Mom doesn't want tests done that doctor wants her to have? Her wish is to die. Do I just let her have her way?

Ladybug,
I really like someone's suggestion to tape your conversations with Mom.
If it's a videotape, even better--since voice tapes cannot be used as evidence, but videotapes can.
Then using those to have a discussion with your brother...he can hear and see what you do, that way.
Raven's last paragraph really makes much sense!

Raven,
Have you looked online to learn more about alternative methods of caring for gallstones? There are herbs and nutrients that do a pretty good job of helping the body off-load them, wihtout surgery.

OTH, if your Mom refuses to follow directions, that becomes an exercise in futility.
Gallbladder surgery is far less traumatic these days--usually they can go into tiny holes, instead of a huge incision, and the recuperation time is far less. The fear of it can make someone balk.

If she's having pain from gallstones, there's a chance it will keep acting up like that sometimes,
OR, it could go ballistic and the gallbladder could split open, spilling juices into the abdomen..
...that happened to a friend of ours...she got to the ER just in time.
But her problem got that bad because Docs at Kaiser kept telling her she was imagining things.

IF a person is used to chowing on carbohydrate/sugar foods, gallstones will keep being bad.
Adding fats to the diet with carbs, makes things real bad, can make flares of the muscle spasms as the gallbladder tries to squirt out enzymes to digest the fats.
Some have used simple, real apple cider vinegar [the cloudy stuff], about a Tablespoon with the meal, and that generally helps digest the fats, to help decrease the spasms of the gallbladder.
Others have used Epsom Salts, per package directions for laxative, or maybe cut that amount in half--that helps relax the muscles of the ducts, which can allow stones to pass, reducing tension in the gallbladder.
There are also Chinese herbs that can be used, and there are various fasting regimens that help get rid of the stones.

But it usually requires the person be able to cooperate in it...can't work if they can't participate properly.
Your Mom sounds pretty depressed. Maybvge that needs addressed.

Despite what many think, those in dementias /alzheimers DO know what's going on, to some extent. They don't like it, and want to do whatever they can to make it stop...even die. I've cared for people who make plenty attempts to get their wishes known, despite some pretty advanced dementias.

Consider: don't most healthier folks make statements like: "If I ever get to the point my mind is gone, and there's no quality of life, I don't want any life-preserving things done..."???
Those notions persist, well into dementias.

IF someone wants to go for comfort measures /palliative care, where she stops taking everything that keeps her alive--food water, meds, etc., and just get comfort measures---depending on how much a person weighs, and how hydrated they are, helps determine how long it takes them to die.
In Hospice, I cared for a woman who was rather obese, who chose this.
It took her about 2 weeks to finally die.
It was not pretty, nor was it comfortable, even though at least some nurses on duty did give pain meds and turn her....some didn't....those looked in the door, assumed "comatose", and walked to teh next patient.
It's HARD to choose to die, and hard to go through with it.

ladybug - in your profile, you have written that your mom is 84 and her primary condition is heart problems/stroke. You haven't posted any updates, so I'd like to comment in addition to my prior post.

Even if your mom wanted the testing, I am concerned that they would consider anesthetizing her for the colonoscopy procedure without ruling out other possibilities through less invasive measures.

I know you are dealing with a difficult situation but have you been able to find out any definitive information from prior blood tests or stool samples. It's possible that you already know but didn't mention it in your post. Are docs telling you that giving her a colonoscopy is the only option to diagnose her anemia or the only option REMAINING?

Hey, Captain - did you ever read humorist Erma Bombeck's "If Life Is Just A Bowl Of Cherries, Why Am I Always In The Pits?"

After reading several of your humorous posts, I had the idea that maybe you should write a book and am offering a possible title:

"Hell Boss: Smokin' & Tweetin' on the Final Highway to My Promised Land!"

One of my doctors years ago told me about "Pallative Care" where a patient is basically taken off all medications and treatments that keep them alive and allow them to die with some amount of dignity. She said more and more doctors were going in this direction because they had seen far too many elderly patients "shocked back to life" because the FAMILY could not stand losing grandma and they did this numerous times.

The thing is that I agree with my fellow writer that if your Mom is 66 (fairly young) then I would try to get her to at least have the tests, after all it may be nothing bad. If she is 92 then I can see her point that enough is enough and she may just want to call it quits. My father decided after 1 year of being ill and coughing all the time that he had it and was ready to die. We were not ready but he was and he was put on morphine and kept comfortable until he passed.

