Our last visit with Dr. Gorsuch at Cone Cancer Center left us in the position of calling for an appointment and for any symptoms that arose. We were okay with that but, as we got further away from that last appointment, I felt like Angela needed something more.
Angela made some decisions around Advanced Directive type issues. We know she doesn’t want “heroic acts” and things like feeding tubes and being intubated. Those, as we understand, are all the worse if it’s decided to undo later. And, I was getting a little concerned about how we would handle any symptoms that might worsen. To the extent possible, we didn’t want to involve the local (rural) community hospital in an emergency and don’t want her final time on this Earth to be in a Hospital.
In addition to all of that, I’d had the good fortune, through my marketing consulting company, to work with another Hospice in the area and learn about what they do. All of these concerns and experiences drove us to reach out to the local non-profit Hospice, Hospice of Randolph County.
When to Call In Hospice
Truthfully, we are chronic planners. She and I both want her to have a voice in her care and how some things might happen in the future. Knowing full well that we can not control it. But, at least have Angela’s wishes known. Hospice is one way we can influence her future care.
The Hospice Appointment
We went to an appointment with a staff member where she explained Hospice services. We also got to see a room at the local Hospice House. All in all, we walked away with the impression of a very nice facility and thoughtful staff and that some of our medical concerns would now be covered by more than just a telephone call.
Before we left Hospice House, the social worker gave us a hug. During the course of our goodbye, the social worker surprised me when she said that she “wished her husband would be more like me”. Not exactly sure what’s going with them. Possibly, how we as a couple are approaching this phase of the journey and the decisions Angela has made so far. The only thing I could reply with as we were walking off towards our car was, “better work on getting him in line!”
The First Hospice Home Visit
A few days later another social worker and nurse from Hospice came to our home to “admit” Angela. They were very nice. We talked about our journey so far, how our daughter was doing and they took an inventory of what medicines Angela was taking. They seemed intensely interested and compassionate toward where we are now along this journey. They explained that in addition to the prescriptions (all covered under Hospice) we would receive a “comfort box” a box of medicines to be used under various circumstances. The comfort box is stored separately from the current medications.
Second Hospice Visit: Nurse
Within five days of being admitted a nurse arrived at our house to take a more detailed history, get some baseline vitals, answer questions and talk through our journey so far. The nurse remarked that she doesn’t get to see patients upright very often, that surprised us in some ways and was partially responsible for motivating me to write this blog post.
Delivery of Medical Equipment
About a day after our nurse visit, we received the ordered medical equipment. They order it ahead of time, so it’s there whenever you need it. This avoids waiting if you are in a situation where it’s needed.
Misinformation About Hospice
There is a lot of misinformation around Hospice. The main one is that Hospice is exclusively for the final stages of life. This is simply NOT the truth. In fact, Hospice is there to make daily living as comfortable for as long as possible. It’s true that Hospice is only for those with a diagnosis from the doctor of 6 months left to live. But, many patients live beyond six months under Hospice care and have their coverage renewed.
What is Hospice?
Hospice care can and be divided into two categories of care. At Home Care and Hospice Facility Care.
At Home Care includes:
- People: a Nurse, CNA, Social Worker, Chaplain, and Volunteers. Any combination of these people is available to come to your house and help in any way possible. For example, CNAs are available to help with showering/bathing. Volunteers are available if caregivers need to leave the house to run errands and the like.
- Equipment: durable medical equipment like oxygen, suction machine, hospital bed, shower seat and the like are available to help the patient make everyday life easier.
- Medication: any medication related to the disease and/or that can bring comfort is covered by Hospice are shipped FedEx direct to our home
Hospice Facility Care includes:
- General Inpatient Care – General Inpatient Care is for the management of a symptom that can not be managed at home. It’s possible that a patient admitted for under General Inpatient Care, could be released from General Inpatient care once the symptom resolves itself or, can be managed at home. General Inpatient Care is much like hospital care. General Inpatient Care is also for when someone is actively dying.
- Residential Care – Residential Hospice Care places the patient under the care of Hospice. Most health insurance plans don’t cover the daily charge for room & board portion of Residental Care. In the case of our local non-profit hospice, residential care is charged on a sliding scale based on income. Residential Care is for those that are not actively dying but are needing help with care like someone who may not be able to care for the patient at home when they get bed bound. Another choice when considering alternatives to Residential Care is to hire a Home Healthcare Aide to supplement caregiver care.
- Respite Care – Respite Care, limited to five nights maximum, gives the caregiver a break. The patient would be under Hospice care for this time and returned home once the five nights is up. As an example, some families use Respite Care if another family member got the Flu and wanted to reduce the chance the patient might contract it.
We continue to make the most of each day and enjoy as much we can with family, friends and experiences.
If you’d like to help Angela as we continue her journey, please donate here.
Hospice at home was difficult for us. Ultimately I was happy when we relocated to hospice proper, even if it was only for a couple days.