I am my 82-year-old mother's durable healthcare POA. We've had the papers in place for years, but her doctor just activated it yesterday.
She submitted a letter in July to her medical file saying she no longer wanted any testing or medications. When asked about the letter yesterday, she claimed to have no memory of it. This set off the incompetence bells, and the durable healthcare POA was activated.
Mom lives in independent senior housing. She is diabetic. She has no interest in taking her oral medications. Her average daily blood sugar is 347.
I know her wishes. She just wants to be left alone and to live the rest of her time in peace. My role as POA is to make sure her wishes are honored, no matter what, correct?
In 2007, my dad was diagnosed with what ended up being a terminal recurrence of his cancer and wanted to participate in the experimental option offered (even if he knew he would be in the placebo group) as he wanted to feel his life might help others. He and my mom made decisions with Hospice that wouldn't have been my choice but that I clearly understood were theirs and we respected these and helped as we were able.
Fast forward a few years to when one of kids was in med school and shared a reading assignment with us that was life changing. The book is "Being Mortal" by Dr. Atul Gawande (sp?). After reading this, and knowing that my mother was starting to show declining health, we were able to walk her through looking at her end-of-life planning with her attorney and make needed changes which were a Godsend when she had a life threatening illness and was later diagnosed with Alzheimer's. .... At this point, I want to strongly recommend you share information about this book with your loved one's doctors. After the care journey for my mom, her docs came back to me and asked what the books were that I had had kept recommending to them because they realized that the core training they received in medical school missed some critical knowledge (the other book is the 36 Hour Day - wouldn't have made it with any shred of mental health without these two books).
During my mom's last 2.5 years, my father-in-law was diagnosed with cancer and mother-in-law with frontal temporal lobe dementia. For the last year of my mom's life, both moms were in the same memory care facility which helped immensely.
When FIL's cancer recurred for the 3rd time he was still able to read, plan, and process choices about his care but wasn't being given information on any options except more surgery and debilitating treatment. We gave him a copy of this book and asked him to raise any questions he might have about his options with his caregivers. After reading it, he met with his legal and financial advisors to clean up gaps in his end of life care decisions that he didn't even realize were there or how these gaps could keep from having his and MIL's wishes respected.
Even now, we continue to see how even the most common sense decisions need to be thought about and put in writing. After losing both my mom and FIL within 10 days of each other during the summer of 2017, we are now the sole caregiver for MIL now on Hospice. We have discovered that antibiotics are still administered while on Hospice even when the end of life directives specify no treatment that will extend life because they fall under comfort care. So, we will be making sure to revise our end of life documents to address this for hubby and myself so that decision isn't going to be a "wonder what Mom/Dad wanted" decision for our kiddos.
We had talked about some of this but without the book, FIL never would have opened up (old school man takes care of his family, doesn't show emotion, doesn't want to be burden type) nor would we have had a framework for discussing the topic with our children.
Once we were in the midst of the mess with the parents, we felt totally helpless most of the time, but being able to do something where we felt we could control our decisions helped to keep us grounded.
One's wishes before dementia kicks in, if sensible, are fine. After, or if there is ANY concern in judgement, I would question it. Wishes, within reason, are fine. If my mother told me to take her out back and shoot her, that would be her wish, no? Would I comply? Not a chance! If she wanted to travel to FL for the winter, like she used to, would I let her? No. She can't possibly do that, not even with help!
Given that she delivered a letter stating her "wishes" and now doesn't recall it... I would question it. If there was any way to coax her into taking her medications, even if it is for her to be able to care for her dog, I would work on that - someone other than you might have to be the one to convince her. Often they don't listen to us or dismiss our concerns, but they will work with others. A visiting nurse? The doctor?
If she doesn't recall the letter and doesn't really understand the implications of not taking her medications, she could end up a lot worse off, being disabled, bed-ridden but still alive... hardly would be able to "live the rest of her time in peace."
