Only child - mom in nursing home - question about "comfort care" only.

Karen, carol works for AC Site, I think she does care-she responds frequently to posters concerns. Re-read n read between the lines a bit...carol has done a lot of CGing. I'm going to look up how to get info on FL facilities ratings. I agree, something is wrong there. Also ther would be an ombudsmen for facilities in ur area-they could help u with this big ole mess. Contact them! Kimbee

Kimbee, that n.h. is so screwed up I think they have their head up their $ss - you know what I REALLY hate???Is when people say "good luck" what does that mean???????????????It means they're answering a quiestion but really don't care that much, right? I'm sorry my reply was so blunt - I don't know why I said that- it's early here. Yeah, about that paperwork - ONLY her initials were on it - nothing else - not sure why. Anyway the whole place is messed up & still is - oh & something else happened - we were literally in the MIDDLE of a phone conversation, Kimbee, I mean the MIDDLE of it & she just hung up - that was it - when I called back she said "oh I was finished so I hung up" I'm not buying that one - something's terribly wrong...Anyway do take care & keep in touch. Karen

So how was your vacation? Glad to hear it was good for your mom - we're still plugging along like you. Take care, Karen

Hi Karen, been on vacation. See you've been having a time there, sorry to here it. It bothers me to hear her name isn't on her paperwork-n confusion over blood draws. Yes mistakes happen, but YOU ARE in charge of her n they ARE to respect your directives as you r HCPOA. why no coordination w facility dr or DON re care plans- they should be asking you to sign plans etc. Sorry I lost touch w u. Let me know how u r doing? We r plugging along-my mom has declined rapidly but vacation was good for her. Take care, kim

Jeanne, That damn n.h. got me so confused in May I'm surprised we even went on our trip!!!! First they tell me "she can always refuse" then why ask me about Hospice care???Then they think she's crazy because she calls what she does every morning "therapy" well, the "facility" doesn't call it "therapy" SHE'S 93 YRS OLD - OF COURSE SHE'S GOING TO CALL IT THERAPY Don't usually yell, but I'm tired of this stupid place!!!!!So that's why they told me the dementia was progressing. It's too soon for Hospice but now that I just told them I don't want ANY blood draws, it may come sooner than later...Jeanne, don't know if I answered your question but I'm just so frustrated with that place - the nurse said the doc ordered potassium levels to be drawn. Well, that's STILL invasive, right & mom hates having her blood drawn! I'm just trying to respect her wishes, that's all!

Karen, it sounds like hospice would be consistent with your views and your mother's. You mentioned that she is "stable". Would she qualify for hospice at this time?

she's not under hospice care. Yes, I was aware of my mom's wishes before the mild dementia set in. She doesn't want to be kept alive at all costs. When I asked her if she "passed" in her sleep does she want them to "bring her back" she asked me "what do you think" I briefly explained a DNR & she said "Oh I understand what you're saying, no I don't want any of that." She even signed a form for a DNR order. Well, since she's NOT under hospice care, the home's in charge of her care - following my wishes. I'm er PCG & DPOA. Carol, one thing you'll understand about me is I'm quite unemotional about too many things. My mother doesn't see her doctor anymore - she doesn't want to - the facility's doc sees her but I've NEVER met this doctor. Not even on the phone. Mom likes where she is & I can't change anything. I'm quite frustrated at this point. Thanks for replying. Karen

I'm not clear about whether she is under hospice care now just the nursing home is in charge. Hospice may draw blood if they feel that they need to know something that will help keep her out of pain or feeling better. They won't take measures to extend her life.
Were you aware of your mother's wishes before dementia set in? How did she feel about comfort care vs. keeping her alive at all costs?
I'd find out who the one person "at the top" of her care is (nursing home or hospice) and talk with that person. In a good nursing home, once hospice takes over, they should be making the decisions, even though the nursing home staff also works with them.
Ask specific questions about what is needed for comfort care. Try not to be emotional. It's best if everyone is working together, and sometimes that just means making sure the right information is provided. You have the right to ask questions. You can also talk with your mother's doctor and ask what tests are necessary for comfort care. In the end, if you don't get satisfactory answers, you may want to look into changing hospice or nursing home organizations (if you have a choice in your community.) Good luck,
Carol