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Part 1: My mom's PCP ordered a Hemoccult test, which came back "Positive for Blood." The PCP wants her to go to a Gastroenterologist, for a Consult.


My sisters & I do not want her to go through the Colonoscopy prep (and pity the poor caregivers). If she were to have a cancerous polyp, it could be removed. But if it were a cancer that required surgery & chemo, we would decline. The PCP says we should at least see the Gastroenterologist, to see if there were other options.


Part 2: My mom is so good natured and her caregivers, in Memory Care love her. She has no health problems, other than her Vascular Dementia for 15 yrs. She did have a 2 day hospitalization for cellulitis, but that cleared up nicely.


I bring this all up, because we may be faced with other decisions. We know we will not resuscitate her, but how aggressive do we treat infections or diseases that require surgery?


Your opinions & advice are greatly appreciated. Bless you all.

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First, decline all tests that would not change your treatment choices. If you're not going to treat colon cancer, there's no reason to have a test to confirm it. Polyps take as much as a decade to develop into cancer, so I'm not sure I would worry much about them. If your mother is experiencing low blood count and the treatment is periodic infusions, knowing whether she is bleeding internally somewhere or just not making enough blood anymore doesn't change the treatment.

Second, carefully consider possible side effects and complications. The colonoscopy anesthesia could accelerate your mother's cognitive decline by a stage or two overnight. Seniors have more fragile colons and are more likely to experience a perforation. How likely is a complication? Make sure you look at the stats for someone your mother's age and relative health conditions, don't accept summary statistics consisting mostly of decades younger people with far better general health. If there was a complication, how well could your mother recover and what would be her state after healing?

Third, does treatment for the condition help your mother remain comfortable or just prolong her life? Even into advanced dementia I choose to treat my father's CHF fairly aggressively because withholding treatment would have been at least uncomfortable and likely very painful. We were approaching a difficult choice on dialysis when Dad died suddenly of a heart attack. If Dad had developed a cancer, only palliative care would have been chosen.

Fourth, there's the balancing act and acceptance of declines. When my mother fell in Sep 2018 at 86, she damaged her knee and needed surgery to have any chance to walk normally again; however, she was not a good candidate for the needed surgery with a high risk of complications (particularly infection) potentially leaving her with a joint even more damaged or maybe even requiring amputation above the knee. The fall was caused by Mom's spinal stenosis and the doctor felt she would need a walker even if the knee was perfect again and a wheelchair was definitely coming. Why take the surgical risks when the best possible outcome would not be much better? After natural healing and PT, Mom's knee has reduced range of motion but with a walker she is slowly on the move again without pain. She cannot lift the undamaged leg impacted by the spinal stenosis very far off the floor anymore, she drags/scoots it. We use a wheelchair when she leaves the house and Mom remains able to transfer with minimal assistance.

It was emotionally difficult to change the standard of care goal in my own mind from "complete healing" to "maintaining as best we can" for my mother who's cognitive issues still allow her to function well with support. But then I realized at some point in the aging process the goal has to switch whether dementia is in the picture or not. Without cognitive issues, the senior makes that decision for his/herself. When there's cognitive issues, particularly in the advanced stages, I believe it's entirely appropriate to switch to maintaining a comfortable life while allowing natural declines to continue without aggressive treatment. My mother was very clear over the years before her cognitive issues she did not want treatments to prolong life when there was little or no chance of recovery to a good quality of life. I'm going to honor her choice as best I can.
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XenaJada Dec 2019
EXCELLENT ANSWER!
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You know, the whole matter of 'medical intervention' for elders with dementia is maddening. My mother is 93 in January. She was taken off blood thinners because she was having SUCH HORRENDOUS nose bleeds that we kept going back & forth to the ER by ambulance. She was coughing up clots the size of oranges, I kid you not, and the doctors said NO MORE blood thinners. So off she went.

Now she may have a DVT in her leg. What's the treatment for DVTs? Blood thinners, of course. And LOTS of them, in high doses and even needles of Heperin in the stomach. Yay. So what do we do? Find out if she has a blood clot (she refused an ultrasound; she lives in Memory Care) and if she does, THEN what? Or, leave her alone to let nature take it's course?

Personally, I'm 100% for palliative care. Minimal medical intervention. Minimal medications. Minimal horsing around by doctors and specialists and minimal trips to hospitals, rehabs & ERs. She has dementia. She can't walk & is wheelchair bound. She has fallen 40x that we know of. She has chronic insomnia and complains 24/7. She has congestive heart failure & AFIB, She's had 2 bouts of full-fledged pneumonia, the last one in May which hospitalized her and put her in rehab, too. Damn near killed her. But she pulled through. Again.

