Good morning, All!
It has been about 3-1/2 years since I first came here, desperate for help with my mother who required care I could not provide - either myself, or in my home. It has been a bumpy road since then, but ... I'll skip that recap to focus on where we are today.
My mom is 86, and battles hypertension, high blood pressure, congestive heart failure, Type 2 diabetes, Stage 2 kidney disease ... she has had double femoral bypass (2014) ... my mom had two heart attacks this year - one in January, one in October. After her second heart attack this year, she had angiogram and angioplasty, opening up two left-sided arteries with stents. That was done outpatient, on December 3. On December 8, she collapsed, cardiac arrest - was rushed to the hospital. She coded twice within the first few days there, and they put her on a temporary pacemaker, planning for a permanent one. They could not proceed until they got her white blood cell count down, and in the meantime, theorized what was causing the issue, the heart suddenly stopping. The theories included AV block caused by a clot, medication interaction ... well, on December 13, she went into cardiac arrest that lasted 30 minutes. By some miracle, they revived her - and her cardiologist said to me, "something is wrong, I need your permission to repeat the angiogram, even though her kidneys will take a hit". I agreed - and they discovered she had a heart attack on her right side, which is apparently rare - and found significant damage and blockage on the right side, ending up placing three more stents there, bringing her total to five - two on the left, three on the right. Doctor explained to me "they found the problem, and fixed it". They placed a permanent ICD (pacemaker/defibrillator) successfully to boot.
He also told me she had "clear CT scans of her brain" ...
She was intubated and sedated. Doctor said they would start to wean her off and wake her up within a week.
Well, that was December 13 - two and a half weeks ago. They stopped all sedation. She wakes, opens her eyes, looks around ... but, no meaningful engagement, responses to commands, anything like that. No change now for many days.
They said it was no longer safe to keep her intubated, so ... they did a tracheostomy/GI tube. Now they are talking about starting the process to transfer her to LTACH.
The question I am strugging to get answered is ... will she ever truly "wake up"? Does she have life-altering cognitive damage from the hypoxia? Will she heal over time, even slowly?
I'm in the driver's seat on decisions, and feel like I am grieving someone despite them looking at me. I came here, to seek the wisdom of all of you, of anyone who has had a similar experience ... I crave anything, as I'm running on one tiny little fume, and at a loss what decisions I should be making at this point.
Grateful for all of you, and for this forum.
Edited: just saw your brother is health proxy
As to my mother's condition prior to this ... if you asked her, she would insist she was fully independent. She was living with my brother, and has been for the last two years. If you asked me, she struggles significantly with mobility (she uses a walker, but, at her own peril), and has some cognitive remnants from her stroke in 2022. That said ... she was conversant, bright, engaged, and actually fairly sharp. Her long-term memory in particular was sharp as a tack.
My brother has primary authority on medical decisions that concern her, legally; I am only empowered to govern in instances where my brother cannot. This is frightening in some respects, but, possibly comforting in others, dare I admit ... I am all-in supporting the situation, but, there's no use trying to override my brother, who seems committed to optimism that my mother will recover (maybe not fully, but nearly fully - he doesn't seem to have processed that she will never be able to return "home").
She shows tiny, infinitesimal signs of recovery each day. She now moves her head back and forth, tracks with her eyes, facial expressions, moves her feet and legs ... when I went to hold her hand yesterday, she recoiled, and I think it was because I had just come in from outside, and my hand was cold. She has moved her mouth a lot - she's had the trach for 3 days now, and was intubated prior to that for 16 days ... she's been almost able to fully close her mouth, and even cracked what looked like an attempted smile yesterday. I know I have confirmation bias, so, I'm not suggesting this is evidence of anything more than what it is ... tiny signs. No practitioner at the ICU seems willing to dare make a prognosis or guarded estimation on how far those tiny markers will go.
We are amidst the transfer to LTACH - probably within the next few days.
My heart vacillates between broken, angry, hopeful, riddled with grief ... uncertainty can be its own form of torture.
I continue to be grateful for two incredible miracles in my life. One - the ICU nurses, who I live in awe of every day. And two - all of you. Thank you for your continued counsel - not just kind words attempting to lift me out of despair, but your honest renderings and viewpoints, which I trust and appreciate, however painful they may be.
The decision that has been made is to transfer her to LTACH. What I'm hoping to do is set up a "goal of care" meeting with the team there, and set some boundaries ... I want her to recover, without a doubt, but I absolutely am not willing to sit idly by and be a witness to her suffering without acting and intervening. That may be the greatest act of love I ever have to offer her.
Now you also ask about hospice. This is comfort care in which family will be asked to withdraw support. At least hospice should cover for bereivement counselling. Both choices are completely separate. Do you want to prolong her life? She will not return to baseline. Do you want her to suffer longer? You will be suffering with her
Thank you for sharing your experience and wisdom. I'm certain there's encephalopathy in play here ... the question mark is, how much. She was in arrest for 30 minutes. I am not as hopeful as my brother ... but, I'm also hesitant to argue with him, at least at this moment. That could change ...
She has been bedridden since December 8. I cannot even fathom the degree of muscle wasting and atrophy that has taken place.
My heart feels as though it weighs 10,000 pounds. :o(
Has no doctor here approached you at any time as to code status?
Has your mother no advance directive defining what she would want at the end of her life in terms of heroic measures?
Have you and your mother never discussed what she would want at the end of her life in terms of heroic measures or code status?
