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 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)))
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.
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.
To me, it wouldn't matter what the family thinks, but I understand your concern.
You're absolutely not being unreasonable.
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.
Like this is not hard enough already. Great big warm hug!
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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