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?
To me, it wouldn't matter what the family thinks, but I understand your concern.
You're absolutely not being unreasonable.
Like this is not hard enough already. Great big warm hug!
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.
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.
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)))
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.
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.
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.
Please, no guilt. This is what your parents wanted and you honored those wishes.
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
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.
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.
Whatever you decide you have to live with your decision. If you have siblings, let them be part of that decision.
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.
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.
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?