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?

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I don't think you had much of a choice here, really. You're damned if you do and damned if you don't, if you think about it. If you had pulled the plug, you'd have been feeling guilty about 'doing it too soon.' Now that you waited, you're guilty for having 'waited too long'. See what I mean? End of life decisions are dreadful, no matter WHAT!! You did what you thought was right and you were acting in your mother's best interest; no malice was involved.

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.
Helpful Answer (21)
Reply to lealonnie1

Oh, Squatch; this is so hard.

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.

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Reply to BarbBrooklyn

Yes Squatch.

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.
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Reply to Gershun

So hard to know what to do. I agree with everyone else who posted. Just want to let you know that we care and understand that it’s near impossible for you to know what to do in these circumstances. Hugs!
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Reply to NeedHelpWithMom

Thanks all. I think we were waiting for a "sign," whether that be good or bad. But we didn't get one. Maybe her waking up was a sign. We were so focused on neurological function, at least I didn't realize all these other physical things would occur. My worst fear was her laying in a nursing home for years. I looks as if that has a good chance of coming true. Time will tell.

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.
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Reply to Squatch33

My sweet daddy had Parkinson's. He tried twice to take his own life. The second time, mother called ME although they lived with brother. I sat and held my dad's hand as he wept and begged ME to 'take him out of this misery'.

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 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.
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Reply to Midkid58
Squatch33 Dec 17, 2019
That is awful; I'm sorry you had to go through that. Thanks for sharing.
Just want you gently remind you that no one can know an outcome for certain. 75 is young in my family and I think I would have made the same decision as you, were it my own mother who at that age was incredibly active and healthy, too. From your info she seems to be making progress, very tiny progress, but progress nonetheless. Time will tell...please try not to feel guilty. May you receive peace in your heart no matter what happens.
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Reply to Geaton777

Author Katy Butler, a former medical reporter for the SF Chronicle, wrote about spending weeks as an observer in an major medical center's ICU. She said that years passed before she realized she had witnessed an acceleration in the erasure of that "once bright line" between living and dying.

@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.
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Reply to TXGirl82

Please talk to someone about how you're feeling... surely the hospital has a social worker on staff, or a pastor or chaplain from the area that does hospital visits. Talking to an objective stranger who has seen others go through the same thing can be enormously liberating. You saw signs of life in mom so naturally you assumed the best. I'm sure most people would have done the same.

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.'
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Reply to TekkieChikk

My father died at age 84, he had never been in the hospital before as he was born at home.

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.
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Reply to DollyMe

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