Her money runs out in about 18 months so I'll have to apply for Medicaid to get her into a SNF with a roommate. She hates women with a vengeance (all people but especially women).

So...shall I take super-human, heroic measures to save her life? I don't think so. That may sound 'mean' to some who say things like Mother Should Easily Live to 100 and I Will Do Everything In My Power to Make it Happen!!

I won't. I will allow nature to take it's course, as people USED to do before modern medicine decided to keep people alive WELL past their expiration date, despite living in Memory Care, running out of money, suffering daily, having no idea WHAT the heck is going on, and having more issues than Newsweek.

Rant over. Spare your mother the colonoscopy, and spare yourself all the guilt trips that you'll likely put yourself on if you DON'T schedule the damn thing. Leave the poor soul alone and let nature take it's course. Draw the line HERE.

Good luck
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NeedHelpWithMom Dec 2019
I totally agree about palliative care. That’s what I would want for myself or anyone else.

Your mom is a cat with nine lives! She’s tough.

I can’t imagine a doctor even suggesting a colonoscopy for OP’s mom at her age. My mom would never consider any type of surgery in advanced years. I wouldn’t for myself either.

I agree with you, lealonnie. Just allow people to die with dignity. Let nature take it’s course.
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Thank you everyone for your answers & support.
To answer some of your questions, I am her financial and healthcare POA. My 2 sisters are supportive. Her PCP is a reputable & caring Geriatrician, whom I have known personally (through work) for 6 years. I assume she ordered the occult blood test for routine preventive care, as mom does not have anemia or other associated symptoms.
I haven't considered Palliative Care yet, as Mom is happy, healthy & gets around nicely with her walker. She only takes meds for low thyroid & mild diabetes. Her issues are dementia, incontinence & arthritis. I will look into Palliative Care, to get a better idea, when that would be appropriate.
As for the question, "would I want t live this way." As mom was losing her memory, it was terrible for all involved. As for now, she is so content, on no psych drugs at all. I know this is very unusual. She has had Vascular Dementia for more than 15 year, with a very slow decline.
Back to would I want to live this way? To be blunt, I hope I can choose to end my life, before it gets too bad. The problem is, that  I will be in denial until it is too late to remember to carry-out that plan! I wouldn't like to depend on others to feed me & wipe my butt, when I do not remember anything, except maybe 50+ years ago! Possibly more than that, I would hate spending the money that we worked so hard for, to pay outrageous amounts to keep me in memory care, and I do not want to live with my dear family and become their burden.

Thank you all for the great advice. I appreciate this forum very much,
Take time for yourself. Join a caregivers support group, or just go to lunch with a few other caregivers. I do and we share ideas & stories & we laugh a lot!
God Bless you all. Enjoy Christmas and the coming year.
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My SIL is a gastroenterologist and would say an adamant NO to a colonoscopy in a patient well into their 80's. The chance of a perforation is huge. He said anything they'd need to treat aggressively could be seen on ultrasound. TXing for colon cancer is brutal and most people in their 80's opt not to do it.
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I can not believe any doctor in their right mind would order a colonoscopy for a person with dementia at that age.
So..devils advocate here...
You do the colonoscopy...
Positive for cancer what will you do?
Surgery? Not a great idea given current condition.
No surgery? Then what is the point of putting someone through the test to begin with.
If you elect for surgery..how well will this person do with possible chemo, radiation? Has the cancer spread? How far will you go with surgery to "get it all"?

Personally and the decision I made for my Husband...NO colonoscopy.
His previous tests had been negative.
There was no way I was going to try to "prep" him for a colonoscopy, try to convince him he needed to drink all that stuff and then wait until it kicked in and try to keep him clean, not to mention everything else!

I would say no to any invasive testing, no to any tests that would result in a diagnosis that you are not going to follow through with a treatment.
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The doctors are always going to tell you they can do something. I have yet to meet a doctor who told us, when my MIL's neurodegenerative disease was speeding up, "there's nothing left to do". Medicare was their cash cow and her final 24 hours of life in the ICU cost almost $500,000. I knew she wasn't going to make it; even my husband, who has little interest in medical things, knew she wasn't going to make it. And yet the doctors talked my FIL into a Hail Mary therapy, which failed.

