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.
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?
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?
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.
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.
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?
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.
I wish I had something to offer beyond sympathy.
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.
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.
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....
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.
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.
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.
Still, becoming paralyzed is not a normal complication of colon surgery. It sounds like there was extensive nerve damage done to your dad. The surgeon should be held accountable for this so that s/he doesn't do this to anyone else in the future.
Infections can also cause severe dementia. It's important to treat all infections, not just to reduce dementia, but also because infections are very painful, and painkillers are often insufficient to ease the pain.
The OP's father would certainly have died without the surgery. Probably not in much pain, in fact; he would have been given powerful pain relief, become septic very fast, fallen unconscious and passed away within days.
The question is, would that have been a worse outcome *for him* than what he is facing now?
Famously, an elderly gentleman was congratulated on his birthday and asked "so, how does it feel to get to ninety?" To which he drily replied: "better than the alternative."
The issue is that there are circumstances in which staying alive is *not* "better than the alternative." In all societies, deciding when that has become true for an individual is a complex ethical challenge. In some societies, even thinking the thought is taboo.
I echo what others have said: not sure how it works where you are, but getting medical power of attorney for your Dad and advanced directives are really helpful if possible at this stage, especially if he is saying things to you about wanting to end his condition. Trying to get him to state these wishes to others, witnessing, is also helpful.
I highly highly recommend the book someone mentioned, Being Mortal by Atul Gawande, for any of us facing these end of life situations, hopefully much in advance. It's written by an MD, a surgeon in fact, where he really gets at the over-medicalizing of death and how to have conversations with family and caregivers and medical providers about it. It may still be helpful for you for conversations coming up and even just for feeling better about holding your ground when needed.
My own recent experience with my Dad's decline over the past few years and acutely in the last few months of his life and dying were immensely helped by having read it and avoided things like putting a defibrillator into Dad who had end-stage of at least four other major diseases and was clearly ready to be done. My cousin, a 40-plus year cardiologist who recommended the book to me, said that even she, with all her clout, felt like other providers tried to pressure her into more care for her parents who had been very clear about their end of life decisions. She coached me to ask questions like: "will this (med/procedure/therapy) improve his overall degeneration" "what are some of the complications that might arise?" will this aid quality of life or not and how exactly? To say things like: "We're opting not to have that procedure at this time. He is really only interested in having comfort measures, no more interventions." Ultimately YOU are the closest one to your Dad and make decisions on his behalf if he is not able to. In essence you are serving as his hospice advisor.
I'm so sorry you don't have direct access to hospice services, it was such a huge help and they are very skilled in getting the other medical providers to back off with anything besides comfort measures, a real challenge in nursing homes where that is their normal course of treatment, with probably some concerns around their liability, and they may have their own conflicting feelings about letting people "go in their own way." Perhaps it's possible to get in touch with hospice directly online or by phone to see if they may be able to provide coaching/support/resources, even if not available where you are.
Best of luck to you and like everyone says: if he is safe where he is, take a break for yourself! Just rest, get with people who are fun and supportive, and attend to your own routines as much as possible. You don't have to feel guilty about that at all, you need to be clear to assist where you can and ultimately, you still have a life, are doing the best you can with integrity and things take their course.
May 19 is IBD day. Please everyone spread the awareness. There is so little understanding of IBD.
I'm Racing in Orange for the Crohn's and Colitis Foundation. You can donate at my Race In Orange page, which is on the Crohn's and Colitis Foundation's website.
online.ccfa.org/goto/JoyEllen
My Dad is 86 and suffers from bvFTD (Frontotemporal Dementia, behavioral variant), a heartbreaking disease. Seven years ago, when he was in the early stages, and before the bvFTD diagnosis, he had to have emergency surgery on his foot to remove an infected bone. His dementia and motor functions were significantly worse after the surgery, but he returned back to where he was after a few months. I later learned from the wonderful community at the FTD Support Forum that general anesthetic often causes a severe worsening of dementia, and that some patients return to baseline after six months, while others do not.
Since then, I have been able to steer clear of general anesthetic for him (thanks to an amazing heroic surgeon who removed a horrible fast-growing skin cancer using only local anesthetic), and deciding to forgo colonoscopies and surgery for small gallbladder stones. Skipping the colonoscopies was a tough decision, given that he had had several polyps removed before the FTD diagnosis, and I may come to regret it. Still, the thought of the anesthetic having a a good chance of severely worsening his dementia, possibly permanently -- yes, a hard decision. It was a relief his doctors agreed, but I still fear he might get colon cancer and end up like your poor father, when a simple polyp removal would have prevented that agony. I make sure he eats a healthy diet with plenty of fruits and vegetables and give him vitamins and supplements proven in clinical trials to reduce the risk of colon cancer, and can only hope for the best.
