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My MIL has dementia (lewy body/mixed). She lives in an AL. She has reached the point that when anything goes off routine she loses it for about a week. They forgot to help her shower last Saturday, she went completely hysterical until Thursday. Calling random people to try to “break out”, leaving my husband and I hysterical messages, etc.. Yesterday, she called me but didn’t know she called (she does this a lot) but then started talking like a little girl on the phone. It was very disturbing. She also has a history of breast cancer. She went through chemotherapy about 3 years ago and it was almost too much for her physically. She is back to annual screening. It’s time for her mammogram and I just don’t can’t imagine putting her through it. I can’t imagine what a false positive or a real positive would do to her mentally. I really can’t imagine her going through chemo again. Two weeks ago I took her to meet with a Neurologist, she thought she was at a Therapist the entire time. She has an EEG and CT coming up with them. I am fine with the CT scan, but I am also wondering about the EEG. I notice when her disease progresses it a big step down, then she is steady for awhile. We have definitely taken a step down recently. Thoughts on when to stop routine screening and how much to put a dementia patient through?

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Sounds like the time to stop the mammograms is now. If she had cancer with dementia would you put her through chemo again? If the answer is no then there is no point in putting her through the screenings.

We are conditioned to want to fight and do everything we can to stop death but in cases like your MILs she is never going to get better. If she lives long enough she will eventually lose the ability to swallow.

Shame on the doctor who is advising you to take her in for a mammogram knowing her condition.
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I would not proceed, she has a very serious disease of both the mind and the body.

Lewy Body is one of the worst, why torture the poor woman any more than necessary?

I think I would look for a new doctor, I cannot believe that one would recommend this.

Today it is all about money, no longer what is best for the patient.

Sending support your way!
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Geaton777 Feb 2023
The doctors take an oath to "do no harm" and it's not up to them to decide whether a patient accepts or rejects recommended treatment. They just offer up the options for treatment -- that's their job. It's up to the patients to decide. This is when you ask the doc what they would do if they were in your situation.
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I would not bother with a mammogram
I also would not do any testing where she would have to be sedated. Sedation can cause a decline.
I honestly would discontinue most "routine" testing.
When my Husband became non compliant at the dentist I stopped routine dental exams/cleanings.
Honestly at this point I would transition her from AL to Memory Care and contact a Hospice and let Hospice be her Medical Team.
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Your profile says your Mom is 79 yrs old (not that age is the only determinant for testing/treatment).

I agree with the others that I would pass on any future testing. It's more important that her depression/hysteria/anxiety be improved since her cognitive disease prevents her from being able to do this on her own.
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Why keep putting her through all these tests, when all they do is bring her and you unnecessary stress? I mean really.
Lewy Body dementia is one of the most aggressive forms of dementia with a life expectancy of 5-7 years, so to me it seems quite pointless to keep hauling her for this test and that test. Let the poor woman live the last little bit of her life in some kind of peace.
Instead I would be moving her to a memory care facility, and when appropriate bring hospice on board.
And quit scheduling these useless doctors appointments. There's nothing any of them can do to stop the progression or reversal of dementia. I don't mean to be so blunt but your MIL is dying, and there is no happy ending with dementia(other than they no longer have to suffer with it),so please just let her live whatever time she has left in peace and comfort.
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What is the point of doing a mammogram?

Would she go through with cancer treatment at her age? Many people would not at her age. Plus, she is already dealing with a serious disease.

I would not allow her to participate in further testing, mammograms, bone density tests, etc. In other words, anything that is unnecessary.

Best wishes to you.
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Bighouse, you mention that your mother-in-law is living in Assisted Living. I believe it would be better for her to move to Memory Care, if the facility offers that option. The Staff in Memory Care have specialized training for all things dementia.

As for the mammogram, my Mom was in her 90's, very early dementia, and still insisting on having mammograms which her GYN tried to discourage. Mom won, she would get her test.... [sigh]. It was a waste of time, energy, stress and comfort because no surgeon would do surgery if the mammogram had a positive showing.
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https://www.cancer.net/blog/2018-03/mammograms-and-older-women-it-ever-safe-stop
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No point in it, and what if she freaks out during the mammogram because she has no idea what they're doing to her? I'm really sorry this is happening to her and to you. There's a time when palliative care or hospice is called for, but also, we as caregivers can head in the direction of palliative care on our own before it is even brought up by the doctors. That includes researching and realizing our choices and refusing things that cause them pain if in our or LO's judgment, that pain isn't necessary. Tough calls sometimes, but no one ever said caregiving was easy.
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At this point, I would not put her thru one. Mammo's can cause pain. I found with my Mom even checking her blood pressure made her scream out. I stopped my Moms. I stopped her urologist too who was still scoping her after 5 years of being bladder cancer free. She was over 85 with Dementia.

