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?
A week after my husband received a reminder to come in for a colonoscopy from his gastroenterologist we went in for his routine appointment with his neurologist.
While there I asked him what he thought about it. As we all know that would mean putting my husband through taking an enema, drinking that horrid potion, and dealing with the resulting mess and discomfort for several hours.
In reply the neurologist looked at me with that for-pity's-sake look and said don't put him through that. He wouldn't understand.
I wouldn't want a mammogram. It's still too primitive and painful a device even for a clear thinking lady to endure.
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?
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?
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
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
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?
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.
So, NO I would not take her for a mammogram. It would likely be too stressful and getting her to follow the directions, etc.
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.
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.
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.
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.
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.
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.
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.
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.