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?
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.
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))))))))
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.
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.'
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.
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.
@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 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.
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!
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.
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.
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.
I was advised that once they start with life-support it is difficult to reverse the decision. Have you spoken with Mom's physician? 75 is not old. You need to tell whoever is in charge that Mom didn't want any "heroic measures" when her time comes. You can refuse Dialysis! AND you can refuse a feeding tube.
I looked it up when my father went on Dialysis - you can stop that at any point in time and it takes about 2 weeks for the body to die. But it is painless; the body simply shuts down and the person goes to sleep and 'drowns' in it's own fluids.
So when the time came, I helped my father to refuse any more dialysis. At that point in time I also stopped all medications other than for pain and he passed peacefully after 5 days and he was still cognizant until the time of his passing.
Truth be told, it would hurt just as badly if you had pulled the plug and then continued to wonder "would she have recovered?"
So, going forward it is important right NOW, while her head is clear and if she is able to communicate, to get her signing away on POA, a will, and most importantly a living will with lots and lots of conversation with her about what she does and does not want as far as quality of life, life support, etc. I also suggest recording these conversations on your phone.
I am an ICU RN.
Our decision was that there was to be no resuscitation, she was simply to be kept as pain free and comfortable as possible. Treatment comprised oxygen and delivery of pain killers through a drip. Nothing more. Twelve hours later she began responding to physical stimuli and soon woke as good as could be expected for a 93 year old with advanced progressive dementia. Apart from being a little vaguer, there was no obvious residual damage. Since then we have gone through a similar scenario on another two occasions. While our mother might not be experiencing the physical pain of, say, cancer, the turmoil and emotional pain of dementia (she has at least 3 types) is excruciating for her most of the time.
In Australia we are going through extended debate about euthanasia, which you can imagine is passionate and, at times, quite confronting. Advocates only seem to use physical pain to illustrate their support for the legislation, and are horrified when patients overseas are using their own laws to end life for depression, a treatable mental illness. No one seems to consider the dementia patient in their argument. The disease seems to be up there with depression as just mental illness, rather than the insidious disease it is.
If patients are determined to use assisted dying laws to end their life at a time of their own choosing, they have to demonstrate they fully understand the implications of their decision. How can a person with advanced progressive dementia satsfy the medical profession that they know what they are doing? Our mother says she no longer wants to be alive, but at the same time says she does not want to die. Withholding treatment and not resusciating might not be in the same league as assisted dying or euthanasia, but it is equally as confronting, especially when we know what someones wishes were pre dementia. Our mother was certainly anti euthanasia, but we wondercif she would have been so adamant had she really known the horrible existence for which she was destined.
Thank goodness my siblings and I are on the same page. None of us feels any guilt with our decision which has been constant on three occasions. It would have been a calous act to deliberatley bring our mother back to the dark and emotionally painful place in which she continues to exist.
I hope our experience can help you to come to terms with your guilt, Squaatch. There is no right or wrong way to deal with the issue of withdrawing treatment, or continuing treatment despite someones previously stated and well known wishes, or against the best medical advice.
my mother is the opposite. She has a DNR but is terrified of death so always says she want resuscitation when they ask her. Right now her health is good for 93 except for vascular dementia and her Afib but she constantly complains about her lot in life( always has) . I hope the next stroke takes her out, if it makes her unable to talk or move around she’ll be completely miserable
I'm sorry for your burden of guilt and woe.
You made the best decision you could for your mother at that precarious time.
Please try to internalize that everything is not your responsibility, and you can't be expected to have all the answers or know the future.
Clearly you are decent and kind, or you'd not be feeling this way.
I wish you well.
R27
Her mind is clear - but a feeding tube - does it hinder her ability to talk? Has she expressed any desire to stop any of the support systems, does she still speak of goals for future, etc? Listen to her desires. You might also ask for a meeting with the doctor(s) to discuss long term prognosis and goals they foresee. All the tubes and stuff may appear bad to you, but the doctors may be able to explain things better.
