I got a phone call at work. It's the kind that lingers long after you hang up the receiver.
Maria Forest and her husband, Joe, were looking forward to retirement; until their world turned upside down. First, the company where he worked for 33 years, went belly-up a year after he retired; he lost his pension. Two years later, he got a diagnosis of Amyotrophic Lateral Sclerosis (ALS).
No one expects that; they were understandably shocked and insecure. He stayed at home for a while; then landed in the hospital because it was difficult to breathe. Hospital staff, 50-60 miles from their home, decided he needed to convalesce in a nursing home, close to his wife. Maria, not knowing what to expect, agreed.
The man she left at the hospital was not the man she saw in the nursing home just 24 hours later. Joe, in one day, became despondent, weaker and his speech less intelligible. He begged to come home. Maria wanted to bring him home, but didn't know if she could care for him. Besides, she didn't have a respirator and didn't know how to get one.
Within a month Joe was back in the hospital. His central line port was infected and he developed a urinary tract infection. He begged his wife not to send him back to the nursing home. It was the only thing he wanted... to be home for Christmas and to die there.
Maria and Joe started looking for help. The hospice program said they would come in and help Maria care for him. All they needed was to get that respirator. The hospice program suggested she call their local center for independent living's reintegration program, a Medicaid waiver program set up to help people get out of nursing homes.
The person on the other end of the phone was all ready to help; until she found out he was 63. "I am sorry," she said, "this program only goes to age 60." She provided no more information about how Maria might get her husband home for Christmas.
Maria called the doctor who had been caring for Joe. She asked him for a prescription for a respirator, so Medicare would pay for it. The doctor told her, "Sorry, that's out of my territory." Out of his territory? What the hell does that mean? He made no recommendations about "in-territory" doctors.
I'm not sure how she got my work number; probably somewhere in the dance I call, "The Social Service Shuffle."
If you've ever tried to secure services, you have danced this dance. It's like square dancing, only in a straight line that goes absolutely nowhere.
You dance with one bureaucrat and then get passed to another, then another, then another... Each person is perfectly nice, dancing in step, until you hear "You don't fit our criteria." Now it's time to move on; as you leave a particular partner, you get another phone number to call.
Initially, Maria's thoughts were clear; but the system put her in a tailspin. By the time she called me, she didn't know how to tell her story or explain what she wanted. Most people have to tell their story from the beginning... especially those in crisis. They don't have the ability to synthesize and analyze what's happening to them.
As the story unfolded, I said, "You've been working really hard to make this happen, haven't you?" She had no words... she was crying on the other end of the line. Slowly, we deconstructed her story and returned to the need for a respirator prescription.
Remember Joe's , "it's not my territory" nursing home doctor? Maria is pretty sure he is part owner of the facility. Apparently, his "territory" covers what will line his pockets.
I told her there was a doctor at the hospital that was overseeing his respiratory care. I encouraged her to call the hospice and ask them to get the doctor to write the prescription. I gave her my name, spelling it all out, and phone number. I asked her to call me back if that didn't work. No more phone numbers. The shuffle stops here.
It is her question, that lingers with me still. "It's all he wants... to come home for Christmas and to die here. Why can't I make it happen?"