Focus on your mother's quality of life. I would not do the colonoscopy.
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I have a dual experience for you. My late MIL developed a tumor in her colon. It was cancer but had not spread yet it was blocking her ability to have bowel movements. She had surgery to have it removed but they were not successful and she ended up with a colostomy bag. This meant she would have to go to a nursing home leaving assisted living. She also could not remember she had the bag. My husband requested they do the surgery so that she would not have to have the bag. She suffered a massive stroke shortly after and passed within a few days. Sad as this was she was 90 and did not want to live in a nursing home this way.

Years later my mother who was in her early 80's had a colonoscopy for the first time. Many polyps were removed but one large one could not be removed this way and required surgery. She suffered alot of bleeding and passed out in her apartment while on the phone with my husband. She went to the hospital and subsequently entered AL. Some months later the polyp was removed successfully.

Bother of these mothers should have had colonoscopies before their 80's. In retrospect we should have been more adamant but they were living independent lives.

I do not think a colonoscopy should be done. I think as many other non invasive tests should be done to determine a hopeful possible solution. With our mothers histories my husband and I have had routine colonoscopies with good results. At some point though I think we will refuse them as they are difficult to deal with.






.
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My answer is twofold. Mom will be 90 next month and a lifelong hypochondriac. Seems every dr. we see sends her to a different specialist. We have recently added a dermatologist (no cancer) and a speech therapists because she coughs a lot and now insists she spits up her food. Then there are the intermittent headaches, eye floaters, ear pain, backache etc. I'm tired....this is taking way too much of my time and patience. Truth be told she does have health issues.....nothing extreme and considering her age, and mobility restrictions, she remains in decent health. I refused a colonoscopy and other tests because a fishing expedition is not on my agenda. She lives at home with dad and I am her ride and have POA. Any invasive procedure is off the list. At 90 if you look for issues you will find something.

Flip over to my grandmother who passed at 97. Never went to the dr. (waste of time). At 80 she fell and broke her hip. After routine blood labs the hospital wanted to run tests for diagnostic purposes. Her thoughts were that when her time was up, then she would leave this earth. No fuss, no bother. A loving strong willed woman who was devoted to family and passed peacefully in her sleep. My choice: I'll take Nana's way any day.
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lealonnie1 Dec 2019
Love it........a fishing expedition!! Might as well ask for 'exploratory surgery' to find something wrong, while we're at it!!! I wish more people could be like your Nana, God bless her. My mother says she wants to die daily, and has been threatening to do so (Jumping out the window, etc) since I was about 10............she's 93 next month & still going strong, though. My point is, she says she's wanting to die, yet asking for EVERY medication and EVERY treatment known to man!! THIS is someone who 'wants to die'? I don't think so. She has swollen feet and had to wait until Tuesday (from Saturday) to see the doc and said, "Great, I could be DEAD by then." Of course, she wasn't dead of swollen feet in 3 days time. Sigh
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If it doesn't bother you guys, I wouldn't consider surgery it could cause infections and could make things worse considering her age. I would let her live a good quality of life and you guys already see expected things because surgery is declined, so let her just be happy. Now if she has pain and discomfort surgery could be considered other than that, I would let her live her Best life Pain free and Happy.
Good Luck!
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I am so opposed to my mom having a colonoscopy, but she too, is scheduled for one in January. She's been complaining of pain, blood on the tissue paper and "something egg shaped" often coming out her rectum that she pushes back in. All three of her doctors are in agreement with the procedure and the GI promises that they will only use a mild anesthetic to address the dementia concern. He said it could be internal hemorrhoids, a prolapse or cancer..... My mom stated in the past that she absolutely will not use a colonoscopy bag or go through cancer therapy. We shall see - it's amazing what becomes important when faced with the prognosis of prolonged pain or death.

Yesterday she had a very bad day and it all stemmed from her rectal pain and issues including a lot of pain, overly emotional outbursts and even a couple of vivid dreams.

We are seeing her neurologist today and that's one of the concerns I'm going to address with him again, just to be sure.

I'm telling you all of this because I want you to be able to make clear decisions that are in the best interest of your mom. My mom is still at home and still has enough control of her facilities to make decisions on her own, but I don't know if that's the case with your mom. I guess my question is - is she in pain? That would be my gauge to decide what direction to go.
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kirahfaye Dec 2019
As a follow up for anyone interested, I discussed the procedure with her neurologist yesterday and he is in agreement with it, too. I wish there was another option, but as she woke up with pain again this morning, it appears we can't continue to ignore it any longer. Hydrocortisone cream only helps so much.
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