I don't want to give you false hope, but there is a chance your father may get better with time and after the infections are cleared up. Infections can cause delirium in the elderly, especially those with some form of dementia, but it goes away once the infection is cleared up.
Having said all that about doing my best to avoid general anesthetic for Dad, had I known at the time that Dad had FTD and the risks associated, I would still have gone ahead with the foot surgery. It was a life-or-death situation. Yes, in hindsight, I can know it was the right decision then as he returned to baseline dementia-wise after a few months, but what if he had not? Please stop beating yourself up over your father's surgery. You made the best decision you possibly could at the time, not being able to see into the future. Your father may or may not get better and have a better quality of life, but there is a chance he might. You have done a wonderful job of seeing your father is getting the best of care. He is Blessed to have such a good and loving daughter.
My angelic grandmother died in screaming agony of an impacted colon. Yes, she was given the maximum amount of painkiller, but to no avail. The surgeon told her children that yes, he could operate, but she would not survive the surgery with her weak heart and would die in the operating table, so they decided to spare her the surgery. Your choice was different, as your father could and did survive the surgery. Your choice was between a screaming death of agony and a possibly okay life for him. No, his life is not okay now, but you could not possibly have known that and it just might become okay yet, given time, or at least tolerable with moments of enjoyment of life.
Even if his condition does not improve, the general anesthetic simply "fast forwarded" his Parkinson's and he would have ended up as he is now, only later. The end stage of Parkinson's (or FTD or Alzheimer's) is never pretty but rather utterly heartbreaking, and my father will get there, too, surgery or no, sooner or later. Yours will have just got there sooner in the worst case. I do hope for the best case for your father, that he will get better, though. It is possible. Even if he does not, you will have done the best humanly possible. That is all any of us can do.
The surgery was carried out to remove an obstructed, maybe necrotic, bowel. Cancer this advanced will likely have had other impacts on the poor elderly gentleman; you are inferring from "he could walk" that the poor man was absolutely fine before the surgery, which is a bit of a stretch; and to assume that the devastation post-surgery was due to negligence rather than disease is far too great a leap.
And, by the way, for a person in his eighties an external colostomy bag can be an excruciatingly big deal. Clearing up the bathroom after him isn't exactly a fun way to spend the afternoon, either. Good for you for educating yourself about the possibility and taking a practical approach, I applaud that; but I wouldn't be so blasé on behalf of my frail, ill elders.
I will very happily support IBD Day this coming weekend and completely agree that far more research is needed into gut health, the role of the gut and the relationship between it and the rest of our physiology, all round.
I have learnt that in my country you can reject treatment for yourself, but you can not reject treatment for somebody else: somebody you are guardian of, your parents, your child etc.
Yesterday I went to see my dad. The nursing home is so far away. I have to pay USD 15 to get there and return which is a lot for me. My father was sleeping. I poked him a little but he did not wake up.
I saw that in stead of getting his food through PEG, he was getting it through IV. They told me that he had diarrhea because of the antibiotics. I am going to pay a lot of extra fees this month to the nursing home because of his infection treatment. Money is a concern too. So I am stressed about money also. This seems like a marathon and I don't know if I have the energy and recourses till the end.
Once again thank you all.
Just checking back in. How did your visit go with your dad? Did you find him continuing to improve from the infections? How were his eyes?
How is your mom today? Do you care for her in your home or does she live elsewhere? Do you work Missdenwo outside the home?
It was sobering to read that you are alone with your familial circumstances.
We here on Agingcare.com send you a collective hug and wish for you every comfort available.
We are all reminded that as much as we advance in science we are humbled in the end with the realities of life and the frailty of the human body. Sometimes it’s ours to bear witness. The path looms large.
When I read the following, I thought of your father and the age old realities of life. Sent to me in a text from a friend.
From my book - SAVED BY A POEM
“Very truly, I tell you, when you were younger, you used to fasten your own belt and go wherever you wished. But when you grow old, you will stretch out your hands, and someone else will fasten a belt around you and take you where you do not wish to go.” John 21:18
Have you had an opportunity, would it be possible, to get the surgeons to sit down with you and the operation records and explain in full anatomical detail exactly what was done, including a clear description of how invasive the cancer had been? They owe you that at least, surely. And seeing as your authority to make decisions on your father's behalf is so constrained under your country's law, they also have to explain how they came to their own clinical decision - whether to you or to anybody else reviewing your father's care.
Is there a formal complaints process you can use?