I'll never forget being in the hospital at Stanford and again at Cottage Hospital in Santa Barbara and our social workers mentioning that we consider going on hospice. Despite Gwendolyn's condition being terminal and the fact that we were completely, utterly lost on how we were going to make this all work, I still didn't think that we were anywhere close to being ready for THAT — hospice. Looking back, my preconception with what THAT was couldn't have been further from reality — at least our reality with Visiting Nurse and Hospice Care of Santa Barbara (VNHC).
Initially, our biggest fear with hospice was that we were somehow “giving up” — that we'd be forced to change our philosophy on Gwendolyn's care towards being more palliative. Or that we'd be forced to change Gwendolyn's doctors. Or that we wouldn't be provided the same care opportunities. In our experience, that isn't the case at all.
Absolutely nothing has changed since starting with VNHC and we actually feel that Gwendolyn's level of care and medical attention has increased as a result. Gwendolyn is still seen regularly by her local pediatrician, the same pediatrician that we've always seen, and she is still under the care of her team of Stanford doctors (pulmonologist, neurologist, nutrition, gastrointestinal) — we actually went through the sodium phenylbutyrate clinical trial at Stanford while on hospice.
We have a dedicated VNHC registered nurse that comes once a week to examine Gwendolyn and check-up on our needs, an occupational/physical therapist that comes twice a week — all to our house, which is a huge benefit for us. We also have a dedicated spiritual counselor and social worker who visit us in our home regularly and have been great resources for us through this journey. We receive respite care at least once a week from a dedicated nurse and we can call a VNHC nurse 24 hours a day if needed.
VNHC also manages our durable medical equipment and day-to-day medical supplies — a job in and of itself — and provides Gwendolyn's formula and pharmacy needs. Again, all of these are delivered directly to our home. VNHC has also purchased Gwendolyn's ankle-foot-orthosis' (AFOs) and helped us purchase Gwendolyn's new wheelchair stroller.
Yes, palliative care is one aspect of hospice, and in our opinion a very important one. But our care through VNHC to date couldn't be further from palliative. And, although we were unsure of this aspect in the beginning, it is comforting for us to know that if and when we feel Gwendolyn needs palliative care, it is there — and it will be provided by a team of professionals with whom Gwendolyn and we are now fully comfortable.
Looking back, our decision to put Gwendolyn, and us, under the care of VNHC was a turning point for us in this journey. Now, 7 months after making that decision, I couldn't imagine not having considered THAT as an option to guide us through this difficult process.