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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?

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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Reply to Daughterof1930
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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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Reply to notgoodenough
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frazzledteacher Sep 4, 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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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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Reply to RedVanAnnie
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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 8, 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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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 9, 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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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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Reply to sjplegacy
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You're the MPoA and you know their wishes. Screw everyone else's opinion.
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Takincare Sep 7, 2020
Short, sweet and to the point!!
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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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Reply to Isthisrealyreal
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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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Reply to swanalaka
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frazzledteacher Sep 4, 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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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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