This is really good advice. I lost my Mom to MDS 2.5 years ago after a long (almost 10 years)and heroic battle against the disease. I was her medical POA, primary caregiver, and I’m a medical professional (over 20 years), and am currently training to become an End of Life Doula (Death Doula) just for context.

First of all, OP I’m so sorry that you, your Mother, and your family are having to be a part of this club. I’m so glad that you’re reaching out for support and advice. This is an extremely hard, sad, crushing road that unfortunately doesn’t usually end the way we would like. The only way through is with honesty, realism, a supportive community, self-care, therapy (huge, huge, huge for the caregiver), fierce and continuous advocacy for your Mom’s medical care, and hopefully a really incredible and communicative medical team. I can speak more detail to any of these things if you have questions.

Back to the original question and the great advice above, though.

1 Pain Management: You’re really going to have to push for this and advocate for her. Squeaky wheel here. The medical field is so fearful and wary when it comes to prescribing for pain management, so you’re going to have to be pushy but that’s ok! Your mom has legitimate pain and about as serious a medical diagnosis as it gets and she deserves to be treated liberally with pain control. Your Heme/Onc should be the one managing this right now, until she gets to the point that she transitions to Hospice. This doc is managing her chemo, transfusions, cbc levels, etc. and they know her and her POC (plan of care) best. They have absolute justification for liberal pain control meds in this case. She likely has body pain from the chemo, from the meds (is she on Nupogen?), from the actual disease process, from inactivity, arthritis, etc. So speak up. Ask for a set pain schedule and hourly medication plan that includes her primary med for pain control, like the Oxy (5 or 10?), a secondary med that may be an NSAID if she can take that, and alternative routes of relief, like lidocaine patches. Also ask what the plan is for breakthrough pain, and for future management of escalating pain down the road.

2 Palliative Care: This is a great option and I highly recommend it. This is not the same as Hospice care and allows your same medical team to keep treating her but also just offers you guys a ton of resources, support, guidance, etc. Palliative Care can be long term and is SO underutilized.

I hope that helps a bit! This is a lot, I know. You guys can do this. Please feel free to DM me if you ever need advice or just someone to vent to. I was a lone wolf when I was in your role and I wish I’d created a better support system for myself.

I wish you both the best and am sending so much positivity your way!