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?
HAVING said THAT, it would not do harm if a physician or nurse evaluated the situation. Hospice might help with that. Perhaps there are additional comfort measures that can be taken. My mother is on hospice and they have brought drugs to relive pain should they be needed. No matter, the relatives will feel they have done their duty.
Hospice is a little different now but sounds like it's the right thing at this time. It's not like anyone can be put on Hospice without a Dr approval anyway.
I would just let the others know that this is what they want, not extend their life an extra few months being kept alive and being in Hospitals, ect.
It's much better if you are allowed to die in your own home as peacefully as possible.
If it would make family members feel better, you might arrange a meeting with her Dr to have them explain to them that this is the best option and is what they wanted.
There was a time I put my mother on Hospice too soon. I had a devil of a time getting her off it (although I'd been told it wouldn't be a problem). The 2nd time I put her on Hospice was the appropriate time.
What I had really wanted the 1st time was Palliative Care but it wasn't available in our area. Many people equate Palliative Care & Hospice as being one & the same but in it isn't or shouldn't be,
You are just as I was in an unenviable position, No matter what you do, there will be those who vehemently disagree with whatever you do,
I write from the patients point of view. I was diagnosed a little more than four years ago with early onset ALZ. I watched both my maternal uncle, who was a Priest, and my Stepfather both die from ALZ. I know how ugly death from this disease is and I don't want that to happen to me.
I've been very vocal throughout my adult life that I do not wish for extraordinary measures taken to keep me alive under any circumstances. Now that I have this diagnosis, I first brought the subject up again with my DW, spoke to my children about my wishes were and then outlined my wishes for no ventilators, no CPR, no extraordinary measures to keep me alive, no exceptions. I also put it in writing legally with instruction in my Medical Directive and have named my DW and one of our adult children if my DW is unable to serve as my Medical POA what my wishes are. I've shared with my children that I have taken this action. My family has all agreed to honor my last wishes. I have also provided all of my doctors with my Medical Directive.
As far as understanding the family members reasoning...Many people are afraid of death. It's really easy to be a back seat driver with someone else's business. You didn't mention the age of your parents, but let's say for sake of argument that they are 85 with end stage kidney failure and uncontrollable diabetes...hospice would be the kind thing to do.
I would act on what your parents wanted and let family members know when they can call or visit. If they get a little snarky, tell them to make sure their children know their end of life wishes, just like your parents have done...and leave it at that.
Go with what your PARENTS want here and not your 'concerned family members' who have no power to do anything but inflict guilt and second-guessing on you. Tell them to please stay away until and unless they have something useful and/or positive to contribute to the end of life care for your parents. Otherwise, you have ENOUGH stress in your life right now, thank you, without them adding to it for no good reason.
You are doing the right thing. God bless you and give you strength during this difficult time. Your beloved parents will be out of pain soon and whole once again.
The right to die the way you want, and with dignity.
We don't get to choose how we're born, nor to whom. Why not allow people who took the time to write or express their preferences to live them out at the end? It sounds like you are honoring them. What a kind person you are! How much more humanitarian is that than forcing our selfish preferences by making people's tired bodies continue as long as possible, no matter the circumstances? My advance directive insists that my daughter unplug me, if it comes to that. I think you are doing an honorable, if excruciatingly difficult, thing. Peace be with you.
I am not an expert on hospice but my dad was one it for one month prior to his passing. I was under the impression that there is a board with a doctor or doctors overseeing hospice as well as a team registered nurses.
I do NOT see a need for another doctors review.
It is so much easier when one person is in charge abeit wonderful if the group consensus agrees or at least allows one person to make final decisions so everything is not constantly being changed. Its hard enough for you to provide this care. Make your best decision and let it be. Its easy to play whatnifs all the way through but dont do that. Rely on the expertise of hospice and lean on their guidance and trust yourself afterall you are the designated caregiver. With moms health challenges shes in the right care. Im sure of it.
This is an extremely difficult time and you are handling it as well as you can under the circumstances. You have absolutely no reason to feel any guilt. As far as questioning yourself, that only shows that you care deeply about your family.
