Because the Mansion is a Medicaid residence, not a hospital or nursing home, state and federal laws prohibit hospice or for drugs to be administered by the aides.
Unlike many private facilities for the elderly, there is no special room or floor where people can die, when the residents get sick enough, they are taken to nursing homes or hospitals, that is where they die.
This reality – the Mansion would love to keep its residents for the rest of their lives – shapes time and meaning at the Mansion, in a sense, everyone is transient, everyone will leave and go to some strange place to die.
The system makes no sense to me, I haven’t met a resident yet who didn’t wish to spend the rest of their time at the Mansion.
I heard the residents talk about one other resident who was sick but refused to see a doctor or seek any kind of treatment. She wanted to die in her bed at the Mansion, and she did. She never spoke of her illness or admitted having it, or took any pain or other medicine for it, so goes the story.
I can’t say if it is true or not.
Birthdays are always celebrated at the Mansion, but I rarely hear the residents speak of them. Alice had visitors and birthday party at the Mansion today, she had a birthday balloon tied to her walker.
I’m not sure the residents would vote to celebrate birthdays if they could.
The balloon bobbed back and forth in the breeze, bouncing lightly from the walker to the door. I think Alice loved this spot.
I invited her to play Bingo but she was too tired, the aides helped her to sit by the open door and catch the gentle breeze. I sat with her for a few minutes, but she was too tired to talk for long, I left her to sleep. Before she nodded off, I asked her how old she was, and she just shook her head.
She did ask me if my dog was coming.
Not tonight, I said.
This makes me very sad. I have worked over 33 years caring for the elderly and the younger mentally ill population. I am retired now. Took early retirement at 53 because of an auto accident, not my fault. Took me many years to heal, physically and emotionally. Jon, I love the work you are doing, you make a difference. My husband and I wanted to give back to those who need us the most. We have finally been able to do that with our newly certified therapy dog. We went through 8 months of training with our border collie and followed all the rules to be certified, she is 15months old, it was so important to us and we did it. The 3 of us are a team, its our ministry and we love to go the elderly, physically disabled, and the veterans. Keep up the good work Jon, those of us who share with others we are the ones who are blessed. Everyone needs to feel loved and they need to give love and our dogs help. Animals bring out the best in all of us. We share in NJ and Florida. The Mansion looks like a beautiful place. Keep up the good work you and the Army of Good. Thank you for sharing with all of us, your writing opens up a different world that most people do not ever get to see or experience, sometimes its not always pretty but we all can do something for someone to make it a little better. God bless you and Maria. Dee
Such a very poignant picture, Jon
OMGosh Jon. Thank you for sharing the sad situation that NY assisting living facilities (ALF) are not considered a resident’s home where they can receive hospice care. This needs to change! In a former life, I was the director of an ALF in Alaska. A percentage of our residents were Medicaid recipients. Any of our residents that wished to remain in their home, the ALF, and receive hospice care, they could and Medicaid or Medicare would cover the services. I now live in WA and am a hospice respite volunteer, where I often provide services in ALFs. Changing NY laws to provide for aging and dying in place is a campaign worth supporting. Thank you.