My Mom says she wants to die but a lot of her talk is the dementia as well because when you talk about her being hospitalized she goes back and forth between being glad for the help and just wanting to die. So when you have someone who flip flops it really makes it hard but if they are adamant that they do not want to go through testing or surgery then how can you make them?

I am faced with this exact dilemma now as Mom has a gallbladder problem. She has stones and has denied it for about 30 years and has had bouts of pain and discomfort. Now at 84 with a very bad bout, if a doctor cannot give her medication to just keep her comfortable, stop the pain, help with digestion, I do not know what we will be faced with because she will not want surgery and is probably too frail even if she did. This is a horrible time in her life at this age to have happen.

I have to say that I am learning from all this, that I better take better care of myself and quit putting off having my own medical ills.....

Rather than have a fight with your brother you both should try to sit quietly and discuss this and if necessary have Mom tell your brother what her wishes are, then you don't look like the bad guy in all this. Your Mom needs to realize that just because she refuses treatment it does not mean she will die quickly nor that it will be pain free so you need to discuss this with her as much as you can and maybe if brother is not around, hide a small tape recorder and record your conversation and send it to brother. You don't want to make him and enemy but Mom's wishes have to be considered, it is her life, her body.

Bottom line, any person, regardless of age, has the right to request, refuse or change their minds about, medical or other interventions.

Docs are required to tell people what mainstream medicine would advise for most average people in whatever the medical situation they are in.
...they =unfortunately= fail to tell people: "this is what is usually advised for people in this condition, but, other conditions your elder is experiencing may pose other pros and cons to doing that, like_______________".

The tricky bit is educating/informing, if at all possible, so they can make informed choices--or their POA needs to be informed to choose well.
The older or sicker a person gets, the more a person may experience difficulties having procedures and treatments--or it might be impossible to inform them.

I've cared for people who wanted every possible treatment and intervention, despite having terminal conditions. Mostly, they feared not getting those--feared not getting them might cause more pain, since Docs often play on that tactic to convince them to get more stuff done....even when it's a bald-faced lie.
--The other reason these folks may want everything possible done, is they have really great insurance, lots of money, and/or want to keep running their lives as long as possible--these fail to see that, at some point, all those interventions often result in less quality of life, and shorter life.

Sometimes, repeatedly getting treatment for some conditoins, really does result in extending a life significantly--one cousin lived about 30 years longer, by getting newer and newer treatments for her cancers. Then she simply chose to stop doing anymore treatments and let the cancer take her. But in that extra time, she had good quality of life...when it got to the final refusal, possible quality of life had diminished greatly.

The opposite: those who have been really sick with lots of issues, who just do not want to do any of it anymore--nothing has been working for some time, there's no new, known, more effectively treatments, so they sign up for hospice and request "comfort measures only"--and list exactly what those are for them.

There are many who firmly believed they would NEVER want anything done to prolong their lives if they got really sick or incapacitated...until they get there....then they suddenly fear their beliefs were wrong, or, that something might fix them up right, or, blood scares them and they want someone to make that blood stop---doubts and fears change their minds.
IF they ahve proper supportive people around them, they might find it easier to make hard choices.

But it's still up to them--hopefully, based on knowledge to make informed choices.

People need friends and/or family to be supportive of their choices.
Supporting someone who has made difficult choices, often flying in the face of conformity and OTHER's expectations, need all the loving, emotional and physical support they can get.

Fighting and struggling against the inevitable, makes the whole process more painful. But when we can be Unconditional in our loving, supportive care, it's then, we most often see that particular State of Grace take over, which can ease and heal broken hearts, and allow the person to more easily go through what they must.

@mrsdrlamar,
anywhere but kansas would indeed be a better place. well unless they died and went to appalacia. epidemic of crack zombies there. im going to hell. ive been promised cuban cigars, high speed internet, stuff to build a motorcycle and a token administration position. my mother will be allowed unlimited visitation rights. not a bad package all in all.

Yes, as stated previously, since my Mother now has dementia and is actually no longer able to make an informed decision, several years ago she did set up a Living Will as to what she wanted medically for end of life. So, if she refuses tests or medications or anything, I will honor it. Just give her tons of pain-relieving drugs if necessary.

