Hospice is coming for Mom today.
Some of you are aware that my mother has some sort of blood/bone marrow disease which she's refusing to have diagnosed or treated. She has been getting iron infusions and some Procrit after being hospitalized in March and that has helped her feel better.
She says she still feels fine (and acts like it) but I took her for routine blood work yesterday and her white count has jumped from 30,000 to over 60,000 since March. It alarmed her doctor so much that she called to send Mom to the hospital as soon as she got the results. Mom has refused to go, even though she was warned that this could portend a major crisis of infection, hemorrhage, stroke or other life-threatening complications.
The doctor said if Mom won't go to the hospital that she's sending hospice to her home. Mom said absolutely not. Doctor said they're coming anyway. They're sending someone very sensitive who can explain the hospice services very gently to Mom.
Thing is, Mom is now having home health care since her last hospitalization and it's due to end soon. She loves it, especially the woman who comes in and bathes her once a week. She can only keep that by agreeing to accept hospice. But she's dead set against it, just the idea of it. This won't be pretty. It never is when Mom doesn't get her way.
As much as I think it is a good idea, I also think people who are cognizant should have the right to choose what they want, but then accept the consequences of that choice. It sounds like your mom refusing hospice would mean the end of the home care she loves. Oops, I read all the comments so it sounds it is no longer an issue, but the point still stands. I think cognizant people should have the right and dignity to make their own choices, even if others disagree, but then the LO has to accept the consequences of that choice.
I don't know why our elders are so resistant to Hospice, and so many other great programs out there. My FIL was initially resistant to Assisted Living at first too, and once there he Loved it! I so wish We had done it sooner! Unfortunately, he only spent about 12 weeks in residence when he fell with Septic Pneumonia, and it was in hospital that they found advanced Lung Cancer on the xray and CT, and then we brought him back to our home on Hospice, of which he also Loved the attention from his carers, and where he lived out his remaining weeks.
I believe that so much of their unwillingness comes from their prideful nature, and the fear of the unknown, and it's sounds like you got a Nice, Kind and Informational Hospice Nurse, who put her at ease, and was able to explain the virtues of Hospice, and that made her comfortable with her decision to move forward with care, good for her! My FIL Loved his twice a week baths too, especially the lotioned massage at the end! Plus, he just Loved the fact that he felt he was "finally" getting use of all his hard earned government benifits, go figure! They were Wonderful to him!
BTW, while the X-ray and CT showed a large mass (prior health history, appearance, "long time smoker"), it was "presumed" a Lung Cancer, but no Biopsy was ever done, due to his weakened condition and him not wishing to go through with it, thankfully the Drs are able to qualify the eldery with Symptoms and Presentation, and diagnosis codes. It sounds like there is a consideration of some type of Bood Cancer in your Mom too. I think that sometimes it's better Not to go through the harsh assessment of a full/specific diagnosis, if the treatment of such would not change the treatment nor outcome, and might even make things harder on the patient. My FIL had battled Lymphoma for 12 years too, he knew that he wouldn't want aggressive treatment again.
Having Hospice care at home isn't always easy, but the support they do give is immeasurable, and now hopefully you and your sister will have some much needed guidance and assistance, to help you through this trying time. Take Care Carla!
Please do keep us in the loop.
And make sure the program is Hospice, not Palliative Care, especially if your mother is continued on meds. As I posted elsewhere, I learned that meds aren't covered under PC, as I mistakenly though they were.
Try to have a nice relaxing weekend.
My sister was free today and went over to my mother's to meet the hospice nurse with her. Sis asked Mom to just keep an open mind, and apparently some magic happened because Mom eventually agreed and signed up. Maybe it was the promise of regular bathing...Mom was dead set against that too, but once it started she couldn't say enough good things about it.
I'm relieved to know there will be support there if we need it. I hope they've left some literature for Mom and Sis so I can catch up and understand how the program works. I'll keep you posted, for sure.
I recall your various posts, the problems and issues you've addressed. Now the situation has reached a critical point, and I feel the sorrow expressed in your post.
Please know that I'll be hoping for a resolution that's as easy and peaceful as possible. You've been on a long, long journey.
As to presenting the hospice issue to her, maybe it's time for one of those therapeutic fibs. You might try explaining to her that there are some new regulations (blame orange hair for those!) that require her to have additional people involved in her care.
Can your sisters afford to keep the caregivers she likes as private duty carers?
The social worker at the rehab facility who explained PC to my father did so in such a compassionate fashion that he was able to agree to it, which was necessary for them to implement it. They refused to allow me as proxy to authorize PC care.
Perhaps this hospice representative can try something like that. I wish I had some better suggestions.
Please keep up us to date on this unsettling situation.