Annie,

I also urge you to persist with hospice. Are there agencies in your area other than the one you consulted earlier? As I mentioned, my mother had a very low red blood cell count in her last year, but until the day she died, she was able to get up and walk a little. (She hated being in a wheelchair). I walked with her during the very day when she died in her sleep. Weakness need not be totally debilitating; the human body is very resilient. Don't give up.

Doris

AnnieN,
What you describe is a drastic change in your mother's medical status, certainly qualifying her for hospice. Ask the MD's office which hospice organization they recommend. Or ask the facility where she's been living about this. Don't take no for an answer.
Robin

As you can tell, I'm hesitating. For one thing, I don't think hospice nurses can handle my LO's mood swings and I don't know if I would trust them to keep her from falling. I can read her mind sometimes (that's what it seems like) and figure out what she is saying when others can't. She has so many disabilities; apraxia, visual processing, balance issues, executive function loss, agitation, cognitive variation, paranoia, hallucinations and delusions. She is also extremely smart and can trick or convince people to do things that they shouldn't. On the other hand, she literally can't open a door even when the door isn't closed.

I'll think about it. I think the physical situation may become predominant in which case I'll act.

Annie, there are two kinds of Hospice services: Inpatient facilities and home health services. I have worked in the latter. If she goes on Hospice home health, she would stay where she is and have Hospice nurse visits but her day-to-day caregivers would be the same.

AnnieN,

You are right: hospice cannot prevent her from trying to walk and falling. That's not their job.

By bringing on hospice, you are helping your mother and helping yourself.

Robin

The Hemoglobin count in one month has gone from 9.9 to 10.4. She has color in her cheeks. She has gained a little weight. She still wants to die but I think she is going to have to wait.

As I've posted before, my Mom was turned down for a second time by hospice. I guess they were right. I look at our progress month by month. We had a pretty good March. Thought you might want to know.

Hi Annie,
I have read your posts and wanted you to know that as a Hospice Volunteer and caregiver to My Aunt who suffers severely right now with LBD, that you must never give up as there are so many Hospice programs out there. YOU will find the right Hospice at the right time. I have known Hospice to take care of people for a few yrs that are still mobile yet Terminal. Dont give up and God bless you and your Mom.

I think in an urban area there probably are choices for hospice, but in rural locations, you're lucky if you even have a "choice" of one. We have no choice, but there is at least one available, for which I am very grateful.

Thats great Annie.. and I know that they will be of comfort to you and your mom. Today Hospice brought in a Hospital bed for my Aunt (my moms sister) she is 93pds and declining rapidly from LBD. She still hallucinates at times but not so bad as before we put her on Seroquel. She was walking a week ago and standing and now she cannot shuffle, pivet or stand which makes it hard to lift her. She still shows Parkinson symptoms but they come and go now. Its like wait a minute..that hand is shaking and the other leg is not? Oh".. but now it is..and now its stopped ..but active in another hand again. She is also having contractures (Ridgididy) in her foot and hand and knees. I hope you will share your story on how your mom progress's as I am very interested in the education and experience in ones LO's story. God Bless!