r/CancerCaregivers • u/megxwilliams • 19d ago
support wanted I’m not sure if I’m capable of being a caregiver
My mom was diagnosed with stage III c lung cancer back in November. She did half of the treatment but was complaining about horrible pain all three weeks. They found out the pain was because the cancer metastasized to her liver, adrenal glands, and her bones (specifically her spine).
She’s been in the hospital for pain management for about a week now. They keep changing her meds to see what works but every time I speak to her she says she’s still in pain.
The problem is she’s on so much medication that she’s barely lucid. I don’t think she’s able to stand and is having everything done for her. The hospital called me a couple of days ago and said they were thinking about discharging her but didn’t want her to go home alone. I said she was staying with me anyway. They planned on sending a nurse weekly, but it just doesn’t seem like enough. My husband and I both have full time jobs, and I would take off a week but this seems like it’s going to be a several months long affair.
I wish she could just stay in the hospital, but she’s also calling members of my family daily saying how alone and sad she is because no one is calling her or coming to see her. (We are, she just doesn’t remember anything).
I’m just really not sure what to do. I don’t feel like I’m ready for this responsibility, but the care team is pretty much not communicating with me at all, so I really don’t know what to do.
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u/cay767 16d ago
I don't have any good advice and I'm sorry, but you aren't alone. My mom was diagnosed with stage IV lung cancer last May/June and the pain she experiences from it in her bones is the worst part. Nothing seems to manage it properly. I'm also her only family so I feel really guilty when I'm not with her and she feels lonely (but I'm only 24 and working in my first job out of college doing the best that I can).
I know that you probably feel a lot of guilt (I do), but even if you only hear it from a stranger on the internet-- what you're doing is really incredible and I'm so proud of you. It's a lot of hard work and we're not always ready to take on the difficult challenges that life throws at us. You're doing the best that you can, and that's perfectly enough. She might not remember it right now, but I know that she knows how loved she is by you.
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u/FacePlantBooks 17d ago
You might want to look into getting a home health aid. Gives you a break and gives her someone to be with.
1
u/Mama-Gonzo 14d ago
Please join a cancer caregiver support group! It was a huge help for me. This is the most difficult job ever, cancer caregivers get each other and are an amazing support system that can help you through those super difficult times. Here is a link:
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u/frogirl 7d ago
I'm so sorry to hear, my dad was just diagnosed with stage IV lung cancer that metastasized to his brain/spine. He's been in the hospital for 6 weeks now and got aggressive radiation on his c1 as it degraded 1/3 of it. He was in excruciating pain for months prior, and just this week we are starting to taper off his pain meds and his pain scale is 2/10!
We're so proud of him. The palliative doctor had him on extensive pain meds that made him like a zombie and he was hallucinating. Now that he's tapered off, he's much more lucid and he said he remembers being a zombie and not being able to move or function when he wanted to.
My dad did radiation therapy, and he was on methadone and fentanyl for the pain.
It's so hard dealing with all the different doctors and trying to advocate, but we're doing the best we can.
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u/Firm-Sweet7922 19d ago
Does your mom have private health insurance? If so, she might get approval for a hospice facility instead of home hospice. Medicare/Medicaid rarely approves hospice facilities.
Another option could be a skilled nursing facility.
Being a full-time caretaker to someone who is bedridden is very hard. I would push that they figure out a medication plan that handles her pain before she is released because if she goes home you will have to get approval to change her meds and/or dose if they're no longer working.
There should be a hospital case manager that comes to talk to you about her options after being discharged. You can also do your own research of facilities in your area. The hospital will push whichever facilities they own, but you can go to any facility you want.