Dementia vs stage 4 lung cancer - advice neede

Hope5757

(cross posted from caring for a parent)

For those who have experience being a caregiver for someone who has significant co-morbidities, could you help me understand how to address my MIL’s changing needs?

MIL is almost 92. She has had lung cancer for 10 years. The oncologist believes the tumors are very slow growing due to two immunotherapy treatments 7 years ago. Recently, she’s become oxygen dependent due to the tumors impacting her breathing.

MIL was diagnosed in Dec 2022 with middle stage dementia. Until a month ago, she was progressing steadily and was pretty much early stage 5 according to the Tam Cummings chart.

Since her hospitalizations for breathing issues, she seems to have progressed immediately to early stage 6 and requires assistance with all ADLs. But because of the lung cancer, in some ways, she acts like she’s in stage 7. She sleeps 18-20 hours a day, eats about 500 calories a day, refuses sweets (including ice cream), only moves from her bed to a recliner in the living room because I insists she move.

She denies being in any pain other than coccyx pressure and sore knee. She’s on Gabapentin and I give her Tylenol for pain.

She’s very depressed but seems to have forgotten she has lung cancer.

We just hired a personal care aide who is a no nonsense person. The aide and my spouse (her son) says I give MIL too much leeway. If she refuses to shower, I give her a sponge bath. If she says her tailbone hurts but she can’t stand up, I pull her body up using the blanket she’s lying on. The aide says she’ll make sure MIL is safe in the shower but that not showering won’t be an option. When MIL said her tailbone hurt and didn’t want to get up, aide made her stand up for one minute then helped her reposition.

I think because I believe MIL is dying of the cancer, I’m loathed to make her expend her energy. My spouse is still trying to make her eat. I no longer do anything about nutrition other than present her with her favorites.

How do I know if a symptom or behavior is cancer or dementia? I know it shouldn’t matter but it does. I can’t even imagine making a person dying of cancer do anything they don’t want to do. 

We are currently discussing hospice. 

Thank you.

midge333

She has two terminal illnesses and it sounds like she is in her final decline. I would recommend hospice immediately. I would give her food and drink for comfort only. Care should focus on her comfort and happiness.

Hope5757

Thank you @midge333 -

Her daughter and grandchildren will be here this weekend to see her. That will help the family make a united decision regarding hospice.

M1

I agree completely that hospice would help. It doesn’t matter which illness is causing what. I don’t think you have anything to lose by calling now?

Hope5757

@M1 -

We have an appointment with her geriatric specialist tomorrow and I’ll ask about hospice. We might be better off with palliative care for now as I want to continue having access to her PCP.

It’ll be a very difficult discussion with my spouse. But you’re right. I need to break through the wall of denial.

harshedbuzz

@Hope5757

I had a friend whose mom had dementia (likely Alzheimer's) and breast cancer they elected not to treat. Having watched what her 2 sisters with breast cancer endured as treatment, prior to dementia mom opted out of mammograms and informed her daughter she would not treat if diagnosed. Friend found a lesion when it had already progressed and struggled with honoring her mom's decision but did so. She already had a handful of competent professional caregivers for her mom so she didn't want to add hospice right away. Once she did, however, she regretted not bringing them aboard as soon as the cancer diagnosis was made.

TBH, friend had mom's care well covered. She took family leave, hired a couple aides to stay with mom a couple times a week and manage most of the showers and we have a mutual friend who is an RN who could check on mom if there was an emerging issue. Hospice added to this, but the really critical service for them was the support family got in terms of information and reassurance. The chaplain was especially useful for her, so much so that she elected to have the hospice chaplain officiate the funeral rather than their parish priest.

It sounds like your DH, especially, could use this sort of support now and after the inevitable happens.
HB

housefinch

I think many adult children struggle to accept that, at 91, every day their parent has is a bonus day. Even without dementia and terminal cancer. I would definitely get a hospice evaluation and I hope your husband can have some good moments with his mom in the coming days. If she actually rallies and improves, great. I am not very optimistic for that, but occasionally people surprise you. Hugs.

Hope5757

@housefinch - thank you. That is my hope also.

@harshedbuzz - Making your end of life choices known plainly and in advance is such a blessing. I wish MIL had done so.

SSHarkey

I completely agree with everyone! She’s 92 and feels miserable! Make her comfortable and don’t force her to do anything she doesn’t want to do! If I were in her shoes, I would want to be able to just relax and be pain free.