Take care. Don’t forget about yourself which is easy to do in this situation. Often caregivers lose themselves when caring for others. You don’t strike me as that way. You seem to have your priorities in order. The stress of dealing with this is enough to make anyone question their actions but it seems clear to me that you are doing all that you can possibly do.
I just watched a very startling lecture today with a panel of 5 scientists and doctors . One which was the Queens dr for 30 years if I’m not mistaken. The alarming data presented by these brave doctors will make anyone mistrust any directive given by any health expert.
conclusion of the video was that profit drives the narrative of any medical protocol. Not healing and not preventing health decline. That’s as far as I’ll go. I’m sold. The presenters were legitimate medical professionals putting themselves out there with their carefully collected unbiased data showing horrible astonishing failures of medical based health systems. I’m still appalled by the information and the corruption that was exposed .
You are not being unreasonable. Do not start to doubt yourself.
Also, you are not responsible for family members discomfort with your parent's plan for end of life choices.
I feel that the relatives are attempting to ameliorate any guilt or grieving as well as doing the basics of inquiry into an elder's welfare. You are obligated to keep your parent's medical choices private. You can, if you want, reassure them that there is no torture or euthanasia planned in your parent's end of life choices. But you cannot share any details of their treatment with people who ask.
And gently tell the relatives so. Then, add that you and the medical treatment team have got this handled. (Sound confident).
Repeat as necessary, and if any family member gets intrusive, refer them to your parent's attorney at their own expense.
You can refer them to the work and lectures of Atul Gawande.
Hope this is helpful to you. The road may be difficult, it could be long or short. Sorry for your impending loss. You have us to come alongside to talk to. Caregivers who have gone through similar.
My own Mom should be in hospice, being made comfortable, instead my sister with MPOA relentlessly pursues medical treatments, even physical therapy. Physical therapy? Mom can't even stand up anymore. She can barely hold a cup. It is heartbreaking to stand by and witness the emotional and physical suffering she endures every day. Sis did the same thing with Dad before he passed. It was horrible.
One especially hard part has been the false hopes given to my parents that they were going to "get better". The night before Dad died he insisted the doctors needed to get the disease out of him. Sis fostered those false hopes. Dad was 90 years old with multiple systems failure, yet hospice was never an option for Sis. I was never clear about what Dad wanted, I think he embraced denial but Mom is different. She is terrified and in pain and her body and brain are rapidly deteriorating, she constantly cries out for help. I have tried to advocate for hospice but Sis will not consider it, she says Mom is not ready. IMO, it is Sis who is not ready
I love what Senior Struggles said "How much more humanitarian is that than forcing our selfish preferences by making people's tired bodies continue as long as possible, no matter the circumstances?"
She is obivously in pain. Give her Tylenol every day. It will help her relax. They do this in New Zealand. This gal was from NZ. It was nice of her to suggest this. So, everyday, she gets aTylenol.
Tell sis Hospice is NOT a DEATH SENTENCE. She may want to ask for Palliative Care. They come in once a week at least to evaluate. They will assess her needs and request for other treatments if deemed necessary, like physical therapy.
I have a similar problem with my husbands grown children in their late 50 s who see or call their dad 3x a year. They want to critique our decisions and suggest I’m not being careful with their dad during covid. Negativity! How would they know????? They are never around!! His daughter is suppose to be visiting on Saturday, I can’t wait🙄
see a lawyer.
YOUR LOVED ONES, want HOSPICE, DNR IN PLACE? DNR.. POLST. etc.
And if so, give your family members who are fighting this, a COPY....
I have my LO's DNR, POLST TAPED UP ON THE WALL OVER HER BED....
ANYONE WHO WANTS TO ARGUE, OR COMPLAIN,,, GO TO THER PERSON WHO HAS REQUESTED THIS... IT IS ON THE WALL...
I have it posted on the WALL above her bed, because one day, one facility member could not find it when 911 was called. Off to the hospital... Oh geez,, I was not in town. I went out for that ONE weekend. Just one weekend, and all this happened. I never go away farther than 2 hours... Nope, that weekend I was 8 hours.
