This was a horrible experience. I sent 2 separate emails about my concerns and one final email to disclose my grievances.
On Friday, May 26, my family decided that hospice care at home would be best for my grandmother so she could leave us in comfort and dignity. Later the same day, my mother received a visit from Erick, the Director of Counseling Services, and he explained what hospice entailed. He painted a pretty picture and put my mother at ease.
That same day we were supposed to receive the necessary equipment for her care. There were unexplained delays, so we did not receive the equipment on May 26. Instead, the equipment did not reach our home until May 27, less than an hour before my grandmother arrived from the hospital, as a family. To top it off, we were never provided clear instructions on properly using the equipment. A nurse did not show up until Sunday, May 28. The nurse was friendly and provided an overview; However, nobody ensured my parents understood what to do.
Another staff member came to our home on May 29. The staff did an inventory check of our supplies. We did not receive instructions on how to use the Albuterol or even advice on what to do if the mask was not a fit for my grandmother (I had to google). I kept asking about my grandmother's bed sore, and the staff ignored me to check medications. Ultimately, she checked my grandmother's bed sore and told us she would send us supplies. I had to look up how to treat it. The staff didn't know anything about the oxygen levels my grandma was supposed to be on. The staff said that she didn't need both oxygen machines on, but this was in direct conflict with what was told to us prior, having both machines running.
Why would someone be discharged from the hospital without a medical action plan? Why wouldn't the staff at the hospice agency not ensure that, as a family, we were well equipped and knowledgeable on the treatment we as a family were supposed to provide my grandmother?
As a family, we made calls to the emergency line. They returned our calls within 20 minutes, but there was not much the phone line could do.
On May 31, we called and requested a nurse to visit and reassess my grandmother because nobody had kept us up to date on visits, and we noticed a sudden change in my grandmother's health. Elena came as soon as she could; that was the first time we felt heard and seen.
If Active Hospice was unable to staff my grandma's case or we were out of your catchment area, why take the case? The amount of time we had to wait was unacceptable.
Then there was the social worker, who did not make contact until June 1, when my grandmother passed away. One of the essential functions of a social worker is to provide linkage to the family to ensure we are prepared for what is coming. My family and I were polite to her visit when my grandmother finally passed away on that same day. However, she never took the time to develop a rapport with us. Her visit did not provide us with any type of solace. However, we took her lead in providing my grandmother's body with a sponge bath and a change to her wardrobe.
All my grandma wanted was a bath, and Active Hospice did not schedule a staff member to arrive. It was the agency's responsibility to cover that shift. If no personnel was available, efforts to outsource staff that shift should have been made. We kept telling my grandma we couldn't bathe her. We had to wait. She took such great pride in her hygiene that we couldn't even do that for her. This pained her and the family greatly.
What I would have liked to see from Active Hospice is ensuring we felt empowered to take on this great feat. The binder should have had printouts with instructions about the equipment, such as the Abulterol and the oxygen machines. The binder should have had an action plan for providing care since the family is the one doing most of the care. Lastly, Active Hospice should have provided better communication and linkage between the agency, family, and patient. In the end, we did not have a circle of support. In the end, this agency prevented my grandmother from leaving this world with dignity and comfort due to this substandard care. read more