The same as I hope would happen with me. After watching a friend die from a rare form of breast cancer, which she fought heartily for 3 year and her quality of life sucked so badly, I told another friend, if I were diagnosed with cancer at this age then 65 -- now 66 -- I would ask for pain drugs and then do all the things on my bucket list. Why? Because I'm going to die at some point, it cannot be prevented no matter how much we fear it or don't want it to happen and I am afraid of it happening because I'm a control freak and things I don't fully know. But also, because I've had a good life and why should they expend a lot of medical stuff on me, who has lived her life as she chose and it's been great. Instead expend that medical experience and service on young people who have not lived their lives. Plus, now I have a new reason. I do not want to go through what my used-to-be-strong/independent mother. I do not want dementia to creep up on me and then I am totally dependent on others. We cannot avoid death.

My friend knows how much I mean this. She with my one brother who does help me with Mother, is a trustee on my estate. She and my brother both know that if they don't respect my wishes I will haunt them for as long as I can after I do die. If necessary, I will move to Oregon or Washington, both legal assisted suicide states.

Actually, when my Dad was on home hospice and in his last 2 days in 1999, and I was living in a Lazy Boy chair in his room, I sat there thinking, if he were in more pain, I would have no problem giving him more morphine to help him end it all and would deal with the consequences afterward.

So, sorry for my rambling, but to sum it up, I think we need to respect our loved ones decisions. I know it is hard to face losing them, but it happens at some point and at some point, now or later, we all have to face it, maybe try to get your brother to face the fact that it will not hurt less if it is delayed. It will still hurt like hell.

If one pill would do it I think many would follow your intent to take it but its not that simple let alone available! Sigh.

I like what daughter52 said, I have been watching my dad get more and more frail and I keep telling my husband, if I get to that point, just give me a pill and put me out of my misery. What good is a pointless life? If I can't do the things I want to do I don't want to just be using up perfectly good air. When I was an X-ray tech I would watch the nurses call code blues on patients who had been unresponsive and in a fetal position for ten years. When I asked why they said, that is what the families want. I told my kids, I hope you never hate me that much. I made my peace with my parents years ago so that I would never have to feel regret for things unsaid or unresolved feelings. Of course I will be sad when they go but I will also rejoice that they are in a better place and I know that whether in physical bodies or not they will always be with me. Watch the Long Island Medium to get great peace of mind.

@Mrs. Dr. LaMar I have not been diagnosed with anything to date but I am like you, I will never take chemo !!!!! I would consider radiation (I can deal with being tired) but never chemo! I hope my LO's honor my wishes.

If your mother as dementia/Alzheimer's (which I believe someone eluded to) then she is not making any decision informed per se. Agreed, the prep for the colonoscopy is brutal even for us young folk; the procedure itself is painless (at least the one's I have had). The purpose of course is to remove polyops before they turn cancerous so its can be a beneficial preventative treatment. I'm due for mine but stalling. Grrrr.

for the last year of her life my mother refused curative medical treatments. its hard to fathom but im not 81 years old and tired and sick. she was never a dummy. she refused chemo treatment after a gross masectomy too, 34 friggin years ago. chemo was even more experimental and damaging then than it is now. whatever her rational i learned by reading that the recent discovery of a mass on one of her kidneys was indeed inoperable at her age. the removal of one kidney will destroy the other and thats if her heart would hold up to the anasthesia and major surgery, which it would not have. even with advanced dementia she made a damn sound decision. she died on her terms and it only makes me respect her more..

Beware of MD's who want to do intrusive procedures on the elderly. What is the point?

Oops - patti - I accidentally answered this question by posting to your wall, please go there to read that.

But as I reviewed everything here, I only see that your mom has anemia and the doctor wants to do a colonoscopy, is that right?

As has already been covered, colonoscopies are harsh. Even the virtual colonoscopy, which is more modest, still requires prior evacuation of the bowel, which includes laxatives and fasting on clear liquids. Not aw very comfortable scenario for an 84 year old woman with diabetes and other issues.

Has the doctor done a fecal smear to test for occult blood in the stool? Has she's been given blood tests to discover if the anemia is iron based, B vitamin based or actual blood loss. Does your mom take any blood thinners (coumadin, plavix) or NSAIDS (aspirin, ibuprofin, alleve, celebrex)?

If she doesn't want the testing, she could the given a transfusion that would make her feel better temporarily. Sometimes when a senior feels bad, they think they're going to die and they decide they are willing to. Other times, they may allow treatment when they feel better and aren't believing they're going to die anyway.

