Decision Time: To Live or Not to Live
My head has been pounding all day. My DM made me her all-in-all as it pertains to her end of life matters. Out of 2 children borne, only 1 remain. Me! A terminally ill retired RN.
When mom was in her "right mind," she NEVER wanted surgical attempts be made to correct her Afib. With Vascular Dementia and Alzheimers now being in the mix, mom has spent upwards of 18 months vacillating about doing the surgery or not.
I've reminded her that she never wanted it and her stated reasons why not. Later, asking me what decision I would make if I were in her place. I again reminded her of her own decision. Having gone back and forth a few times, she made the decision to have the surgery. I told her I will support whatever decision SHE makes. It will be next week.
The problem is this, I do NOT think she should have the surgery. One surgeon told her that the group at highest risk is octogenarian women.
Today, I broached the subject of being a DNR (do not resuscitate). She has a Living Will from 2017 in which she consented to be resuscitated and kept alive in whatever state she is in for SIXTY DAYS. That is INSANE! The DNR would trump the Living Will. Mom categorically & emphatically states she wants to be a full code, like wth.
She is also a retired RN, so she knows what that entails. I reemphasized that they will bring her back to life with Alzheimers, perhaps even to a more advanced stage.
I am her Healthcare Surrogate. I do NOT want to express my view and end up speaking contrary to her desires. The hospital paperwork asks if she has a Living Will or a DNR. I do not want to give them a copy of her current Living Will because they will be instructed, by her, to perform heroics.
My husband says I need to fulfill my role as her DPOA, not her daughter. I am so saddened. I do NOT want to do what I am expected to do, overrule my mother's stated desires.
Any and all thoughts, comments, or feedback would be GREATLY appreciated.🥺
Comments
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What a horrible situation to be in. I am so sorry. The decisions (surgery and DNR) are complicated. There are so many things to consider. Not just the surgery and potential complications, but recovery, will she cooperate with whatever is needed to recover properly, how it may affect her dementia, how much more time might this surgery give her or take away, what will her quality of life be like after the surgery, how fast will her dementia progress with or without surgery? Dementia can affect logic and reasoning and make it difficult to make sense of a very complicated decision. If she has continued to change her mind over and over this may be why. If she has even a hint of anosognosia, her decision is being skewed by her inability to understand completely her dementia. In my opinion this is not a decision she is capable of making. If you decide she should not have the surgery, I would tell her the doctors have decided it is too dangerous. If she finds out you have made this decision she may become angry and resentful that you would not let her make it herself. You don’t need that! If you choose to go through with the surgery, I don’t know about the DNR. Since the living will was made prior to dementia, it seems reasonable that you should be able to over power that, but you might want to talk with a lawyer. On the other hand if no one else knows about it, maybe you would just be making trouble for yourself by bringing the living will to light. I guess you could claim you forgot about it. I have often asked myself what I think mom would have to say about a particular situation before dementia. I think that is what you should do. If you believe she would never have wanted this surgery then it should be canceled. Did you ever get anything in writing from her neurologist stating she is not capable of making medical and financial decisions. I assume that with the DPOA they will let you make these decisions without there being problems. What a gut wrenching situation.
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@H1235, gut wrenching it most definitely is. Those are some very serious leading questions you have posed. Honestly, I do not have the answer. My fear is two-fold.
- She could come through the surgery physicaly fine, but cognitively worse.
- She could throw a clot, bleed out, or arrest on the table.
I have definitely thought that since I am the only one aware there is a Living Will, I could just continue to keep that bit of information to myself. Then the massive guilt sets in…
No doctor has deemed her mentally incompetent. Therein lies the issue.
If she was deemed incompetent or incapacitated, I would feel confident in speaking freely for the pre-dementia mom I knew. I would say "No" to the surgery and "Yes" to being a DNR.
Because she still retains some level of cognition, and has now opted for the surgery and rejected the DNR consent, I do not feel comfortable expressing my own views. I really don't even know if I can legally speak as her Healthcare Surrogate while she can express her own thoughts. I can, and have been, functioning as her DPOA as it pertains to financial matters.
Thank you for giving me food for thought.🩷
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What a predicament for you. H1235 has some good points. It's so hard to think about going against your parent's wishes, but if in her "right mind" she already decided against surgery, I think you are right to stand by THAT decision. She gave you health care proxy and DPOA for this very situation, so that you could evaluate risks vs benefits and make a decision in her best interest when she is unable to reason through the complexities and consequences. If you have the luxury of time on this decision, you could request neuropsychiatric testing and a competency evaluation to make yourself feel better about overriding her wishes.
