Hello!
My 89 year old mother is in Memory Care and she most likely has metastatic lung cancer. She has moderate dementia. Cancer diagnosis pending biopsy. We would not persue aggressive treatment , We are in favor of keeping her from knowing her diagnosis as she has always been an anxious person and we dont want her last days on earth in mental distress about the cancer. Has anyone had an experience with dementia and cancer and what are your thoughts about telling or not telling a person they have it. I will also get some professional advice but it would be nice to hear personal experiences. Thank you!
I think you should guess what your mom would have wanted, if she had a clear mind. Would she have preferred to know, no matter what? I’m the type who prefers to know, no matter what.
From a legal perspective:
The laws now state that if death is imminent due to illness, the patient has a right to know the diagnosis, because they might want to say bye to certain people, or get their affairs in order one last time.
People with dementia don't really have the concept of getting their affairs in order. Do they?
With her moderate dementia if you told her would she remember the next day or week?
I disagree with Venting if telling her will create anxiety and stress. Why would you do that to a person?
Adding I am for not doing treatment for cancer on someone with dementia.
I do see what you mean. I think these things are so personal, as in case by case. Like my mom would prefer to know no matter what. But for sure, not everyone is like that.
Regarding the legal perspective, I’ve had doctors tell me, that if imminent, the law is clear: they have a right to know; the doctor has a duty to tell the patient the diagnosis.
Many years ago in some parts of the world, if it would upset the patient, doctors would keep the diagnosis secret from the patient. But laws have changed. Now a patient has the right to say bye and get their affairs in order.
Don't put mom through a biopsy if you aren't going to pursue treatment. Get palliative care for her and then hospice.
As far as getting her affairs in order, everyone should be (financial, legal etc.) because no one knows when their time will be….her mom may outlive many of us who still think we might live forever.
I am now trying to figure out what to say to her before going to do the biopsy. Maybe I could tell her they saw a spot on her lung and want to check it for infection...and then never talk about the results with the hope the with time she forgets about the biopsy. Any suggestions?
You know best. Follow your gut. As I said, for me, it would be about guessing what you think your mom would want. And if you guess she would rather not know, then definitely follow her wishes.
(((Hug)))
Yes, you can ask about the law. Some doctors will take the law literally, and tell the diagnosis. Definitely speak with her doctor. I’m sure the doctor will follow what you think is best.
Does she generally forget things you've talked about?
If your mother was a heavy smoker as my grandmother was (though she'd quit several years before), odds are excellent she has cancer. I think the doctor is being ridiculous even suggesting she might NOT have it.
I, too, would skip the biopsy. What kind of treatment would you do even if it wasn't cancer? Surgery? No. So, why do a biopsy?
Sometimes the opinions of others simply adds to confusion. Go with what your gut tells you here. I trust your love for your Mom and your knowledge of who she is and what she would prefer.
In general, and as an RN all my life, I don't believe in hiding diagnosis. I would simply say a spot was seem on her lung and in 6 months doctor would like another scan (which in truth will tell it all). Many people get lung cancer today without having smoked a single cigarette; so grandmother can take "guilt off her plate" with this one.
I am sorry for this probable diagnosis, but agree that treatment will not add to the quality of her life.As a breast cancer survivor (so far) there are worse ways to go than cancer with good hospice medication.. Dementia and ALS for instances.
It is highly unusual today for people to hide diagnosis from patients "for their own good" and my fear is that someone somewhere WILL let the cat out of the bag. You will them be blamed for hiding things from grandmom. I personally would not hide a diagnosis such as this. But as I said, you know your Mom best.
This is one thing I hated about Caregiving. Having to make decisions for someone else.
You say she is an anxious person...no need light that fire by telling her something she can't really process or do anything about. Hospice can make her comfortable as things progress.
Why would you tell her something that will be highly upsetting. Then she will forget, and you would have to tell her over and over again?
What's the point of her knowing this information?
Just keep her happy in her last days. Play her favorite music. Give her cute little gifts and items that she might enjoy. Do her nails and make-up. Give her JOY in her last days.
I agree with others statements - if she is an anxious person telling her is not going to help her. Blessings to you and yours
The doctors wanted me to tell her but I can't see any good reasons to, I want to help my mum have as much quality of life that she can. Who would gain anything from telling her
1. If I tell her, will she comprehend and remember? Depending on the stage of her dementia she most likely will not.
2. Will it create more anxiety for her and myself when she doesn't remember and or asks same things over and over ?
3. What will give her the best "quality of life" in the time left ? What defined " quality of life for her" when she was well ? How can " quality of life " be best provided for her now?
4. If you decide not to tell her, will you be at peace with yourself?
5. Also if you decide not to tell her, will ALL of the family and STAFF honor your decision and not try to go behind your back and tell her?
6. Hospice should be a good support for both her and you / family going forward which ever way you decide about telling her about the cancer.
Be sure that you access their chaplain and social worker team members for ongoing support with you and the family as well as of course your mother. Be sure all of the hospice team will honor your decision.
Practice good self care!
I forgot to mention, his regular doctor wanted him to get a pace maker after his heart failure diagnosis which my family and I refused to do. He wouldn't have survived the surgery.
Other people chimed in with ridiculous ideas. A friend's family thought she needed to change her diet to organic. The cancer had already eaten up a good bit of her body by that time, and no food was going to help, only chemo, which didn't have a chance of working and didn't.
It's really not necessary to broadcast others' health care info. It's no one else's business and opens you up to a bunch of worthless opinions that do nothing but stir things up at a difficult time.
https://www.webmd.com/lung/lung-biopsy-what-to-expect
Once you read this, you'll see that no lung biopsy is a good idea for an 89 yo, even those that don't require general anesthesia.
And no, no mention of the C word should be made to mom at all.
Best of luck.
Switch your mindset to palliative and/or hospice type of care for the rest of her life. I wouldn't want to know. And I wouldn't want to spend my remaining time being shuttled to the doctor for tests and/or treatments. It's stressful and unnecessary, IMHO.
Best of luck.