I do suggest any DNR or POLST, make a photo copy, frame it or not, make it not look too medical, and nail it on the wall over their bed or near them. After awhile, they don't even know it's there, especially if it is a bit faint in color. MIne is taped, black n white, original is in the books, but it is one the wall for ER PERSONELL. Nobody has to ask if patient has one, it is on the WALL. Usually ALZ/dementia, may not realize what it is...Then again, I have all my contact info on the wall so anybody,,, can call me. They know who I am,
To this comment, if the "Family" is all so concerned, they should take a road trip and physically see for themselves what is going on. Most facilities have a "sign in " sheet.
Now with COVID, that may be hard. In my facility, put on a mask, and take the precautions, sign the waiver, wear gloves, do not get too close, you can actually see your loved one and see for yourself, how that person is doing.
send a copy of the DNR AND POLST TO ALL FAMILY MEMBERS who are arguing... And then ask them what the issue is...
as my FIL would tell me, I do miss him: THESE BODIES ARE NOT MADE TO LAST FOREVER.
This is sad. I am sorry you are going through this. I hope these family members have their stuff in order.... :( I certainly do not want to go on an intubator.
COVID patient on a vent for 6 weeks saw a copy of the insurance bill $1.1 million dollars for 6 weeks on a vent. think he was required to pay $36K. Still a hint to get your DNR in place. I do not want to be on a ventilator for that long, let alone the monetary cost.
Yes, your call. You are also not required to share detailed information (actually with HIPPA laws, you really shouldn't share details.) Certainly a high level how they are doing would be okay, so long as the others are not throwing a fit. When they do, stop feeding them info. It isn't part of being MPOA, it is part of being a caring family member. Already said it, but find a good definition of MPOA, send that in a letter with high level description of your discussions about what they wanted and didn't want, and no further discussion.
I did see a new post today about DPOA. I may address that in that thread, but since I am here... A DPOA has a duty to perform, similar to MPOA. ANY charges incurred by your parents, medical or otherwise, it is that person's DUTY to cover the expenses. Objections to treatment are irrelevant. Parent(s) owe something, DPOA needs to pay for it. You shouldn't have the bills sent to you, as then the creditor might consider you the responsible party. In that letter to the other family members, perhaps a good definition of DPOA and their duties should be included in that siblings mailing, but only if the DPOA is balking or refusing to pay. Failure to pay your parents' bills is a failure of this sibling to HONOR the duties to which they were entrusted.
Your family members are not wanting to give-up. If they aren't present every day, their questions and requests might sound unreasonable, but are common for those outside the medical field.
This is why having an advanced directive is so important—letting the ambulance crew, hospital and relatives know what your wishes are. On the advice from someone whose mother collapsed at home by herself I have a copy on my refrigerator.
I’m POA for my brother who has glioblastoma—a very aggressive brain tumor. Oncologists said he needed to follow up the surgery with radiation and chemotherapy, which would have been just a pill. The best time for treatment is around six weeks after surgery. But his agitation, which made him very uncooperative for a while, an infection and then Covid put him way outside that optimal time. Additionally sometimes he refused pills and shots to prevent blood clots. I saw no point in pursuing treatment that might extend his life by a couple of months but make him miserable. It was my call to place him in hospice. Interestingly, studies have shown that the earlier patients are placed in hospice the greater the likelihood they’ll live longer, be more comfortable and able to spend quality time with loved ones instead of sleeping all the time or dealing with pain or nausea. Not that many people understand that.
He’s not cognitively capable of making this decision which is a challenge. I had to think of what would he have told me a year ago if he saw himself the way he is now. He would have said “No way!” His 22 year old daughter was in agreement, which was heartbreaking since she’s daddy’s girl.
Two books really helped me. “Being Mortal” by Atul Gawande, a surgeon and professor with Harvard University, and “Farewell; Vital End-of-Life Questions With Candid Answers”, by Edward T. Creagan, who was a medical oncologist and professor at the Mayo Clinic. They both argue that while medical treatments have healed many people, there needs to be a look at what the cost is to the patient and family, not to mention the national debt. We have to come to terms with the end of life, and the folks who are insisting on further treatment haven’t done that yet.