I'm supposed to know how to do this. I should be able to navigate this and create a better experience for my mother - after all I've worked in hospice and palliative care for my entire career.
My mother was diagnosed with dementia in February, has needed progressively more helps with activities of daily living since then, was hospitalized this month for a week with what was diagnosed as asthma, and is now likely to be discharged from skilled nursing to her independent living apartment with oxygen and ongoing daily support.
In less than six months she's gone from fully independent to this new state of dependence. I've flown down twice to take her to doctors, dispatched my sister in law to help her transition from the hospital to skilled nursing, and am heading back in a week.
She's seen pulmonologists, neurologists, hospitalists, podiatrists, and has had numerous x-rays, venography, CT scans, an EEG and probably other tests I'm forgetting. She seems to keep getting worse.
She Needs Palliative Care
She has way to many doctors and NPs and yet the one clinician -- the one team she desperately needs isn't available to her.
Her area doesn't (yet) have community-based palliative care. And while I've called in favors to get her evaluated by a palliative care physician and NP, they can't provide ongoing support.
My mother isn't dying - but in some ways I wish she was so she could have hospice.