Regarding living will: I've been a nurse for a long time too. I've never seen a health care provider or system follow a living will against the family's wishes, and in particular over a legal proxy decision maker. You correctly judge that resuscitation and keeping her artificially alive for 60 days would not improve her quality of life, including her stage of dementia. You would be faced with all manner of related clinical and ethical decisions, which I'm sure you can imagine. My heart goes out to you.
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@psg712, thank you for your input and the empathy.
Unfortunately, I do not have the luxury of time to go about getting a competency evaluation. Surgery is scheduled for Moday morning.
You are correct. If found to be incompetent, I would have peace of mind in speaking up for my pre-dementia mother as pertaining the surgery. However, my distress would remain in regards to her code status. Pre AND post dementia mom insists on being a full code. I wholeheartedly disagree with her on that. If I sign the DNR, as her proxy, I fear being accused of having given up on my mom and God knows that would be the furthest thing from the truth.
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I feel for you.
Dad had a hernia at this time last year. I struggled with the surgery decision. He was having pain and it was worrying for him so I made the appointments and went through with the plan.
Keeping him in his bed and from pulling out wires and tubes was truly next to impossible as he woke up after surgery. It was exhausting and scary.
Then keeping him from picking at the bandages as he healed was just as impossible.
We got through it, but that experience caused me to painfully understand the advice given here by so many about treatments and procedures. They often cannot understand or follow through with what's needed for healing afterwards.
I have an illness that is stress related. I ended up in the ER myself in the midst of all of this with dad. It was a rough time.
Of course that's just one story and your mileage may vary. I thought I would offer it to you as you consider the big picture for your loved one and for your overall family wellbeing as you travel this piece of the journey.
I am wishing you well. 🙏💜
Jen
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@JulietteBee my heart goes out to you in this harrowing situation.
This is one of the most difficult positions caregivers can face because there isn't just one burden—there are several happening at once. You're carrying this as a daughter, a healthcare surrogate, and a nurse—all while facing your own health challenges.
One thing to remember is that your role isn't to make the decision you think is best, but to help ensure your mother's wishes are honored if she still has the capacity to make them. This is tough. If there's uncertainty because of her dementia, ask her medical team to formally assess her decision-making capacity and consider asking for an urgent goals-of-care meeting before the procedure, with everyone on the same call if possible.
Questions like these can help:
- "Do you believe my mother currently has medical decision-making capacity?"
- "Given her dementia, what is the realistic best-case, expected-case, and worst-case outcome?"
- "If CPR became necessary after surgery, what are her realistic chances of returning to her current level of function?"
- "Should we involve the hospital's palliative care or ethics team before proceeding?"
Those conversations often bring much more clarity than trying to resolve everything at home.
Whatever happens, don't carry this burden alone. Lean on the healthcare team, your husband, and anyone else who can support you. You're doing the best you can in an incredibly difficult situation, and that alone speaks volumes about your love for your mom.
Above all, remember that your dedication to your mom is deep, and it’s equally essential to nurture your own spirit.
Stay strong, and allow yourself moments of grace.🩷
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My point with those very difficult questions was, that if they are difficult for you how could your mom with dementia possibly consider them all when making a decision. Just because she is physically able to speak and answer a question, doesn’t mean she can make a tough complex decision. About 6 months after mom was diagnosed I did get a letter stating she was not able to make medical or financial decisions. There was no additional test done. I just ask the neurologist through the patient portal. I wonder if her neurologist would be willing to write that letter now, just based on previous testing and interactions with her. I suppose you could try just calling the office and asking for it. Maybe the best thing to do is postpone the surgery.
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If she's not deemed incompetent and wants the surgery, are you legally able to postpone or cancel it as the POA? I am my mom's POA but she was deemed incompetent last year. Her MC has the copy of her living will she made back in 2011 and I signed a DNR not long ago on her behalf after discussing with her MC healthcare team. My sister and I wanted to honor her decision so we will follow the living will instructions. With that said my mom has no other health conditions which makes it easier because we would be making decisions about new concerns. I really feel for you. You will probably feel guilty no matter what you decide. I agree with Daisy4U to lean on her healthcare team and other support. Is her condition "fixable"? Can it wait until there is more info about the possible outcomes (meaning, will there be more surgeries needed)? Would your mom be upset if you asked her to postpone it until more questions are answered?
