
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You're not being unreasonable as regards the family members: you have devoted many years' care and thought to this issue, and it must be beyond irritating to be second-guessed by people who haven't. As far as that goes I completely sympathise.

But I am concerned because it isn't clear to me what medical involvement there has been, or how recently. Decisions made "many years ago" may well need to be reviewed, and your role as MPOA is to take your parents' part in those reviews as though you were them, but still to take new information and new circumstances into account, and to seek the advice of qualified practitioners. My fear is that ploughing on regardless could look dangerously like negligence.

What kind of assessment was done when they were admitted to hospice?

Depending on what sort of doctor and what sort of investigations and with what purpose in mind the relatives are proposing, I think you should consider allowing an appropriate consultation. There are palliative care specialists, and such doctors would be in complete agreement with the principle of respecting your parents' long-expressed wishes.

Just asking: refusing insulin - which is not usually seen as onerous or invasive - does not sound well thought-through. What was your parent's reasoning on this particular point?
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