It's not a great place and she hates it. Her rehab days already ran out but they're going go keep her there because they were able to take her off Humana and put her back on straight Medicare which covers 20 days and we have a pending Medicaid application. But I need to get her into a better long term nursing home that's closer to family. I spent her first 3 days there for about 8 hours with her, and then my brother and sister were there today for a few hours each. I'm afraid to leave her alone for too long. I'm lucky that I'm off from work during the summer otherwise I couldn't be there. Part of me thinks since I'm there for so long, plus it's an hour drive each way, that maybe I should have kept her at home and just dealt with everything myself. We found 4 facilities, 2 of which that are closer to home, and 2 that are just as far, but all 4 have far better reviews than the place she is in now and other options. I just hope a bed opens up soon and maybe we'll get lucky and they'll take her before the Medicaid kicks in.
My mom has terminal liver cancer and finally receives her first immunotherapy treatment on Tuesday. It kept getting delayed after being diagnosed 2 months ago because of being in the hospital 3 times. She seems to be declining cognitively. While we know immunotherapy won't cure her, we're hoping it may do something to help clear up her confusion and extend her life.
24/7, all I can think about is mom and worrying about everything. I'm peeved that my sister is choosing to keep 2 jobs (one ft with high pay and one pt with low pay) in the summer while she pays nothing more than a car payment, insurance, and her cell phone - no rent or utilities or anything - while my mom is going through everything. It's out of greed, not need. I was already burnt out with my mom at home and now it's just continuing with her at this crappy nursing home and I can't rely on my sister to visit more than once a week for a few hours while I'm going to have to be there everyday like a FT job. My house is a mess and I just want to do something fun but I'm gone from 8am till 7/730 pm. Today when my siblings gave me a break all I could do was sleep, I got nothing done. My brother has a baby coming on Friday so that's his priority right now.
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I'm sorry you're so exhausted and stressed out with this situation you and mom are in, which is kind of a no-win situation at best. Immunotherapy for terminal liver disease sounds futile to me, but it's mom's wishes, so what can you do but agree? I think you should cut down your 12 hour visits though, and allow the SNF to do their job. If the CNAs don't respond immediately to your mom's needs, so be it. Remember that this is mom's CHOICE to have the immunotherapy and these are the terms by which it's being done. Nothing is perfect, God knows, and if YOU break down b/c of sheer exhaustion, then what? Do what you can and let the rest go. Take care of your own needs too, and remember that your health and wellbeing matter also.
Best of luck with a very stressful situation. Sending you a hug and prayers for peace.
Your sister made her decision. Many people just do NOT do 'caregiving' well and she has the right to her own life and her choices to work.
End stage liver disease is awful. I'm not questioning why she's opting for treatment, when all this is going to do is buy her some more time in misery. Her choice. Is she scared to avail herself of Hospice or Palliative Care?
Sounds like you are her only advocate, and I know that is hard. But think about the quality, or lack thereof of your mom's life.
You can only make choices for you, not for sis, and she is doing her own life.
How old is your Mom? After a certain age I would not even consider chemo if it going to make her sick. Its quality of life. Why not just bring her home with Hospice care since ur off the Summer. You already are spending 12 hrs a day with her. If she has money, hire an aide for when Hospice aide is not there. Maybe family would be more willing to sit with her at your home vs a NH.