My mom went in for a routine heart catheter last month. There were major complications, a dissection of the artery, to be specific. After emergency double bypass, the prognosis was grim. My brothers and I, as next of kin, were prepared to "pull the plug" so to speak. She was on full life support immediately after. We were prepared for her to die, and I know she wouldn't have wanted to be on life support. We were told to be patient, we don't need to decide in the first couple of days.
Our immediate concerns were her cognitive function. But then, she started to wake up on the third day. She was nodding, squeezing fingers, etc. At that point, even though she was still on life support, it seemed that ending it wouldn't be right.
Long story short, after a week of intubation and 4 weeks in the ICU, she moved to a long term acute care hospital. Her mind is clear and memory fine. But many physical problems are present, including dialysis, critical illness myopathy/neuropathy, inability to swallow (feeding tube). She hasn't been on her feet yet. The doctors are hopeful she will regain kidney function, ability to move more, swallow, etc. but it is still early to know.
I feel guilty because I'm afraid her quality of life is going to be very poor here on out. I know she's just starting therapy/rehab, but I'm not very hopeful. She hasn't expressed any anger at us, but she's frustrated.
I feel guilty because I think she would have rather died than go through this. And we had that chance. She is 75 and was very active and healthy before this. I always thought pulling the plug would be more of a black and white decision, e.g. "brain dead." I guess not. How do I reconcile this? Perhaps in time, and second guessing does no good. Anyone else experience something like this?
Your mom sounds like a fighter, so I bet she will work to improve her situation. She is not done with her rehab yet or healing. She has a long way to go. Be greatful she is there and you have her. Dont worry about second guessing yourself. Move foward from where you are right now, and be greatful that you have her. Say all those things nice you want to tell her, because if she is gone you cant.
From what I understand, if I had done those things "properly" I would have then felt guilt about something else. The psyche often looks for things to feel guilty about .
I think in this case had you stopped life support, you may have later felt guilty about that. Not that you should have felt guilty then either, but based on what I understand, people in our positions often unconsciously look to feel guilty. I don't know, maybe its a coping mechanism.
After my mother suffered an ischemic stroke, there was an opportunity to administer an injection, which could have extended her life or killed her. I said no to the injection as she was 94 and there was a greater chance that it would have killed her. I came to terms with that decision as POA and don't hold any guilt.
The gal who came in, just said to crush morphine pills and slide it in her cheeks.. She forgot the ATivan... It was not fun ....
Angel.. that's my name for him... came in the early am, and got the ativan onboard, and got her angled so she wasn't choking/gasping/struggling... God, Thank you for your Angels !!!!
It really takes someone special, to know how to take care, and prepare someone for their final breath before death..
NOthing you can do will be right or wrong.. just know you loved her AND SHE KNOWS THAT...You need to forgive yourself and she has already done to you. She forgives you.. she knows you were trying to do the right thing.. doctors have the control sometimes...
DNR the right to die is so important, and we don't talk about it that much.. too deadlly... I suppose...
I have one already... not 60 yet,,, but the time will come.. my family knows what I want... not to be a burden... If I am not capable...do not plug me in... but do know that I need the hospice cocktail...at end of life...
I am ok... death is ok... A close friend told me that.. I finally get it.. Death is OK...
It happens..
I was away when LO had an issue.. I did not have POLST copy above the bed...
I do now.. I never go out of town.. and the one weekend I did... something happened... I left family to get home anyway they could... I took the car and drove...
Yes, we're still going through the doubts and second-guessing -- two years later! My husband had a severe stroke 2 years ago this month at age 72. The neurosurgeon indicated that he would not recover functions and would succumb to pneumonia or sepsis within a year, so was giving us the option of stopping the treatments that kept him alive the first two weeks in ICU. The palliative care doctor gave a more balanced prognosis, along with more positive possible scenarios. (Try to find a "palliative care doctor" or at least a chaplain!) I just had to give him the chance for some recovery and some semblance of a satisfying-enough life, but I am still wondering what would have been best. It sounds like your mom has a much better prognosis!
We hoped the feeding tube could be removed at some point. The speech therapist called his eating attempts "recreational eating" which made me mad -- I wanted them to help get him to the point of "nutritional eating." But they were right. Although he can safely swallow with careful supervision, the brain damage prevents him from wanting more than a few bites, if that. All the doctors and the chaplain assured us that it would be ethical and legal to remove the PEG at any time in the future since it is keeping him alive artificially. However, I hope I never have to make that decision again.
He also has expressive aphasia, with unreliable yes and no nods and occasional words that are hard to interpret. We had never completed advance directives. (He had only told me previously that he never wanted to be in a condition where he had to use a urinal, but I couldn't take that seriously! Now he wears diapers.) Be sure to discuss with your mom what she would and would not want to live with, with the caveat that when the time comes she may very well change her mind, and you may again have to use your judgement.
I never expected this status quo to go on so long; I thought he would get much better or worse in the first year. He's basically not eating, walking or talking, and sleeps a lot. But for now, as long as he is medically stable and shows momentary enjoyment, it's still one day at a time.
I think you made the right decision. I hope your mom continues to improve, and has many satisfying years to come. But if not, at least you have given her a chance. My heart goes out to you.
She has told my brother and I that we should have "let her go." I was expecting to hear this. She doesn't seem to dwell on it and is actually pretty upbeat and in good spirits most of the time. She seems focused on getting better, and she is (yes, painfully slow it seems, but day by day.)
She is very sharp minded and quick witted. The nurses love her. To be clear, I'm glad she's still with us. I just hope she has a quality of life worth living. It's too early to know yet.
As someone who is ADAMANT that I’m not to be kept alive if it’s likely I’ll be on life support for good, my perspective is clear: If I can think and speak perfectly upon coming off of support and there is hope that I can recover my basic functions — give me a chance at life because I’ll fight my way back. But if my mind will be shot — if I can’t speak, have brain damage, or am otherwise no longer what makes me “ME”— pull the damn plug and overdose me on something just to make sure I go. To me, your mom’s condition, at least the way you describe it, is much closer to the first situation than the latter.
So for whatever it’s worth — I think you made the RIGHT decision this time.