Treatment VS Life Quality

Kaustin1741

Hello!

My MIL moved in with us 8 months ago and seems to be progressing/declining with dementia quickly. She has been having various issues and symptoms which the primary care doctor has been diligent about trying to find causes and treatments. Due to all the tests coming back with no answers I just decided today to look into the list of medications she is on, and one prescribed by her oncologist in particular. MIL has had cancer 3 times with an abnormal BRCA gene. After her last chemo treatment the doc switched her to Lynparza in an attempt to keep the cancer at bay. This treatment change also coinsided with MIL moving in with us and me taking over her care and medications. In looking through the list of extended side effects MIL has 10 that are on the list. Things that have prompted the primary care doc to do this test or that with no results. (which because of her dementia it is difficult to get her to willingly do any test) I think she might be more comfortable if she wasn't on the Lynparza and we are going to discuss it with the oncologist. But, it is supposed to be the treatment preventing her cancer from getting worse. How do you balance treating another disease that is taking a toll, with trying to make her most comfortable due to the fact that she has dementia? Is it poor care to take her off the Lynparza if it means more cancer? If her dementia is progressing so quickly should we even be trying to treat the cancer? She doesn't understand the correlation or cause and effect of things. Everything is in the moment, I'm hurting and it needs to be fixed. If I told her the medication was causing these symptoms she wouldn't want to take it. But then if I tell her the medication is treating the cancer she would want to take it. Not sure, at what point do you stop treating and just let it progress?

dayn2nite2

I think the majority of people here would tell you it's better to die sooner of cancer than to keep on with treatments and testing and deal with dementia to its bitter end.  Either way ends up the same.

You know her better, what would she want?  FYI did the oncologist mention that dementia can often bring out an underlying dementia or make it worse?

Kaustin1741

Given that she also refuses to acknowledge that she has dementia because "that is just not her" , I know the prospect of living longer with dementia if she could think about it rationally is not one that she would want. But, she has had cancer before and I think on some basic level she thinks if you have cancer then you treat cancer. I questioned weather treating it the last time was a good idea, but she and the FIL decided it was what they wanted to do and that was a year and a half ago and here we are.

dayn2nite2

Also, I mistyped above, did the oncologist mention that CHEMO can cause or bring to the surface dementia?

star26

The oncologist may be able to suggest a different medication that might not be as effective but comes with less side effects. That would be a good middle ground and a completely reasonable and good decision, in my opinion. Even without dementia, when someone presents with lots of side effects to a medication, quality of life vs quantity needs to be considered and this is probably a conversation the oncologist has had many times. He/She may be able to present you with information on how much this medication could be helping and what could or could not happen if she stopped taking it or switched meds. It probably is not as cut and dry as "no cancer vs. the cancer comes back" and hearing the real facts or even the "we don't really know for sure" could make the answer more clear for you, or make you feel better about what your gut is telling you. At age 85+ with moderate dementia, I chose quality of life over quantity when making health decisions for my Dad. I had conversations like the above with his doctors so that I had all the facts and felt like I had made a well thought out decision. For what it's worth, once my Dad had dementia he wanted treatment for everything including feeding tubes, machines, etc. This was completely contrary to everything he said to everyone before dementia, including what he put in writing. And it was clear it was the dementia keeping him from being able to make these kinds of decisions. Good for you for likely identifying the source of her recent complaints. If it comes down to just stopping this med with no replacement in order to make her feel better and facing whatever may come, I agree with doing that for the same reasons Dayn2nite stated.

Marta

Hi.  The side effects of Lynparza are relatively mild, compared to other chemo agents. 

What issues is your MIL having, and can they be dealt with?  For example, nausea and vomiting can be treated effectively with meds. 

Kaustin1741

Hi Marta, 

While most of the side effects are considered mild I feel like the dementia makes her reaction to them worse. The most concerning side effects are lung issues, shortness of breath and coughing led her primary care doctor to do tests on her lungs and heart which look okay. Weather it’s the drugs or she is just so out of shape that she gets shortness of breath after walking a short distance I  don’t know. The oncologist said we can stop the medication to see if that helps knowing that may mean cancer coming  back, or it won’t. 

Iris L.

Read Hard Choices for Loving People.    It used to be available online in pdf, but you can purchase a copy.  It talks about this issue.

Iris L.

Jane Smith

Hi Kaustin, and sorry to hear about your mother-in-law. 

It’s always hard enough to care for someone with dementia and other health conditions, and obviously her recurrent cancer and cancer treatment would be bad enough with the dementia.  There are often not clear cut decisions and it can be so difficult to make those for someone else. 

I think you’re asking good questions about quality of life.  I wish I knew the answers, but minimizing pain and distress and prioritizing quality of life, over quantity, are a good place to start. 

I also recommend Hard Choices for Loving People by Hank Dunn.  For a longer read, you might consider Being Mortal by Atul Gawande. 

I wonder if there might be one or more of her doctors you have a good relationship with (oncologist, primary care, neurologist), who would be open to a frank discussion, without your MIL present, about what the treatment options are and what they entail, and also more information on the medications and their likely side effects/interactions.   Perhaps a different  cancer treatment/management approach would be worth considering, if it would fit better with managing her dementia symptoms. 

I can only imagine how challenging this must be for you and your family and wish you all the best.

Jane Smith

Oh, and also just FYI, she may not be “refusing to acknowledge the dementia,” but rather unable to understand she has dementia, because of the brain damage it has caused. It’s called anosognosia:  they cannot grasp the concept.  It’s different from willful denial, but can look just the same.  Not helpful, I know. 

Another quick read that might be helpful is Understanding the Dementia Experience,  by Jennifer Ghent-Fuller.

(=Meow=)

Balancing various conditions has to be the worst part of taking care of sick people as life seems determined to enforce it's "everything comes at a price" rule.

There is no quality of life if someone is in pain, or violently ill.  My mother has/had spinal stenosis, the surguries were not as effective as anyone hoped so she's still in constant pain, the medications used to treat the pain, such as opioids,  are the worst things to give dementia patients.  In her case they don't work very well so my decision was easy. 

Dementia is difficult, some forms of cancer are downright horrific, both lead to death, but some deaths are better than others.