It is vital that your family has a medical guardian/power of attorney in place for your mom as the decisions get more and more difficult. I just went through this with my mom - 18 months of me making her decisions, even though she was pretty much capable of making them herself she still wanted me as a back-up person (and to emotionally support her decisions). We did hospice for 9 months...and there were many times we said NO to them wanting to give her morphine...my mom still wanted to have blood tests which we paid for out of pocket with a home health agency nurse. I always stood back and asked myself if the medical ideas (when she was still getting aggressive treatment with hospital visits, etc.) being suggested were going to hurt her quality of life, or if there was a chance she would get better. I am telling you all of this because there are so many "gray" areas. I always worked to respect what I thought my mom wanted...and sometimes she just needed the reassurance that things would be ok if she tried a new medication, etc. She died two weeks ago and I had to make final decisions about pain meds, which was really hard, but I knew it was time for her to be in quiet peace. I hope this helps with your question.

My case has similarities. It's come to the point that if Mother doesn't want to follow PCP & neurologist advise. AND continuously gripes when I and others 'harp' or 'pick at me' to follow those professionals' directives, then it comes to a point of let her do as she pleases. Informing Mother that she is the one to pay the price isn't necessarily totally true. Decisions she makes effect the family as a whole, though it's not understood by her. Dementia is, as most are, an unkind friend (foe) that is pledged to the demise of more elders each year. Though the diagnosis here was only given this year, Mother has been racing to the finish line. It's to the point for me that if she wants to continue this reckless course, so be it. That may sound harsh, but the reality is that she has made the decision. I will continue to offer as much support as possible, but will not, not continue in the vein of being a task master.

I agree that hospice is the way to go here. They are so experienced, and can be so helpful -- and working with them will allow you to "do something" to care for your mother while still respecting her wishes, which may placate your brother. The majority of hospice people are caring, experienced professionals with a wealth of compassion and resources to assist your mother, whatever she decides to do, even if it is helping her decide not to use hospice and get the treatment.

I can only echo what others have said here. If her quality of life has dropped it's understandable; if she is truly ill or in decline she may have decided it's time to give up or let go, and no amount of arguing from your brother will change that. Has she lost interest in life, misses friends, opportunities she used to have? My own mother is getting more that way; nothing seems to hold her interest anymore and she often seems to be just marking time. Once the desire to live is gone, it's difficult to find a reason to go on. Would a therapist be able to help her find reasons that life is still worthwhile?
If nothing else, she should be made comfortable while she's still alive. Jinx4740 makes the best point, much depends on your mother's health, if she's fragile or in pain her attitude is understandable. She may know what's best for herself, and that choice may not be what either of you want, I can't say. I only hope your brother doesn't put you down for standing by your mother, does he see her much?

What CureDementia said. Yes, if she wants to die, let her do it. But I totally understand your feelings in that you want to feel you've done everything you can and are letting her go without repercussions. Since there's no hope, no one should make them go on and their wishes should be first and foremost. Man, this is hard stuff.

Would a virtual colonscopy be available for your mom. That procedure involves swallowing a camera the size of a large pill capsule rather than using the colonoscope. The camera takes pictures of the GI as it travels through until it is expelled out the 'other end'. This procedure is less risky and uncomfortable because no sedation is needed and no 'tubing' is used. The gastroenterologist used this for my mom when she had anemia issues and it worked well for her. Of course, you have to make sure that your mom doesn't flush the capsule when it comes out 'other end.'

Your mother is not in this world to live up to your expectations, or your brother's. It is her body. The oncologist insisted the without chemo and radiation I would only live a year. In 2009 at age 55 I chose not to have any of that done. My husband respected my decision and I accepted no interference from any of my family. Now here it is 4.5 years later and I am still on the planet and other than a few age related complaints, I am healthy. When my MIL was told she was in kidney failure she, at 89, she refused to have anything done and we took her home, made her as comfortable as possible and enjoyed her final days with her. She died peacefully in our arms, surrounded by all her loved ones. Yes, we miss her terribly but I am so glad that we did not force her to succumb to our wishes. Make your peace with your mom in whatever way you need to and respect her wishes. God Bless

Things do get complicated when trying to do the "right thing" for your aging, ill parent. Like another commenter here said, you have to weigh the pros and cons of the treatment. I had a simpler situation but it still kind of applies in replies to your parents' right to refuse certain treatments. My mother needed minor surgery on her hand for her 'trigger finger'. She had been complaining repeatedly for almost a year that it was bothersome and painful. When I finally got her appointment and tentative surgery, she refused to do it. I didn't want to force her into it but knew that the issue would continue to be there if she didn't. Not life threatening, I know, but I had to confer with her primary physician to see if that surgery was safe for her and I was assured it was. I then had to have a discussion with my mother to allay her fears. Now when the day for the surgery comes, she may forget all about the conversation and try to refuse again. The point is that you do have to consider everything--whether it is safe, and whether the post surgical outcome is worse the the problem itself. Sometimes it may be just better to make them comfortable. I know I would like to have a say about my health care if it were me and I had a choice.