Actually, I read that women are given too many mammos and its effecting the thyroid. They want me to have one every year because my sister had breast cancer. No other history in the family. My GYN felt my sister's is not hereditary but caused by my sisters lifestyle. Stressful job, eating habits and overly obese.
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NeedHelpWithMom Feb 2023
We are all asked about family history of breast cancer. Don’t some people do genetic testing to see if they are predisposed for breast cancer?

My mom’s best friend had breast cancer when she was young. She had her breasts removed and thankfully it never returned. She had four daughters. Three of them did get breast cancer.

I hope a cure will be found. A lot of women beat their cancer and sadly some don’t.
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I can answer on a personal status.
I had breast cancer over 35 years ago. I had found all my own lumps both benign and malignant even when mammograms were negative (A-OK). At age 70, having become sick of calcifications and biopsy threats, I stopped all mammograms after a talk with my doctor. I continue to do self exam on the remaining breast. Now, at age 80 that is where I am. A personal choice. My reasoning is:
1. We will all die of something. At 80 while I might accept a mastectomy I would not treat any other way and would not treat advanced cancer, but would enter hospice. There are MANY deaths much worse than going of cancer, and as an RN I know which ones they are.
2. I found my own lumps. I actually trust myself more than the machines.
3. The false negatives are frightening and disturbing.
4. I have decided I am happily ready to live with the results of my own decision for myself.
Now, if MIL cannot discuss her choices with you, this decision fall to the POA. I, were I POA for my mother, would make the same decision I did for myself.
Just know whatever decision you make you do live with the consequences of it, both the good and the bad.
Best luck. More difficult to make this decision for others than for ourselves.
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Just because the medical technology is there doesn't mean you're required to make use of it.

After a two-week hospital/rehab stint that made my poor mother crazy with delirium, I made the decision that we were done with hospitals. (We'd already been done with specialists for a while.) What could be treated in place at her MC was treated, and what couldn't be wouldn't have. I put Mom on hospice, and she plugged along for another eight months, including bouts with Covid and gout that were treated in place.

Medical technology is just Man getting the way of Nature. At some point, it's OK to just let Nature take the lead without interference. Nature always wins anyway.
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Taking any life prolonging measures with an Elder diagnosed with dementia is an act of cruelty, imo. Leave your mil alone to live her best life now, unbothered by tests and poking and prodding.
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Caregiverstress Feb 2023
I agree. No tests, no treatments. Keeping them comfortable and pain free is the goal and letting them pass is the kindest thing you can do for them.
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My mom is 79 with dementia too. I don't do much medically for mom anymore. I keep her on her meds and supplements. Not trying to do anymore appointments that will treat anything new. I just feel like it is time to let nature take it's course and just focus on things that will keep her comfortable.

So, NO I would not take her for a mammogram. It would likely be too stressful and getting her to follow the directions, etc.
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I wouldn’t be worried about that. My grandma had Alzheimer’s and they found a cancerous lump but don’t treat it. I think there is enough going on with just the dementia so that cancer isn’t even anything to worry about. They are already dealing with a terminal condition.
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Why would you or your mother's doctors even consider sending her for a mammogram?
If she flips out for a week because the shower schedule was disrupted, imagine what she's do if you forced her to do a mammogram?
If it turns out she has cancer, my guess is you're not going to force her into treatment for it.
She has dementia and it will get worse. Clearly it's pretty advanced now if she's trying to get people to 'break her out' of the AL and has regressed to talking in the little girl voice. Clearly she's out of it and will likely need a higher level of memory care than an AL provides.
What matters is her quality of life. If she can have some level of contentment and is doing okay, leave her to it. No invasive screenings or testing.
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No more medical tests or treatments. Antibiotics for an infection maybe, unless she is so far gone that the kindest thing would be to not treat it and let her go. She is terminal. It’s too much for her now and would be unfair. The goal now is to keep her comfortable and pain free and that’s it. Those are my two cents.
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The oncologist thought it was best to NOT do a biopsy on the lump in my mom's neck, because her Alzheimer's caused her to not be cognizant enough to withstand it.

And, even if it was malignant, would we really want to put her through an aggressive treatment?

Our loved-ones have Dementia, which is a fatal disease. Why would we want to try to prolong their life?
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When my mother got to the point with advanced dementia where she was not understanding instructions (or was not able to follow them) at the eye doctor, in the hospital, and after an excruciating session at the dentist, after a discussion with her primary care physician we decided to switch her to hospice-type care, where the objective was just to keep her as comfortable as possible. We weren't going to aggressively try to fix anything. This was in line with her advance medical directives. And it seemed not right to put her through the discomfort of tests and cures. Basically her health was good, except for the dementia. Operations take their toll, especially the anesthesia, and especially on older people. My mother lasted 3+ years getting only her annual physical exam that was required to stay in her senior facility. She was much happier not having her routine being disturbed by being sent to the hospital every time she fell, and not having to go for 3 and 6 month checkups with several different doctors and dentists.
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While in the process of MRI/CAT scans prior to her Kyphoplasty in 2017, it was discovered that she has several masses on her ovaries. I decided at the time to leave them alone - no biopsy, no treatment. She's still here and in good health for her age. The masses don't bother her - she is in no pain and she doesn't even know about them.