Does she like and trust this doctor, is it her PC or her Endo that decided she was incompetent based on this letter? I ask because I agree with your instinct about honoring her wishes, it not only honors her but also protects you as hard as knowing and honoring that might be but this isn't as straight forward for many of the reasons mentioned below and I can tell you my family has found somewhat of a happy medium. It sure sounds to me like this letter is the primary reason this doctor has decided she is incompetent (you may have the opposite issue of so many others here who can't get a doctor to sign off on incompetence even when it is far more obvious) likely in large part to protect themselves and while this may be a godsend later it doesn't sound like you feel she is "incompetent" or frail. So while you do have some extra power if you will, which she gave you, it doesn't mean you need to exercise it in that way. Depending on some of the answers to my above questions, if I were you I would have a real discussion with mom. You actually are set up to be her "protector" and confidant even more here and have the perfect opening to a discussion. "Mom Dr X contacted me out of concern because you have decided to stop taking your medication and your blood sugars are getting to damaging levels. I told Dr X I would talk to you about your reasons because I feel like you must have a good reason, what made you decide to stop any medical intervention"? Then depending on her response of course I would tell her your fears for both of you if she makes this choice, would she prefer to have a stroke or have a major cardiac event than take some pills? Has she thought about the issues not taking her meds could cause (and I would present each independently) and chosen to live with those over taking her pills a couple times a day? If the answer is yes and you feel she is making that decision clearly... I would break this up into several conversations over days or weeks for my mom, giving her time to digest and think about each piece of the topic, when you dump it all on at once it's gets lumped together and feels so overwhelming she can't pick out the things she comprehends as negative, instead the whole topic is negative and throwing her hands in the air, washing her hands of it isn't a surprising reaction. I wonder if something like this was happening between your mom and the doctor.
My point being you can honor her wishes while watching out for her best interest too and it sounds to me like you are very in tune with both of those things so work with her, find out what's at the root of this move and see what solutions there might be that does both. Making sure she feels respected and heard, in control of her life and accepting your help will make a big difference to both of you. At least this has been our experience with mom and because of that she usually goes along with things she doesn't really want to do but knows she should because ultimately she trusts our judgment. We also find at times when we get the root of her reasons for refusing something it's because she has built up a whole misunderstanding about the topic and that often gets her into a tailspin of anxiety and denial so dissuading her fears helps all of us.
Now that she is in MC, I have seen how some living there refuse medicine and/or necessary treatment (one was wound care.) The staff told me the residents do have the right to refuse. However, knowing that some of these medical treatments are necessary without being invasive, they use every trick they can to coax the person into agreeing. Usually they get it done without having to force anyone. Good care-givers have ways and persistence!
SonOutOfState said "Caregivers should respect their parents wishes. There is a huge difference between 'sustaining life' and 'prolonging death'. Suspect that most here would choose 6 months of quality time at the end vs. 6 years of 'existing' in a facility."
This I wholly agree with. There IS a huge difference between maintaining current care without being invasive or going to herculean heights to "save" a life. When mom and dad did all their EC atty paperwork, one long form was regarding medical treatment, aka what interventions they did/did not want. Our mother takes BP meds, necessary antibiotics if/when she gets an infection, some OTCs for minor issues. These, to me, are not artificially extending life, just making the current existence sustainable. She also should have, as she always said, had her knees done long ago. Now, at 96 with dementia, no way would I even consider it, although it would eliminate the pain she sometimes experienced (we did try injection once.) She and dad had DNR and both declined major interventions on their forms, so I would go along with that. If it is something that is treatable with minimal impact, I would have it done (we continue her macular degeneration treatments to preserve her eyesight - with little/no hearing and now refusing to stand/walk on her own, she would end up unable to do much of anything, so we need to keep from losing her eyesight!)
I would lump diabetic treatments, so long as it doesn't require excessive intervention (such as hospitalization), in this same category. It isn't that invasive and it can prevent a whole host of nasty implications, many of which would likely be very cruel and painful! My uncle lost some toes (after he injured them dropping his weights on his foot!) and then his foot, to diabetes. Eventually he just wanted to let go, but he was in a pretty bad state - not "sassy", able to take care of himself and his finances, etc. He was already in a NH before this happened.
OP says "...you would never know that she's ill." and "She grocery shops, manages her finances, takes care of her dog, etc. She 4' 9", 90 lbs. and is full of sass."
She certainly sounds as if she can still manage a lot, but if she is in early stages of dementia, her brain will lie to her and she will think she is "fine." Since she has a dog, she most likely cares very much for it. I would try using him/her as a way to convince mom she needs to continue her own diabetes treatment. If you can provide documents that show what kind of impact diabetes can have when not treated, and then ask who will care for "Spot" if you are sick, hospitalized or die? Putting the focus on this poor dog's life might change her attitude (and might need reinforcement from time to time if she has dementia.) She will also have to see/know/acknowledge the diabetes somehow, if she is saying she doesn't have it!)
I helped my father with his living will and even took him to the bank and had every single page notarized.
Thankfully, he was still in his right-mind when he decided to stop dialysis and we called in Hospice. Hospice did an evaluation and could see that I was trying to allow my father to make his own decisions.
As her DH-POA, your responsibility is to make sure her desires are fulfilled.
