I learned of Sacred Journey when my loved one was in the hospital. We were stunned to learn that she had a terminal diagnosis and wouldn't need her personal physician anymore. This was about managing pain and making her comfortable throughout her last days.
I was told Sacred Journey had residential as well as at-home hospice care. I was reassured that they could continue her physical therapy and speech therapy and that her supplies, medication & transportation from the hospital would be covered with no out of pocket cost. She has Medicare. I was completely won over when I learned about their residential facility that they stressed was 'not a nursing home.' It only had 12 beds and offered 24-hour 'respite' care for up to 5 days when weary caregivers needed a break. I could even stay there with her. It was an easy decision.
Positives:
1. Signup was a cinch. A helpful liaison met me at the hospital and walked me through the paperwork and patiently answered all of my questions, even the hard ones like what DNR (do not resuscitate means.)
2. The CNA was very caring, positive and kind.
3. They provided all of the hospital equipment such as a hospital bed and tray, wheel chair, depends, "chucks" (for leakage on the bed during the night) and a bedside commode. They even took care of delivery and setup.
4. They cover medications and deliver them to the house.
5. They are available 24 hours if you have a question and the nurse met with us the day we brought her home.
Negatives:
A. Staff:
1. We met the chaplain and social worker at signup and didn't see them or hear from them again. After calling, I learned they'd switched social workers. They recommend you use their doctor for efficiency but when I needed paperwork signed, it was easier to get in touch with the ER physician.
2. The on-call nurse who had to come over the weekend was hardly helpful. When I told her my loved one coughed and choked all night she said, 'get her some Bendaryl.' When I said she had no appetite, she said, 'sometimes I don't feel like eating either.' When I said that I needed a gait belt like the one she used for at home physical therapy through another agency because I could no longer lift her, she said 'any belt I own' would do.
B. Communication:
1. Information - Transportation wasn't covered from the hospital. I had to drive her myself or go through insurance which was exorbitant in our case for an ambulance. I was never informed they have volunteers who can come over and read. Also, I received contradictory information regarding her care. I initially asked for physical therapy because when she sat in a wheelchair in an unrelated 'rehab' for three weeks, she had to learn how to walk again by the time I took her home. I was now told that even walking to the bedroom would make her 'winded' and raise her blood pressure. So we didn't do physical therapy and allowed her to rest as recommended. But staying in bed made her develop a sore. They provided a special mattress pad that didn't help unfortunately.
2. Medications - Only meds that are hospice-related are covered. Ex. medications for dementia, Parkinson's or urinary problems are not covered. (FYI. A Medicare Advantage plan can help with out of pocket costs.)
3. Supplies - I was told that supplies would be covered. But when we ran out, we kept being told that this person thought someone else ordered them etc. And finally several days later I was told that we should have our own supplies at home as a backup. Would've been good to know before she was completely out.
4. Respite - their five day respite facility really sold me. When we needed it, I was told that they are booked up until November. Later I was told there is no respite facility, only a hospital for acute care if pain meds aren't working. They use nursing homes for respite.
5. Nursing Homes - there's no list provided initially. After inquiring, I was provided a list of 19 facilities they're "connected" with. Only two don't have a poor rating on US News and World Report. Their basic inspections cover Health Inspections, Staffing (hours of care received from staff), Medical Care Quality Measures (pain, bedsores, UTI's) and Fire Safety. One passing facility was in Riverdale, the other in Marietta. Neither had availability for respite and if we needed a longer term placement, we'd still have to deal directly with the facility regarding the financial part so there was no benefit.
6. My loved ones condition worsened. I didn't get adequate assistance regarding residential placements and they wouldn't cover transportation to one even though she was still under their care.
7. There is no discussion regarding funerals or aftercare. After my loved one passed away, the only communication we received from Sacred Journey was regarding getting their equipment back.
In short, I would not recommend Sacred Journey. Research hospices early, before it's an emergency and don't forget self-care. read more