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.
The radiologist shouted at her, “Do you want to live?!” when she declined the radiology treatments. This is the ‘racket’ that’s called medical care here.
I’m pretty well through with these ‘Doctor Gods’. When you’ve worked in the belly of the beast you know the tricks.
I’m very sorry for the condition your dad was left in. The entire medical system gets worse every day or doesn’t try to improve anything. Quite a few elders in my family have literally been done in by ‘treatments’.
Subduedjoy: It sounds like you are really on top of your disease -- I am so sad you have it all, of course. IBD and UC are cruel diseases and incredibly, er, not fun! I really admire your attitude and strength -- inspirational!
My brother has UC and one of my closest friends since high school has suffered from IBD these many years. I was re-ordering the butyrate for Dad this morning and saw those reviews from IBD patients and thought of you, so felt compelled to share. I give it to Dad to help eradicate H. Pylori, and when I saw those reviews, I realized it might have something to with why Dad's "sudden pooping episodes" (diarrhea down the legs, into the shoes, all over the floor, etc.) had significantly decreased after starting the butyrate. So I went into to PubMed and saw the research behind it. He's had this problem ever since being on antibiotics so long for the infection in his foot. I tried everything, including prebiotics/probiotics, etc., with no success, but maybe the butyrate has helped, and if so, I'm most grateful! I hoped it might help you, too, and sorry it did not, but glad you have found some things that do.
Laurellel, thanks for asking. Inflammatory bowel disease is a complicated disease with many causes, so there are many things that might help. Yes, I take a lot of supplements and have tried butyrate. I find that supplements (even probiotics, digestive enzymes, and anti-inflammatories) all help a little bit, some more than others, but they haven't helped that much. For me, diet, fecal transplantation (FMT), and Flagyl have had the best results, most likely because I probably have ulcerative colitis from having been on antibiotics for many years. Doctors used to give them out like candy.
I do find it interesting that while antibiotics gave me this disease, Flagyl put one of my flares into remission. What has hurt me has also helped me.
My dad in NH. My mom lives in her home with a caregiver. This arrangement is very expensive for me. I am very stressed about money also!!!
Anyway...
I must say that colostomy bags are the least problematic issue at the moment. In my opinion they are better than changing diapers and it is much cleaner and the genital area does not get irritated.
My father's CRP fell to 13 from 76. The doctor from the NH says he will continue to improve as they have found the right antibiotics. Still I am very sorry for dad. So sorry that my heart aches.
My mom has Alzheimer's. She is like a 3 year old. But, she can walk, eat... She goes out to take a walk with her caregiver. I don't feel so sorry for her.
About the "botched" operation of my father. I didn't pursue any complaints because.
-first of all I am really tired, I don't have the energy
-it is extremely hard to prove medical wrongdoing (if the doctors did not amputate the wrong arm, like something very obvious)
-all doctors protect each other
-my father is old and everybody can use that as an excuse
So here I am telling the story to you dear caregivers, trying to relax a bit. (In stead of making a formal complaint.)
I send my best wishes to all of you
Yes, low blood pressure is to be expected because the colon is responsible for absorbing water and electrolytes (among other things). If the colon isn't functioning, then it won't be absorbing water and electrolytes, and blood pressure will fall.
Yes, antibiotics can cause diarrhea. The feces should also be more watery before entering the colon. So if there's no colon, then the feces will tend to be more watery.
I guess a bag is no big deal for those who have IBD, like me, because:
When I have colon flareups, I
am bleeding like I have a heavy period every day for more than a year; only, the blood is coming out my butt.
am having brown liquid diarrhea coming out of my butt for six months to over a year.
am going to the bathroom 30-40 times a day because I can't hold anything in.
am having to do mesalamine and steroid enemas every day as instructed by my GI's.
...
And I guess cleaning a bag is also no big deal because:
When I have colon flareups, I
am getting the toilet covered with blood and brown liquid diarrhea because that's just the way it comes out.
am not always making it to the toilet, which is only 10 feet away from my bed, so sometimes the brown liquid and blood will just run down my legs to the floor before I even get to the bathroom.
There are many Youtube videos showing what it's like to have a bag.
It was a botched surgery.
It's far easier to change a colostomy bag than to change a diaper. It's less messy too. There are Youtube videos showing the process.
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?
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
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.
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.
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.
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
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.
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.
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.