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?
He was not feeling well, the doctors kept saying it was his diabetes, I didn't concur, he fell out of bed one night, off to the ER he went. Testing showed that he had small cell carcinoma of the lungs, the doctor showed me his ex-rays, it was evident that he was not going to live. I asked the doctor "How long do you think he has, be totally honest" he said "Well, if we do chemo & radiation maybe a year". I just laughed at him and said "Surely you gest".
I instructed the team to not poke and prod him any more, that same day I went to the ladies room and lo and behold they were taking blood from him...I went nuts..threw them all out of the room.
My father died 3 days after the diagnosis. With the information at hand, I believe that I made the best decision for him, that is all we can do...nothing more, don't guilt yourself, it is over, the result cannot be changed.
Sending support your way.
There is a document called a POLST and it is VERY specific as to the measures that are to be taken if necessary.
Discuss with her when she wants to discontinue dialysis, tube feeding and any other measure that is to be taken.
Don't feel guilty it is a waste of emotion. And part of this is the Doctors fault..they do not want to admit "failure" and a death is a failure.
Get POA established, if not already. Do this while she is cognizant; otherwise it will be a court-appointed guardian. Also get the estate in order. Discuss advanced directives and if she is cognizant have her sign one. Does she have a Will? Consider per-arranged funeral. Also get her bank account shared with POA as she may not be able to manage her affairs later. All of this is to avoid probate after she dies. See an eldercare attorney, and do this as fast as possible.
After my mother, then my sister died w/i 1.5 years of each other, Dad threw himself into his work at home, eventually collapsing and ending up in ICU. He had to be intubated, was trached and remained so for about another 6 months. He went through 2 bouts of MRSA, then VRSA, was in an induced coma for about 3 weeks.
A pulmonary doctor and an ICU nurse emphatically stated he would not survive. I knew my father had a will to live; that's just his nature. So I mustered the troops, made sure he had visitors, including me, studied up on all the conditions he had, and made sure to discuss issues with the positive doctors.
Eventually he went from ICU to the general floor to a long term care hospital, devolved when he got MRSA again, back to the general floor (or maybe ICU - I don't remember), up to a new long term care hospital, then rehab, then home with me at my sister's house.
We had home rehab; best and most professional service I've ever had. By then he had been decannulated but still was dysphagic, and had nothing but liquid nutrition fed through a PEG tube.
He did become discouraged; I used music and exercise therapy and again encouraged his friends from church to visit. The PEG tube was removed about 3 months after he came home (at my sister's house), in large part b/c I was politely aggressive and supported the issue of speech therapy, including through (Shaker) exercises.
His famous last words at that point were that he wanted a Big Mac! Junk food, but after 10 months of nothing but liquids, I thought he was entitled to something he really wanted.
While together at my sister's house, we worked on projects - assembling kit furniture, walking, visiting, etc.
He still had some issues, and eventually a CVA and stroke, but he always came back, lived several more years, and just passed last year, 6 months short of 100 years of age.
It CAN be done; the issues are so much the medical situations, positive outlook, family and friend's support, and good care.
I don't discard any of the advice you've been given; I just wanted to share that with determination, a lot is possible. And my father had determination. I suspect your mother has as well, so I'd focus on mental and emotional stimulation and integrating previous activities into her life so it's not all focused on medical issues. And don't forget her favorite music.
Pets help as well; they're great therapy.
I extend to you my best wishes and support for this challenging venture, and hope that you turn the regrets into cherished memories and pride of what can be accomplished.
Bon chance!
I didn't, but I did think about it. He lived another year or so--I just remember how painful it was b/c I wanted him to be taken home....I just didn't know how I could do this......in the end, with Hospice, I would cry as I gave him as much morphine as he could swallow.
He did die peacefully, but not after suffering so much.
I feel your pain and your guilt. We just don't know what to do....I hope your mother has a return to health that is good for her..if that is what she wants.
My heart aches for anyone who has to go through this.
@Squatch, you and your brothers were in a tough spot. There's almost always another treatment, another shot at saving a patient's life. It can be very hard to know when to say "enough".
Your mother is blessed to have loving children. I hope that you can let go of guilt and find peace.
I would always feel as though that person, that human being, would have deserved it’s say.
Someone whom I dearly loved was “allowed” to accept a “death with dignity”. I was denied access to the person, and didn’t realize until some time after the death had taken place, that I might have been able to provide a positive resource to allow the person to decide differently than a legal guardian had decided.
I feel guilty that I allowed that person to be separated from me. In fact, the guilt is terrible. The one gift that came from the loss is my now very firm sense that if the mind desires to be present, it should be allowed it’s time of dwelling in the body.
In light of my experience, you did no wrong.
In my case, I kept a beloved Aunt, who was my second mother, alive when looking back on it, I should have let her go. It was my first experience with the death of a family member. If I had it to do over, I would have let her go and I would have held her hand all that night. All any of us can do is what we can at the time.
Please don't feel guilty. If you believe in life after death, remember she is somewhere else and you will see her again. If you don't believe in life after death, her suffering is over.
She spend years taking care of my Dad who had dementia. He died a little over a year ago and I feel like Mom was finally coming out of that fog and being herself again. Then this. It's a bad deal.
Peace to all.
Try to stay hopeful... mom will need you to be positive and brave for her because I'm sure she's scared as she adjusts to the 'new normal.'
Now, if God is ready for her to join Him soon, she will pass. Nothing you do or don't do will prevent that from happening (I believe). So let the chips fall where they may. You have given your mother another chance at life. See how it all plays out.
Wishing you all the best.
Please don't beat yourself up and done the "woulda, coulda, shoulda" over this. You took the best advise offered by the docs; THEY are the experts, not you guys.
My mom was always adamant about not wanting to live past her expiration date. She had a stroke and broke a hip and ended up in a NH. She seemed content. Then, suddenly, she needed a pacemaker.
I was fairly certain that she wouldn't have wanted to live like this, if she'd had to make the decision when she was 70. But now she was nearly 90 and she had appointed all three of us "kids" as medical proxies.
Brother, who was financial POA, decided to ask mom whether she wanted the pacemaker and after a couple of minutes thought she said "yes, yes, do it".
I was pretty shocked. The desire to live in the moment is very strong.
Please, be at peace with your very painful decision. I hope mom recovers enough for you to have a meaningful conversation about these issues.
((((((Hugs))))))))
My mom had not been taking proper care of herself. A kidney infection turned into sepsis which led to a heart attack and an extremely long hospital stay. The first week was touch and go. At one point the doctor called and said we should all gather. We thought it was going to be the end. But then she pulled through and after a six week stay in hospital and another six week stay in a rehab facility followed by a trial home health care period she eventually ended up being transitioned into a nursing home.
At one point during her hospital stay she had said she wished to die. And it wasn't till her death a year later that going through her personal effects I found her living will which had stated her wishes regarding end of life care. If I had only looked at it during that first stay at the hospital I would have probably advised the doctors to just let her go. I know my mom's last year of life she was quite depressed and I feel I let her down.
Which leads me to say to everyone, make sure that you have all your affairs in order so that your final wishes are known to your immediate family.