Dementia vs stage 4 lung cancer - advice needed

Hope5757

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.

H1235

When my dad had lung cancer (no dementia) he wanted treatment to get better. He had no appetite and said food didn’t sound good. Mom and I pushed him hard to eat. He was skin and bones. After he passed we both said we shouldn’t have spent that precious time with him arguing about food. Hindsight. It is so tough to know what to do. Dementia is such an ugly end of life. I agree, I can’t see pushing someone in that condition to do things they don’t want to. It’s a matter of acceptance (on the part of caregivers) that some of these things probably won’t make much difference anyway.

Hope5757

Thank you @Chug -

Hopefully, I can ease his distress at watching his mother fade daily and redirect his desire to help her.

Quilting brings calm

I wouldn’t try to differentiate between what is a lung cancer symptom and what is a dementia symptom. She’s ill and she has two terminal diseases. I wouldn’t make her do anything she didn’t want to do- eating included. Sponge baths are perfectly acceptable.

Also remember- the aide answers to you - not the other way around. She should be honoring your wishes in these matters

Hope5757

Thank you @Quilting brings calm -

I usually have no problems being in charge but healthcare/caregiving is completely new to me. And with my spouse having said similar things many times, I wasn’t sure.

wctraynor

Hospice will be such a god send for you all. They are like helper angels making your loved one comfortable for their last months. My mom is stage 6 dementia and doesn't know she's on hospice watch. she just knows theres a lot of lovely people who visit and help out. And i feel better knowing her comfort is the foremost concern. Mom eats whatever she wants and skips the unpleasantness of bland or boring food. Hot chocolate with whipped cream every day. What a way to wrap up your life! I hope i get to do the same thing when its my turn.

psg712

Exactly what Qbc said. Comfort care at end of life. Explore your aide's understanding of terminal stages of both cancer and dementia, and see if she can let go of the need to promote activity over comfort. If she can't, she may not be the right fit for your MIL at this time.

Second wctraynor's recommendation for hospice. They can help your spouse understand that his insistence on making his mother eat is probably not in her best interest at this stage. They will give good care to MIL and be a support to your family as they travel this hard road.

Hope, you may not have healthcare experience, but your instincts in this situation are good, and your love and kindness to your MIL are such blessings. Keep us updated.

mommyandme (m&m)

When my mom progressed to the stage of needing to be changed in bed with adult tabbed briefs, we got the hospital bed in her bedroom to make changing/cleaning easier for me. Changing on a standard bed is very hard on the back. I still got her up and into her recliner in the living room. Hospice was also still getting her into the shower. There came a time when getting her up, standing and pivoting again and again to bed-recliner-bed was simply just for me. I felt it would grant her a better more “active” life and as her caregiver, my responsibility. Well, she ultimately hated it if I’m honest. She was so fearful that it seems I was torturing her. Finally, when I came to accept her discomfort and new milestone of her disease, I adjusted and moved the hospital bed into the living room. I still tried to get her to the recliner two feet away at first but eventually came to peace with her bed bound status.

Having been through this, I don’t believe the aid is on the right track with her no nonsense approach yet I understand the mindset. Leeway should be allowing your MIL to be comfortable and for the caregivers to adjust to this new reality. What if she only has weeks left, is making her battle through the discomforts the way anyone would like her to have to endure her last days? If hospice was on board I imagine a hospital bed would be in order, if it’s not already, and an alternating air mattress to help with pressure pains and sores. That mattress is amazing in helping to roll a patient too. Keeping a bottom clean doesn’t need to be in a shower or even on the toilet. Even though bed bound for months, my moms bottom was the cleanest and shiniest in the land, per her hospice nurse and CNA. We washed her hair in bed and cleaned her no problem. This could only happen because I accepted and adjusted. I believe mom was very comfortable that way til the end. Her world was indeed VERY small and that worked for her.

Your MIL deserves her dignity and to be comfortable, that’s the job of the caregivers. No offense intended. I know how hard it is as do all of us here on this forum. I’m so sorry you and yours are going through this too.

Hope5757

Thank you @wctraynor, @psg712 and @mommyandme (m&m),

I’m sorry I haven’t responded sooner but we’re back in the hospital for observation after her PCP became concerned about kidney values.

The great news is that we’ll be meeting with a palliative care specialist to determine if palliative care or hospice would be appropriate.

I’ve taken everyone’s comments to heart and will ensure the aide’s focus is on providing comfort and care first and foremost.

Thank you again for the community’s kindness and support.

mommyandme (m&m)

Hope, no apologies needed. Let us know how things are going. Your MIL is very fortunate to have you in her corner. I hope her future care plan comes together peacefully for all of you.

psg712

So sorry to hear that she is back in hospital. I hope that she receives the care she needs and you her family get all of the information and support that you need.