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My Mother Isn't Dying (Yet)

Really sick people need hospice... and people are "dying" to get it.

Photo of Kathy Brandt
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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. 

What is a provocation or insight that might inspire others during this challenge?

If I can't figure this out, how on earth can other folks who don't live in this world possible get the help they need.

Tell us about your work experience:

I'm a hospice and palliative care consultant - I'm not a clinician. My background is in program development and implementation. I'm helping to "build" community-based palliative care programs.

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Photo of Kathy Brandt

Thanks so much Ann-Laure.  I'm lucky in that I know some of the questions to ask and I know many people who know what other questions I should ask.  I just know that others don't have the same access to knowledge and information that I have.  Plus it's like having a part-time job in addition to my full-time job and home life.  Caregivers with less flexible schedules often lose their jobs, cut down their hours, or turn down promotions because of the demands.  

Photo of Anne-Laure Fayard

Thanks Kathy for sharing your experience. Great provocation regarding the difficulty for family members to navigate the system. I hope you'll find a way to get your mother the care she needs.