I also have a difficult brother who does not understand our parents' conditions or the issues a caregiver faces.If he doesn't want to get involved, except to criticize, then he is a detriment, not a help. Why can't inactive family members just leave well enough alone? Don't have the answer to this, nor do I know how to deal with it except to finally ignore the crude comments. Perhaps they are struggling with losing our parents too, but they just don't want or know how to be involved in ways that support the family. As long as we know, in our hearts and minds, that we are doing everything possible to keep our parents comfortable, and to carry out their wishes, the arm-chair quarterback comments really shouldn't matter. Stand up for yourself and your mom's rights and go forward. Sending an extra bundle of strength and courage.

Mom has the right to say "No"
The Dr has a duty to offer these tests. Of course everyone should have a colonoscopy every ten years starting at age 50. BUT there can be serious complications such as infection and piercing the colon thus allowing dangerous bacteria to enter the abdominal cavity. The benefit is early detection and treatment of colon cancer which is a major killer. Does she have rectal bleeding, if it is bright red it is probably hemorrhoids. If the stools are dark red or black the bleeding is higher and should be investigated but the patient still has the right to refuse. Bleeding in the gut can have many causes not related to cancer. The preparation is not pleasant and the procedure can be very uncomfortable if not painful if insufficient sedation is not used. Sedation is another big danger for the elderly. I will add that I have always refused a colostomy and will continue to do so for numerous health reasons but I probably would change my mind if there were indications of trouble and I was still generally healthy. As long as mom has the facts and fully understands the dangers please support her decision.

Although mom is 94, she doesn't want cataract surgery, dentall care, or hearing aids. Also refused skin cancer treatment & help ini the home. She's lucid, coherent & can make her own decision. Period. AS heartbreaking as it is for me as her only child (I've been by my parents side distance wise my entire life - very close to them)I've been respecting her decsions to refuse treatemt. They still take CBC & some other blood tests, & she's on portable oxygen, but really that's it. My point is your mother has the right to refuse treatment - but do make sure she understands the consequences of her refusal. My heart goes out to you & is with you.

Recommend contacting your local Hospice. They can help your mother make informed decisions. My father wanted to refuse all meds, until the Hospice nurse explained his options and the outcomes. He's now taking his meds. However, he does refuse invasive procedures and most medical tests. It's his right to make an informed decision. Thanks to Hospice, he did. Good luck with your mom, and take care of yourself too.

I had a showdown like this with my father. He had rectal bleeding, but wouldn't go to the hospital. I asked him if he wanted to lie there and bleed to death. He said yes, but changed his mind a few hours later. My father accepted the colonoscopy, but would have needed heart surgery before they could operate to remove the cancer, and chose, at age 85, not to be treated. His dying was not beautiful, but it wasn't a nightmare of surgery and chemo and lots of trips to the hospital.

I think the answer is that it depends. If Mom is 97 with dementia and is quite frail, then she is probably correct that there is no benefit to doing a colonoscopy - putting a camera up her butt. If Mom is 66 - my age - and is strong enough for general anesthesia, then finding and fixing a problem seems a lot more worthwhile.

Is the doctor sensitive to her age and condition in suggesting this? He is suggesting the treatment he would give to any patient, and may not be considering her condition. Lots of doctors don't know that much about the best treatment for frail elders. Consider getting a second opinion, and take her to a geriatrician.

Does your mother have a clear picture of the possible benefits of treatment? She may have a horror of having a colostomy bag, so she should know that that can be just a temporary part of treatment. Does she know that they might be able to cauterize a "bleeder" during the colonoscopy, leaving her "good to go?"

I can understand how your brother feels. No one wants Mom to die, but no one wants her to suffer through treatment that won't help anyway. He should talk to the doctor to understand the risks of the colonoscopy. If she is frail enough, she could possibly die, or the colon could get torn, resulting in terrible complications.

Ask if she could get B12 shots for the anemia, or blood transfusions to keep her feeling better without the risks of the colonoscopy. That type of treatment could satisfy everyone.

Getting more information may not be able to "cure" her, but it can help you to know that everyone is making a good decision based on the big picture, and what's best for her. God bless you all.

If Momma aint happy, no one be happy.

Seriously, your Mom has a right to say NO.