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[quote=Anonymous][quote=Anonymous]Hi OP.  I am a hospice chaplain.  I've worked in hospice for almost 20 years.  I'm happy to answer any questions you have, non-medical of course.  In order for a patient to qualify for hospice care, a physician must certify that given a normal progression of the disease, death is likely within 6 months.  That does not mean the patient will die in six months.  Doctors can re-certifiy every six months assuming the patient continues to decline.  I've seen people on hospice for three years or more.

There are signs that occur when a patient begins the active dying process.  They will stop eating and drinking.  They aren't hungry or thirsty.  Our bodies know how to die.  We don't need food or liquids once we start dying.  Pushing fluids can actually cause a lot of discomfort in a dying patient.  Another sign is sleep.  Patients begin to sleep most of the time.  Sometimes they can be awakened, but for the most part they are sleeping.  Breathing changes.  Skin color changes. They may begin seeing deceased loved ones.

The reason they don't want you to go to the ER is because once a patient is on Hospice, we take over.  If pain is not being controlled or your dad seems anxious, you'll call your hospice nurse.  We don't want patients to deal with the trauma of an ER visit.  It's just not necessary.  Most patients want to die at home, but that's not always possible.  If caring for your dad becomes difficult at home, he can be transferred to an inpatient facility.

Hospice care is about living, not death.  We want patients to be as comfortable as possible so that they can spend time with the people that they love.  I think our doctors, nurses, pharmacists, and CNAs do an amazing job of getting and keeping patients comfortable.  Hospice is a team effort.  You'll have all the medical folks involved plus social workers, grief counselors, chaplains, and volunteers.  Please let them help.  Take advantage of the resources available.  Oftentimes Hospice care is a marathon, not a sprint.

I'm sorry about your dad.  It's hard to lose a loved one no matter how old they are.  Wishing you peace as you begin this journey.[/quote]

OP here - thank you for this.  My father is actually in memory care at an ALF.  My mother lives at the ALF in an independent apartment, so she gets to see him frequently. I and my siblings unfortunately do not live locally and are managing this remotely for the most part.  I have a full time job and school-aged children which makes it difficult.  I appreciate you illuminating that it is a multi-faceted team effort.  We're just getting started on this process, and don't know how much time we have left to fully engage on all of these services but I appreciate the information.[/quote]

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