My mom has made it through 6 months of hospice and just got recertified last week. Until now, she has had no pain or symptoms other than lost a lot of weight and getting weaker, in bed resting more than out. Just in the last 10 days, she is eating much less and 'nothing sounds good'.
After her hospice nurse left today from her usual weekly visit, my mom's boyfriend took me aside and said yesterday she had trouble doing her bills and checkbook. I recalled she had recently stopped her beloved reading hobby, saying she just got bored of reading. I asked her to read a large one sentence headline in a magazine and she got most of the words wrong or just couldn't figure it out. Reading, writing, and simple math all became impossible for her last spring which is how she got diagnosed with nsclc with mets to brain, adrenal, lymph and also mass on ovary. Has been one year and 2 months since wbr. Stopped Namenda in October, all was good. Been on hospice since Dec. when ct showed progression in lung,lymph, and adrenal. Didn't want to try Tarceva or Taxotere...living out her days...loves hospice.
Should I call hospice to tell them this or wait until regular visit next week? Do they scan brain for mets and maybe Gamma knife or try steroids while on hospice or is that considered treatment and therefore no, and she would have to go off hospice to do that? What would you do for your mom? We know she is terminal...I just remember how quickly this turned around before. Or, keep her comfortable as possible and let it run it's natural course?
I know you can't specifically advise on my mom without seeing her, but from your experience with others could you give some hard fought wisdom?
Thank you for any help you can give,
Tonya
Reply # - June 24, 2015, 05:10 AM
Hi Tonya,
Hi Tonya,
Let me first say how wonderful to hear such great success on hospice! It's impossible to say what it is without looking but it does sound like it may be brain met recurrence. I wouldn't want to say what a hospice may allow but with hospice responsible for the bills I'd guess they can't pay for gamma knife if needed. However they may pay for scans but you'd need to ask your specific group.
It's very possible to go off hospice for treatment then return, though it sounds like someone other than your mom wound need to make all the arrangements. For just a few mets gamma knife has worked well for many.
I hope this helps and the best of luck and hopes,
Janine
Reply # - June 24, 2015, 07:36 AM
Hi Tonya,
Hi Tonya,
I too am glad to here that your mom has done so well on hospice. In addition to the great information Janine provided, I would just add that hospice may be willing to provide steroids to reduce the swelling from possible brain mets, although they might require a scan first. Since steroids can often provide a quick reduction in symptoms from brain mets, I don't see any reason to wait until next week's visit.
Best wishes,
JimC
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