I am writing to vent. My father could walk before the surgery, now he is completely bedridden. He must be repositioned every two hours. He could eat before the surgery now he is fed via PEG. Also he has a colostomy bag. More than half of is mind is gone after the surgery. He mumbles, I don't understand 90%. The remaining 10% is cursing, expressing hallucinations and delusions. He still recognizes me but for some reason he is very angry with me. I guess I am the only one he can express his frustration. He is in a Nursing Home. This is the third one and finally, I have found a place that takes really good care of him. But he is a prisoner in a room. He is unable to socialize, mentally just not capable. Also since his discharge from the hospital about three months ago, he has been having infections. We have been testing his CRP. Now he has MRSA and another hospital infection in his lungs according to a sputum culture. He is being treated by the doctor of the NH and it is going well. CRP going down nicely. Vitals very good. When I look ahead I see years and years of suffering for my poor father and it really breaks my heart.
You are in a hard situation. I am so sorry as I know the anger you are getting from him. My dad too was and is still angry at me for his move to NH after he became wheelchair bound from a bad break in his femur. Sometimes it does help to take a few days off. My being there reminded him of why he was there.
Sadly surgeons only care about "fixing" problems. Not the after effects. Anesthesia can really mess with the brain of a person with dementia. My dad was the same. He did get better but it took several months.
Please keep sharing. We care.
That you're feeling frustrated is an understatement.
Doctor's have to perform the surgeries or face lawsuits for not performing them. It's truly a Catch-22. My heart and prayers go out to you and your family. This sounds like it was a no-win situation.
I think most cultures *do*, to an extent; but in those cultures which more actively venerate great age it must make the discussion even more delicate to embark on.
In my situation it would be really awkward and "fishy" to decline the antibiotics. Nobody does it and as I said before in my country these "end of life" issues need much improvement, and some conceptual discussions to begin with. We are not developed enough for these concepts but we are developed enough for good health care if you have some money. The doctor and the nurses at the NH facility are excellent. So they are using the most effective antibiotics.
Tomorrow I will visit my dad. He will curse me. And he has crazy eyes....
Even if the colon had not burst it would probably have obstructed causing terrible pain and death within a few days. The accompanying nausea and vomiting could have been controlled with medication as could the pain.
Now you are faced with a father who is almost in a vegetive state.His prognosis is still probably poor and under these circumstances if you had hospice available they would probably advise against continuing to treat the infections and discontinue the tube feedings. As long as you have the authority you can make these decisions yourself.
You would not be killing him just allowing nature to take it's course as would have happened in the days before modern medicine and doubtless occurrs today in many parts of the world.
With the frequent infections it probably won't be long before one is strong enough that the antibiotics can no long be of help and he will be able to pass peacefully.
Dad is the only person you seem to have in your world and of course you want him to live as long as possible but all he is doing now is existing so do what you can to ease his suffering. he is being well cared for so that is not a worry. Whatever you decide be at peace with that decision and don't let guilt be a part of it. People here really do understand and will be very supportive.
At first, in their house, then in a nursing home.
Dad passed away a age 93 in December, so now I have just mom in the nursing
home suffering from advanced Alzheimers.
Dad had a peg tube and suffered from many infections and late onset Parkinson's with mild dementia.
The challenges of managing both their care is stressful and it is sad to watch them decline. I wish I had answers for you.
I suggest you pat yourself on the back because you are an amazing daughter to do this
on your own. I have my sis and we hired a caregiver to help when we cared for both parents. You can come here to vent.
I'm very grateful for the advice and support I've received from my friends on this site.
I wish I had something to offer beyond sympathy.
97yroldmom:There is no one to help me. Here I am. The only child without siblings, divorced, without children. Mom is like a 3 years old , has Alzheimer's. She is another story. I tried physical therapy for dad for a month, it was like torture. He had no sense of motion in his legs. Even the therapist said there was no benefit in going on. Dad is in pretty bad shape.
Countrymouse: You are absolutely right about informed consent.
Of course I am not a doctor but I observe my father very closely, I personally don't have any hope for improvement. He has absolutely no sense of motion in his legs and some parts of upper body. Basically he can just move his arms a little.
My father and mother were always in denial about getting old and sick. They said general things like, they didn't want to suffer... But I am pretty sure dad wouldn't want this. A few days ago, among super crazy things he told me , he said he was dying, and he would get rid of his "condition"...
In my country there is no concept of "hospice". There is not as much choice for an individual for end of life issues as in USA.
If it is any small consolation at all, you have provided a very sobering example of how a surgeon ought to explain the risks and benefits of surgery in terms of quality of life, and how they often focus too narrowly on the specific problem the surgery aims to treat.
As you say, so sadly, your father has been "cured." Also, his life has been trashed - but it's almost as though that's supposed to be just some kind of afterthought compared to the "success."
20:20 hindsight being so wonderful, but in fact mainly for the benefit of anybody else who might in future need to make the kind of decision you were faced with, the discussion should have covered two, mirror questions:
1. What happens if we do the surgery?
2. What happens if we don't do the surgery?
I think you have every right, actually, to be pretty angry with the surgeon. He did not address your father's quality of life, did he? So, when it came to the informed consent issue, I think you were short-changed.
It may be that if you were given the choice between your father dying imminently of complications of cancer, or your father being left severely impaired by surgery, you would still have gone for the surgery. Nobody likes to think they're "letting" their parent die. But you weren't offered the choice. You were just told what to pick.
But no matter how legitimate the grievance might be it still won't help your father. Three months since the surgery, and he's having a bumpy ride. Two options spring to mind.
One, discussing what - assuming your father can be got over the infections - might be done to improve your father's quality of life over the next, say, six to nine months. Is it realistic to hope that with time and perseverance he may yet improve?
Two, asking wider questions about whether, as well as how, to treat. Did your father ever give you any guidance about advance directives, or his preferences when it came to end of life issues?
Any one of his problems would be devastating. You’ve done a good job to find him the care he needs.
Do you have anyone helping you?
Allow yourself a moment of respite from his care. Pace yourself. He may actually rest better when you are away for a bit since he is trying to communicate with you and it’s stressful to both of you.
Many who are affected by anesthesia do get better after awhile. Some do not.
Is he able to do any therapy? I know he is being turned but is he receiving visits from a therapist?
It will take time to adjust to this new status in his condition.
Do come here often to vent. We care.
Pick up the book “Being Mortal, Medicine and What Really Matters in The End” by A Gawande. It might help a bit.
Don’t ignore your depression. Try to walk. Eat healthy. Drink plenty of water. Get rest. Pace yourself. Your brain is overloaded. Your heart is broken. You have reason to be depressed. This time comes to all of us in one form or another. You’ve been given a difficult path. Breath deep. We are here for you.
CTTN55: I guess he had to have the surgery because the surgeon told me (after the surgery) that the colon was about the "burst". But I am still angry about the after effects of the surgery. I have problem accepting the situation.
I know I have to accept but I have difficult accepting. I am depressed.
In retrospect, there was probably a frailty assessment that should have been done, and he might not have had the surgery. I suspect the colon cancer was slow-growing, but who knows?
Were you and your dad apprised of the risks of general anesthesia before the surgery? Did no one tell you he'd have a colostomy bag?
Has dad been seen by a doctor who specializes in dementia? Do they think that his mental state is a function of "being under" and will clear? Are they thinking there was dementia pre-surg and it's worsened? Or did he possibly have a stroke during surgery?
Have any psych meds been tried to help with his agitation?