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So difficult. I'm praying for you and your mom as the surgery approaches.
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I see your conundrum. I would keep the living will to myself. However that may not solve your issue because of the way the medical POA ( not the financial and legal one) is worded. The one my parents had was marked ‘ if incapacitated’. So if the doctors thought my parents were up to it, they could have deferred to their verbal wishes at the time they were talking to them. So you could tell the hospital no DNR, but they would ask your mom right before surgery and follow her verbal wishes. At the beginning, I had to go with what my parents verbalized. As time went on, the doctors started deferring to me for answers if I was in the room because my parents were 1) hard of hearing and 2) obviously not understanding the question.
My step-dad always wanted a full code too. When he was evaluated for hospice, I didn’t attend because I wanted him to accept hospice- he would not have if he thought it was my idea. The AL nurse attended the evaluation for me and persuaded him to sign a DNR.0 -
Thank you all. I read all comments and appreciate the input and various points of view. I will respond to each post as soon as I am able. I am at the hospital with mom. Her level of disorientation suddenly became alarming. Her PCP told me to take her to the ER for possible UTI. Rather than sending her home on antibiotic pills, as was expected, they chose to admit her and give IV antibiotics.🙏🏽
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@JulietteBee
I am truly sorry for the place in which you find yourself.
In many ways, you are in the most challenging spot of the dementia care arc— your mother is in that mid-stage where there is still enough cognition to express a decision but not the executive function or reasoning to make a truly informed choice. I can appreciate wanting to protect her from herself.
The piece below (gifted link) isn't specific to your situation, but it speaks to the emotional weight of making decisions on behalf of a parent whose opinions have been changed by dementia. I found it thought provoking.
https://www.nytimes.com/2023/10/23/opinion/alzheimers-dementia-advance-directives.html?unlocked_article_code=1.tVA.k1-U.ngn5L5pl3Su3&smid=url-share
Warm thoughts from another daughter who was up most of the night worrying about her mom.
HB2 -
Oh, I am so sorry about this impossibly difficult position you are in. I have no comments to add to what has already been said, but I too want to send hugs from another daughter. ❤️🙏🏼
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@jen ht, thank you very much for sharing your story.
Like you, I am picking up from other posts how difficult a job it will be for me to get her to follow her post surgical discharge orders.
My husband and adult child fears for my health suffering as mom "recovers" from surgery, while simultaneously experiencing worsening cognition post anesthesia.
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@Daisy4U, wow! Thank you for sharing those vital questions I should have answered.
I do not have time to call for said meeting, BUT with the insight you jus gave me, I will certainly ask her surgical team on Monday. That will be the last set of doctors I will see who can weigh in, BEFORE surgery starts.
As a nurse, I can tell you that surgeons do just about ANYTHING to keep their patients alive throughout surgery. Sadly, the patient may die in the RR afterwards but I know surgeons are loathe to let a patient die on the OR table. My speaking with them actually will now give them the ability to abide by MY desires to have her treated as a DNR.
Thanks again!🫂
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@H1235, I understood and appreciated the point of your questions. Looking back now, I am wondering if mom requesting to be a full code and maintained on life support for 60 days may not be in fact one of her earliest signs of impairment that I may have missed.
I cannot postpone her surgery. I will explain in a separate comment. However, with mom currently in the hospital with an upper respiratory infection, possible urinary tract infection, and increased level of confusion and sleepiness; the surgeon himself may opt to cancel her surgery. That gives me an out. I can tell her the surgeon canceled, not me.🙏🏽
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@pamu and @Quilting brings calm, thank you for totally picking up on the magnitude of the conundrum I am dealing with.
Mom has NOT been deemed medically incompetent by any of her doctors. My wishes cannot trump hers.
Mom, being a retired nurse, apparently has perfected the art of showtiming. Everyone who sees Mom expresses how amazing she looks for her age and how well she speaks. One day, early this year, I went with mom to a doctor's visit. The doctor wanted to start mom on a new medication and called it by its generic name. Mom blurted out its BRAND name and asked the doctor if it was not the same drug. The brand name had stopped being used since the early 90s. Mom remembered that fact and I didn't. The doctor and I were both SHOCKED.
Pamu, because mom falls in the highest risk category, her surgery cannot be postponed any longer. 85 year old patients become ineligible as surgeons are not willing to do the surgery on persons older than 84. Mom turns 85 in 6 months.