I may think about this differently, due to my history, than you as a lay person would, but it surprises me that no MD, no specialist, no Social worker has at this point come to you with advice, with options for this 86 year old woman.
My Advance Directive has long forbidden anything like ventilation, IV nutrition, NG/PEG nutrition, Dialysis, Pacemaker (have atrial fib for many years now), and etc. I am 83 and my wishes regarding all of this is extant now for over a decade. Why do I not want these things (including stents)? Because they will prolong a life, often with many deficits--a life without perhaps a bit more quantity, but void of quality.
I must hope that you and your mother, you and her doctors, you and social workers or ethic committee have had discussion. I must rely on that and your own common sense as regards her age and her medical condition, for a quality of life. If you are uncertain I would ask you to thoroughly discuss these things with doctor, social workers, family, clergy.
I must CAUTION YOU that if you choose hospice, when the end of life draws near, you ARE CERTAIN to have the defibrillation portion of any implanted pacemaker turned ODD. Without doing this, the person dying, attempting to die, will be subjected to continuous shocking. Generally this specialized pacemaker is inserted when a person has experienced premature ventricular rhythm causing cardiac arrest. I would never have placed such a device in someone of this age; it surprises me that no doctor thoroughly explained what it does, and options regarding placement or not placing.
Only you can make decisions now. It is not my place to tell you what those decisions will be as they must come from what you know of your mother, what you want for your mother and at what cost, and the advice of your medical team.
People will tell you that "miracles happen". Perhaps. But we will none of us get out of this alive (something always clear to me as an RN, but crystal clear to me as an 83 year old).
I cannot know how your mother felt about fighting for life, what she considered quality of life, what she would have wanted. You know that much better than I. I can only wish you the best of luck going forward. I can only tell you how I myself feel about "life" in our latter years, and about heroic medical treatment at a certain age--what I PERSONALLY think and feel. I am not you. I am not your Mom.
You ask if we have experience. Yes, I have a LOT of it. But I am not you.
I truly wish for the best. I hope you will bring your mother what you feel will be best for her in terms of comfort.
I am so sorry for all she is going through, has gone through, and for your grief standing witness. My heart goes out to you.
To your thoughtful questions:
Has no doctor here approached you at any time as to code status? No, no doctor has approached me or my brother, nor given any concrete "code status" information of any kind.
Has your mother no advance directive defining what she would want at the end of her life in terms of heroic measures? Her directive clearly states "any and all Herculean efforts to keep her going", unfortunately. Although I am still not convinced she meant to include plugged into several machines for an extended period ...
Have you and your mother never discussed what she would want at the end of her life in terms of heroic measures or code status?
She has - but, it has always leaned towards "keep me going!" kind of language. My mother has never been one to dwell solely in the realm of the rational.
One of her last "conversations" in the ICU was her telling the nurses she wanted a milkshake - and when they explained that they could not do that, she was on a strict cardiac diet to help heal her heart ... she told them to "f-off", that she knew better than they did what was good for her heart.
I think without her determination and sass ... she may never have survived this far in the first place.
She could go to a long term care hospital and be on Hospice.
If I were your mom I would tell you "I'm done, I am sick and tired of being sick and tired"
I would do a POLST. More detailed than a DNR.
I would discourage a feeding tube. Hospice will accept a patient with a feeding tube and they will provide nutrition and care for it but they will not put one in on a Hospice patient.
If you could talk to your mom 10, 15, 20 years ago what would she tell you to do in this case? Some people are of the "do everything you can to prolong my life" others are "if I have no quality of life just let me go"
Let these decisions be made with your HEAD not your HEART.
🙏
My brother is a biology and physiology professor at college. Which seems to be a pedestal of his decision making at the moment ... although I would argue his heart is plaguing his head right now ...
Your mom will either wake up and regain her faculties after she's extubated or she won't. To me, that's allowing nature to take its course w/o further medical interventions which created this chaos in the first place. Exactly HOW MANY procedures is an 86 year old body supposed to tolerate before it gives up? How many disease processes? If this were my mother, I'd have her extubated and bring hospice on board to keep her comfortable. No LTACH, no more procedures, no more tubes and needles.....just allow the poor woman's body and mind to decide if it's going to heal or shut down. Either God is ready for her or He's not. You won't know until you stop allowing medical science to intervene.
Best of luck with a difficult situation.
And, you aren't kidding, about the amount of interventions ... her medication list alone would weaken the knees of most of us. She is currently supported by double femoral bypass, an internal pacemaker/defibrillator, five arterial stents, a tracheostomy, IV fluids and medications, and a feeding tube. It's practically an M. Night Shyamalan movie at this point.
What I grapple with most is ... is she in pain. Is she afraid. These thoughts plague me constantly, and keep me up at night.
I am an avid rescuer of senior dogs ... and silly as it sounds, I would never put a dog through what my mother is enduring. This, too, plagues me ...
I fully agree and very much appreciate this. Thank you.
I don't know how things are likely to go for her medically after this. I'm not a medical person. What I do know is that if it were my mom, I'd stop putting her through this and that and everything to keep her alive. I'd opt for hospice and let her go in peace. Listen to her medical team and ask them the questions that you're asking us. They are best qualified to advise you.
I'm very sorry you're going through this.
Thanks to all of you, I've accumulated a set of questions I can be more intentional (and empowered/brave) to ask. Forever grateful ...