Hospice - an unexpected save

Last summer both of my parents were diagnosed with dementia. My mother’s is clearer (slowly progressing Alzheimers), my father’s seemed to come out of nowhere - and with a vengeance. Though my dad was diagnosed with moderate dementia, he refused additional testing.

What turned out to be a lifesaver is that prior to the dementia diagnosis, my dad had been hospitalized with a COPD episode. When he left the hospital AMA, he went home with hospice. Though he wasn’t actually dying and the hospice care stopped once and started again, it was the hospice that got us through the dementia.

Important to note is that he wasn’t in hospice for the dementia. That bar is too hard to reach, in order to be eligible for Hospice with dementia you have to be nonverbal. But COPD? Those eligibilities are much more generous and even after he was released, he was readmitted with the next COPD episode. After the second admit, they stopped trying to release.

My dad had both COPD and congestive heart failure, but neither of these were the challenge to care. The challenge was a fast moving dementia that moved him from independence to totally dysfunctional delusions inside the year. The last nine months were (from this caregiver’s perspective) traumatic, but possible to manage at home only because of hospice.

Hospice allows caregivers to treat behavior issues with combinations of Ativan, Haldol and Morphine. We started with Ativan when the issues were simpler, but added new drugs and higher doses as the months passed. My dad had the full dementia drama with paranoia and hallucinations and frightening sundowners, but Hospice was a phone call away and they kept plenty of meds on hand. At the end we needed professional home care (I can’t lift dead weight), but he was able to die at home with my mom beside him.

I write to share the importance of finding a way to get Hospice involved sooner. My brother (a nurse) was in close contact both with their family doctor and the local Hospice director. I don’t have a secret way in, only a recommendation to keep knocking on the door. Maybe your loved one has COPD or some other diagnosis that may qualify, maybe your family doctor has a connection. Truly, it was manna.