Barring Divine intervention, she is scheduled for surgery on Monday morning.
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@harshedbuzz, thank you for the link. It was very enlightening.
Thank you for the empathy as one daughter to another. This road is dreadful and I want to get off. Sadly, it is the path I must travel, whether I like it or not.
I have also heard and learned that the mid-stage is by far the worse stage. WhilebI do not want her to advance further, in a way I need her to. Her advancement will unlock my full potential to advocate FOR her.
You summed it up well. I desperately want to save my mom from the alzheimers patient who is now making decisions for her.
I know for a fact that if my mom were afforded a sound mind for 1 week, she would eloquently state her desires not to have this surgery because it affords no guarantee that it is a one and done.
The mother of a gf of mine had mom's exact procedure last year and ended up in the ICU for a month as they accidentally perforated her heart in the process of "fixing" her cardiac problem. That terrifies me, not to mention the effect anesthesia is going to have on her mentation.
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@ARIL, thank you for the hug and your kind understanding. Being the daughter of a pwd is a very sad and lonely journey. Hugs and well wishes back at ya!💐
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Point to mention:
I reached out to my assigned alzheimers Navigator. She got back to me and informed me that in my state, the law does not allow me to invalidate mom's Living Will unless she has been deemed medically incompetent by 1-2 of her treating physicians.
That being said, along with the insightful article @harshedbuzz shared, mom's pre-dementia and post-dementia self has not changed. She STILL desires to be a full code.
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@JulietteBee
It would be a blessing if the UTI and URI were enough to postpone the surgery, which can be iffy even for a younger person. If the confusion were to escalate to delirium, that may work in your favor as well. I share your concerns about anesthesia. Ablation (assuming that's what she's scheduled for) can take hours. My bestie's DH was in surgery over 8 hours.
Memory is LIFO— last in, first out. Normally it would be impressive to recall a brand/generic pair from the 1990s. For a PWD, recalling the brand name for a newly approved medication would be less likely.0 -
@harshedbuzz, I've been personally hoping & praying that one or both infections will be the cause for her surgery to be canceled.
Yes, she is scheduled for an Ablation with insertion of a Watchman. They said on average it will last 2 hours. I honestly do not know which of the following outcome terrifies me most, intraop/postop complications, or significantly diminished mentation due to anesthesia.
I do understand L.I.F.O. The reason I was shocked in that moment was that my mom appears, for the most part, that she has forgotten my genetic health challenge. I did not know how she could forget something so monumental from so many decades back, yet remember with such accuracy the insignificant brand name of a drug she used to administer in the 90s.
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@JulietteBee said:
I do understand L.I.F.O. The reason I was shocked in that moment was that my mom appears, for the most part, that she has forgotten my genetic health challenge.
Maybe it's a function of the loss of empathy or even a conflated memory. Early on in the disease progression my dad was very inwardly focused. I can recall him driving mom to wait on him days after knee replacement in the middle stages. He had zero Fs to give about her need to recuperate. By later stages, he insisted he'd been the one to have had knee replacement and tried to show me a scar on his elbow to prove it.
Fingers crossed for you both.
HB3 -
I hope all goes well tomorrow. I will be thinking about you.
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I am also thinking of you @JulietteBee 💜 🙏
Hugs from yet another daughter.
One time when I was having a tough time a friend asked me to imagine her in the next room. May sound odd, but it truly was a comfort for me somehow. So… think of us here online as with you in one of the rooms next door. 🫂
Jen
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Aww @jen ht, I love that. I will visualize all the supporting adult children who are praying for, and rooting me on, as I embark on an all day, hurry up and wait type of day tomorrow.
Thank you, @H1235! I appreciate you and your well wishes.
@harshedbuzz,thank you for the :well wishes and for always seeking to breakdown complex matters into small bite size bits for clearer understanding.
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Thinking of you and your mom today.
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@harshedbuzz, thank you! We have been waiting. We already crossed the 3 hour mark and I am ready to jump out of my skin from worry & fear. THEY had told me it would take 2 hours. You are the only one who mentioned otherwise, that it could last 6 hours. Yet you are the one who spoke truth to the situation.
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@JulietteBee - thinking of you.
I HATE 'this'….
@harshedbuzz - thank you for the article link. Seems that advanced directives should probably be more distinct and maybe just a little more detailed about what 'Quality of Life' really entails… while still able.
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Thank you, @SusanB-dil!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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