At this point, she has no diagnostic or preventive tests. I do intend to keep her out of pain if any develops, but otherwise I'm letting nature take its course
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dkiely33 Feb 2023
Confirmed masses with no biopsy? Aren't you worried about ovarian cancer? The cure rate with ovarian cancer is pretty low when treated in the later stages. Is she aware of this or are you dictating everything?
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I'm very sorry to learn you are going through this situation with your MIL. The time to stop mammograms for her is now, instead of additional trauma she may face.
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I would stop any and all screenings that upset her. It’s just not worth her getting out of sorts for that long after something like that. Tell her Drs that you feel screenings like that are no longer necessary because of the stress it puts on her.
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However, after an older woman is treated for breast cancer, it is less clear when mammography can safely stop as women age. Follow-up care guidelines for breast cancer survivors from the American Society of Clinical Oncology (ASCO) and American Cancer Society recommend that women have a mammogram on any intact breast every year. The goal of these mammograms is to find cancer that comes back in the affected breast, called a recurrence, or to detect a new breast cancer in either breast that may occur over time.
However, there are questions about how long breast cancer survivors should continue to receive mammograms if they are older than 75 or if other medical conditions may shorten their lives. Older patients have not been well represented in breast cancer research, and this has led to recommendations that are applied to all women with breast cancer. Because these guidelines have not addressed older women specifically, they often continue having these tests as a habit, without much discussion about the risks and benefits of mammograms.
But in 2021, mammography guidelines for breast cancer survivors age 75 and older were published. These guidelines were developed by a panel of U.S. experts and recommend having discussions with women about their breast cancer history and treatment, their other medical history and concerns, the benefits and harms of mammography, and their personal preferences. The guidelines offer general guidance for the following:
Stop mammography for breast cancer survivors age 75 and older if they are expected to live less than 5 years.
Consider stopping mammography for breast cancer survivors age 75 and older who are expected to live between 5 and 10 years. 
Continue mammography for breast cancer survivors age 75 and older who are expected to live more than 10 years.
Most women will benefit from mammograms for many years after they are diagnosed with breast cancer. But there are also women who will not benefit as much and can consider stopping mammograms. Stopping mammograms does not mean that women will not continue to receive proper care, follow-up with their providers, or physical examinations, but it does mean that mammograms may not lead to better outcomes for certain women. These guidelines are meant to serve as a support tool for clinicians and patients to promote shared decision-making, acknowledging that mammograms will not provide indefinite improvements in longevity and do have downsides.
In addition to the guideline recommendations above, here are 2 situations in which a woman might want to stop having mammograms.
Matilda
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I truly feel sorry for you. What a decision!

Is your Mom going to a geriatric doctor? If so, what is her prognosis for the dementia? Are you okay with it if she dies of breast cancer instead of dementia? I'm not sure I could get my Mom to stay still for any imaging without drugs. We can no longer do dental xrays because she cannot keep her head still.

The last time I took my Mom to get a blood test, she had such poor circulation that they had to poke her in 4 different places, and they were barely able to get 1/2 of a vial. She had significant bruising in all 4 areas. She didn't remember how she got the bruising. I pledged to myself that I would never do that to her again under those circumstances.

Does your Mom have moments when she is somewhat rational? If so, what is her opinion?
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Bighouse: I will provide the history of preventative tests for my late sister in law. Even before she was dx'd with Alzheimer's, she failed to get routine preventative tests such as mammography, colonoscopy and the like. Her family DID make sure that she got at least the mammogram after diagnosis. Bighouse, routine is key for your MIL with Lewy Body dementia. Perhaps you will deem the mammogram too onerous.
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If you would not do the treatment, don't do the test.
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I stopped doing routine testing like mammograms and routine testing like that years ago for mom. I asked myself if they were to find cancer, would I put her through a surgery, radiation and or chemo and the answer was no, I wouldn't. Not only would she not handle it well, but she would not want to prolong her life with dementia.

Everyone feels differently about this topic. I know there are folks that want to prolong their lives no matter what their quality of life is, but my mom is not one of those people....on a vent, bed ridden, feeding tubes, no sense of reality...my mom wouldn't want that.

Do you know how your mom felt about the topic when she was in her right mind?
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JoAnn29 Feb 2023
My Mom had it all written in her Medical directive. My daughter had asked her too what she wanted andvdidn't want.
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You will probably not do anything even if she has cancer again. No reason to put her though it.
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I had a similar experience with my Mother in law a number of years ago. We made the decision to put her on palliative care. This is based on knowing dementia will get worse, so no longer pursuing tests, surgeries, making her DNR. It’s allowing nature to take its course out of a horrible process. Wishing you the best.
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My dad has colon cancer, he is 94. There will be no surgery, chemo or radiation. He also has heart failure, kidney problems and mild cognitive impairment. We will keep him comfortable and pain free.
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