What can I expect for my Mom

stoneman133 · June 19

Hello All,

My Mom was diagnosed with Alzheimer's a few years back and has been getting worse. She was just diagnosed with lung cancer and we are looking into treatments/options to take.

So my dilemma is, what is quality of life in the up coming few years? Any thoughts on how long till she is unable to care for herself, or recognize people around her?

Current state: (sorry, I am sure this is repetitive to everyone here)
Does not recognize close family most of the time
She is still living alone (will need to get in home help)
She thinks I am her husband when I'm around
She forgets she has cancer before leaving the doctor's office
Thinks she has taken her medication even when she has not
Lays on the couch all day
Refuses to join any clubs/groups to interact with others

I know there is no correct answer, but I would not want to put her through all the cancer treatments to just sit in the corner not knowing where she is or who is with her a few months later if cured of cancer. (sorry if that sounded a bit cold)

My heart goes out to all of you dealing with this!

sandwichone123 · June 19

Often with cancers the treatment is worse than the disease. The only reason people tolerate it is because of the good days ahead, which doesn't sound like the case for her. I would reach out to hospice for evaluation. They are not a last resort, but rather a support for people for whom seeking a cure is no longer a goal. The support of hospice can make the rest of life much more tolerable for patients and caregivers alike.

Emily 123 · June 19

Hello,

That's not cold at all. You're trying to make a quality of life decision for your mom when she can't tell you what she'd want.

From what you're saying your mother can't recognize people around her currently, and her quality of life is poor. She is unable to manage her medications, and is unlikely to understand/recall that she has cancer.

If it were me, I would discuss hospice with her care provider and begin looking for a hospice company to assist with her care, meaning that the cancer would take it's course.

https://www.healthline.com/health/palliative-care-vs-hospice

I don't think I'd put a family member through treatments for the cancer given how the dementia (a terminal disease in and of itself) would make it hard for her to understand what's going on. You'd be putting her through what might be a difficult course of treatment to extend her life (if successful) so she can die of dementia.

Sorry to be so blunt. My mother passed away this Spring and she pretty much hit every branch of the dementia tree on the way down, and so the above would be my choice for her if I were in the same boat.

harshedbuzz · June 19

@stoneman133

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

You sound like a loving son. Given the stage of your mom's dementia, I feel like the kindest thing would be to bring in hospice instead of treating the cancer aggressively. The treatment is miserable and she wouldn't understand it. Chemo could even hasten the disease progression. FWIW, there are caregivers who pray for an exit ramp to spare their LO's end-stage dementia.

A dear friend whose mom developed breast cancer elected to not treat it. Mom had supported sisters through cancer and said she would not treat beyond age 80 and stopped her annual mammograms but even so, friend found making the decision gutting.

She brought in hospice once mom became uncomfortable. It was a positive experience for both of them. I would encourage you to do it sooner rather than later. You might even consider a hospice house instead of bringing help in.

Thinking of you.
HB

terei · June 20

I would not treat except for pain and IMO hospice should be involved now.

H1235 · June 21

Welcome. I agree with the other comments. The end for a person with dementia is pretty ugly. Sadly cancer might actually offer a swifter end with less suffering. I will attach the dbat just in case you haven’t seen it. If you read through the symptoms in stage 7 you can see how awful it will become. Worse yet look at how long stage 7 may last. I’m so sorry you are faced with this horrible situation. We obviously don’t want to loose our loved ones, but don’t doing all you can to keep her alive and suffering is not right. Even at stage 4 dementia mom said if she were to be diagnosed with cancer she would not want treatment.

DBAT.pdf

JulietteBee · June 21

Quality of life MUST be considered! However, you are in a tough spot. Without being her Healthcare Surrogate or her POA, do you have the authority to speak FOR her? Even if you do, do you feel comfortable doing so?

Currently, my DM is being prepped for cardiac surgery. When she was in her "right mind," she never wanted to do the surgery as it, often times, need to be redone as the first time is not successful. Since Dementia has come on the scene, mom has vacillated many a times, wanting to do it, then back to not wanting to do it.

Despite my being her DPOA and Healthcare Surrogate, I do not feel qualified to make that decision for her while she is still cognizant of what she is consenting to. I told her I will support whatever decision SHE makes. With that, she scheduled surgery for June 29th.😢

All the best with your decision and all the best with mom. This is a difficult road to travel. We are happy you found your tribe, here. We will walk with you, remotely, through the muck and the mire.🫂

stoneman133 · June 23

I thank you all so much for you input and information that has been shared.

I do have the proxy and DPOA in place - although she has not been designated mentally unfit as of yet. Meeting with her primary tomorrow to go over that and his take on what is going on.

So much to take in, the Radiation Doctor seemed more like a sales meeting than an actual medical consultation. My Mom did not seem to completely understand what was being said or agreed too.

H1235 · June 24

https://alzconnected.org/discussion/comment/275773#Comment_275773

I think the specialist often looks at the patient with blinder on to all their other issues. They think only of their specialty. I hope the pcp can help you.

Victoriaredux · June 24

A course of treatment or an operation need follow up testing and visits. None of which is easy due to travel time, stress . And there is always the risk of side effects that will make their future care harder- including the impact of going under anesthesia. Will they accept the tubes and needles, follow nursing instructions? Can you afford it if they need to move from AL to a nursing home?

psg712 · June 27

This is such a personal decision with many factors to consider. A few thoughts I can offer:

Any oncologist should be looking at the patient's overall health. Just as they would need to factor diabetes or heart disease into their treatment plan, they should also consider dementia when making recommendations. Both the effects of the dementia on her ability to tolerate cancer treatment AND the effects of the cancer treatment on her dementia should be weighed into the decision.

Radiation requires her to lie very still, in the same position each time she goes, alone in the room with a large machine moving around her. Typically it's not a long time with each treatment, but when they do the original setup of the treatment it can take extra time. She'll need to hold her breath when instructed each time she goes for treatment. Will she be able to cooperate with this on a daily basis? Follow instructions for skin care? Nutrition/hydration?

Have you asked the oncology team what the expected trajectory of her life would be if she takes no treatment? With her specific cancer and stage, what are the goals of care: cure, control or palliation of symptoms? How much longer would they expect her to survive with treatment than without?

My mom survived breast cancer many years ago with treatment. I am both a cancer nurse and a cancer patient. I see good reasons to accept treatment and to refuse it. The confounding factors for someone with dementia: can she understand her illness well enough to make an informed decision? Can she care for herself properly through the treatment? Is she a person who previously wanted to live as long as possible, no matter the cost in suffering or disability? Or did she draw a line beyond which she was not willing to go in order to extend her life?

Very tough decision. Please let us know how it goes for you and your mom. I do offer the concern that, even without cancer, your description of her abilities sounds as if she should no longer be living alone.

stoneman133 · September 23

Once again I thank you all for your support!

She is now living in assisted living with memory care without cancer treatment.

Several days after she moved she did get pneumonia and was hospitalized, she has since recovered and is on oxygen moving forward. She wants to go back home, although she is not sure where that is these days, but does at least spend time moving about and talking with people. This is good step from being on the couch for most of her days back home. She has even put on a couple of pounds being she is eating with people instead of snacking all day. I was able to put her on the patch to quit smoking, being there are people to administer it (she would have either had 5 on or non at all by herself). Still is fighting about taking meds but at least she does take them for the most part and it being monitored.

Rough days ahead, but at least for the time being she is getting more out of life than she was by herself.

What can I expect for my Mom

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