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.
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.
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.
🙏
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.
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.