You need to wrap your head around the fact that you did the best you could do at the time when she had the surgery. It is always easy to think of the what-ifs, but what-ifs are only afterthoughts. Most emergency medical decisions are made in the here and now with only the thought of saving a life in mind. You did what you could to save her life - the same she would have done for you.
Create and discuss an Advance Directive if you haven't already. It's true that decisions about transitioning to comfort and focusing on quality of life (which I prefer to the phrase "pulling the plug") are rarely black and white. Knowing what's important to your mom for an acceptable quality of life can help guide decisions when they need to be made.
A POLST form can help ensure that CPR would not be done in the future if that's what your mom wants. This should be part of the Advance Directive conversation and then involve the physician to clarify any questions about likelihood of a "successful" resuscitation in her current state of health. The physician also needs to sign the form as it is a medical order.
I think it's also important to keep in mind that "allowing natural death" by not intervening with aggressive measures is not the same as "aid in dying" (historically called assisted suicide) which allows a person who has full capacity to understand their decision to then choose to take something to hasten the dying process. Allowing natural death is simply letting nature take its course when the body is no longer able to sustain life on its own.
My best to you and your mom. She clearly has thoughtful and caring support from her family which is such a gift to her.
Maybe SHE had a decision point in that interim time, while she was on life support? Perhaps she made an informed decision ?
You know your Mom's wishes and being in certain possession of that information, with your brother and you in support of one another, and hopefully with your Mom able to participate, you will be able to make decisions.
HOWEVER, and this I think may be the REAL problem you are up against; this sounds like serious malpractice in a well patient in for a procedure, and is almost certainly a suit that would be taken in malpractice, as your Mom will need care the remainder of her life. My feeling is that you should see a GOOD malpractice attorney at once; not one of the ambulance chasing ad-producers, but one recommended by other lawyers you may know who specialize in other areas of the law.
I am so sorry for all you are going through.
Ask mom if she wants to complete Advanced Directives/Living Will
(which can include VERY specific details on what future heroic measures she wants---ours rules out feeding tubes and respirators.) She will decide what she wants. Make sure that her physicians, the local hospital, the facility she's in all get copies of those completed documents. Hospital or facility social workers can help you get the appropriate documents. Our state department of health also had standard forms on their website.
Also she should complete a Power of Attorney for Health Care, a HIPAA authorization to receive and discuss medical records with you, and a General Durable Power of Attorney (for finances) that has provisions for a successor to take over decisions if she becomes incompetent. My parent's doctors had to certify that they were no longer competent to make their own decisions to activate those documents, but that can take place within a matter of a day if the physicians are familiar with the situation. I carried a copy of these documents with me at all times when dealing with medical personnel. Whenever I met a new provider, a social worker, a nurse...I always announced that I have Health Care Power of Attorney and HIPAA authorization to receive medical information for my parents. Given that, I was not given the run around. The documents are usually drawn up by an attorney but your state department of health may have prototypes or you may find legal document prototypes on the internet. Medical providers sometimes have their own HIPAA form.
The physicians can also determine if your mom is in Medicare hospice status, where Medicare covers all medical bills and offers additional services. That was invaluable at the end of my dad's life. She may outlive the Medicare hospice order and that can be renewed multiple times.
Another document my dad signed in the hospital was a "DNR-Do not resuscitate order," after hearing from the hospitalist what realistically happens to elders when CPR is applied. He was issued a permanent plastic bracelet indicating a DNR order was in place (helpful if paramedics or ER involved.)
Consider having an attorney draw up a Revocable Living Trust," which is the vehicle that will hold any property transferred there. If you are named as Trustee and POA, these steps make financial transactions and decisions much easier in the future. Property not placed in a Revocable Living Trust or other trust will go through state probate court. However, if the mom does not have any significant property, a trust isn't necessary.