If there is a question about competence, get an attorney:
National Academy of Elder Law Attorneys
NAELA Council of Advanced Practitioners
1577 Spring Hill Rd., Suite 310
Vienna, VA 22182
Making sure her wishes are honored no matter what... it's more yes, but. When people draw up their advance directives and similar, while it is true that they are of sound mind it is equally true that they cannot know how they will feel about challenges such as pain, breathlessness, anxiety, and - not to put too fine a point on it - fear of death when those challenges come.
Yes honor your mother's wishes, but do leave her some wriggle room.
Mom has ALZ. She constantly talks about being ready to die, ready to leave this world she no longer recognizes.
The idea that someone is potentially going to ignore my desires when my time comes is infuriating. There is a reason many Americans incur 80% or more of their lifetime medical cost in their last years...doctors and facilities make their livelihood keeping them alive.
Caregivers should respect their parents wishes. There is a huge difference between 'sustaining life' and 'prolonging death'. Suspect that most here would choose 6 months of quality time at the end vs. 6 years of 'existing' in a facility.
Will there be consequences? Yes. But as you described your mom, I am fairly certain, she knew that when she assigned her POA/medical directive. Ignore the 'advice' from some here to keep mom alive and do what she trusted you to do.
Prayers that she goes peacefully.
If that were my mom I would have confronted her about this, and insist she get treatment immediately--or call 911 for such a Baker Act if she adamantly refuses. You are talking about your mom's life, and you don't even know if she is competent. Maybe she is clinically depressed which can be treated..or she may be confused from high sugars. You need to fight for her if she is unable to do so herself. That is what I would do if that were my mom.
My husband is diabetic, drug compliant, but food? Although he always takes his meds three times a day, he skips meals, stocks up on junk food and snacks when I go away for a few days, and ignores the healthy food choices I leave in the fridge. He has a trade certificate in catering so he knows full well how to cook. The annoying thing is he is well within weight range and his bloods are always good.
In tbe early years of diagnosis the diabetes nurse used to read the riot act ... the dangers to heart, limb, teeth, eyesight et al, but it was water off a ducks back. When none of those things happen I guess it gives patients a false sense of security. Sounds like your mother might be in that category.
I have enough health issues of my own, so I decided years ago that it is his body, his life, his choice, his responsibility. He knows not to complain to me when something is slow to heal, or he is having a hypo....although I must admit I do jump to attention when that happens. But no empathy from me. I suspect the diabetes nurse educators he sees all these years later are similarly inclined.
I live in another country, our bloods are obviously described differently so I have no idea just how off the scale your mother might be. If your mother is not insulin dependant, just takes tablets like my husnand, she might get away with not looking after herself properly. She certainly sounds spritely enough. In which case is it worth while antagonising her, especially when she sounds lime she ignores advice anyway?
Didn't eat right, refused any exercise, just a PITA patient.
Wound up with 2 'widowmaker' heart attacks----the culprit? His 'controlled diabetes'. At first he was terrified and lost 40 lbs and sort of exercised---but as his blood sugar and A1C are fine, he again had put on 30 lbs and is sedentary as can be. It's like that harrowing experience didn't even touch him. I don't get it.
He actually had the gall to tell his cardio surgeon that he was overweight b/c I am too good of a cook. The doc laughed himself silly over that--asked DH if I was shoveling food in his mouth 24/7--that's how non compliant he was.
He's back to eating poorly, not watching his blood sugar and not caring how worried I am about him. I feel like I am watching a slow death by disinterest---and I am.
I have done LT caregiving for him several times in the past and he is a terrible patient--I know my last years will be caring for someone who doesn't care for himself. It's hard. I went through cancer last year and he did not do a single thing to help me. I'm still recovering from the chemo and will be for several months---and he doesn't lift a finger.
You can't help someone who refuses to help themselves....I wish you luck in this.
It is ethical to discontinue meds and testing if that is your mom's wishes and the doctor must honor those. YOU are your mother, for legal purposes, once you have her PoA. It's not about prolonging her days but making her comfortable and helping her feel at peace. Good luck with all this.
Tell her that you want to make sure you are properly following her wishes and go over the POA item by item. Share with her what people here have said - that going without certain measures could leave her in pain, and let her know that you don’t want to see that happen to her. You need some wiggle room so that you can make adjustments to her care in order to make her life more comfortable - not heroic measures, but little things so that she is not in pain.... tough, I know.
Oh; most "independent" places allow the residents their time. Let's not kid ourselves, and moving her is not a good idea, will only confuse her unless the house wants her gone.
Keep it simple...