My intention in writing these posts is to share the experiences that I went through with my son, starting with the first manifestation of his illness and our journey through numerous subsequent episodes. It’s also to provide commentary as a parent and psychiatrist on issues that these experiences bring up, such as how the diagnostic process works in Mental health, and how to work with treatment providers and medication issues. My hope is that reading this may be helpful for people with Mental health issues and also their families and friends.
Like most public Mental health systems, Wisconsin’s Dane County had general hospitals with acute care psychiatric inpatient units as the general point of entry for the seriously mentally ill. For patients whose behavior couldn’t be managed there or who would require a longer stay there were the state hospitals: Mendota Mental health Institute and Winnebago State Hospital.
What was unusual in the Dane County system was the number and variety of less intensive, less-restrictive treatment settings. It is instructive to compare this set of services with what is available in other locales and to think what would be involved in improving services. These treatment settings included residential treatment facilities where patients could stay as a step down from hospitalization or while they were looking for a place to live; partial hospitalization where they spent time in a very structured setting with observation and monitoring; and licensed community care homes, which were alternative living facilities that dispensed medication.
This set of services had come about as a result of extensive lobbying efforts on the part of the Alliance for Mentally Ill (AMI), a group of parents advocating for their mentally ill children starting in the 1960s. The group tirelessly attended budget sessions to petition for increased funding. According to Nancy Abraham, one of the original and only surviving members, “It was a tedious process, tracking down where the meetings would be held, since the locations weren’t posted in order to keep the process more or less secret.”
The families persisted and with vigilance and determination got funding for an increasing array and number of services. This group evolved into a national organization, the National Alliance for Mentally Ill (NAMI), now the largest advocacy group for mentally ill. In addition, a significant boost in services was enabled by an academic collaboration with University of Wisconsin faculty members Leonard Stein and Mary Ann Test, who, along with colleagues, developed the Program in Assertive Community Treatment (PACT). This services grant, which received NIH funding, paid for many services in addition to those that Dane County provided.
The basic PACT model was one in which community workers treated patients where they were living rather than expecting them to come to community Mental health centers. In that model, patients also were taught and coached in skills of daily living such as laundry and grocery shopping. Further, when patients needed medication, including shots, team members would track them down and provide what was needed. By working closely with patients, team members were able to form supportive relationships that were part of the mechanism for keeping patients stable.
In most parts of the country these less-restrictive options are more limited or non-existent. Too often the only options are acute hospitalization or discharge to home or to the streets. For patients with severe mental illness this perpetuates the cycle of acute illness episode followed by minimal symptom resolution, followed again by acute illness episode and so on, repeat, repeat.
Trying to intervene long distance
I was apprehensive about the fact that Bill now appeared to be having somatic delusions or at least a heightened somatic focus, not uncommon in mania. “Are you sleeping OK?” I asked him.
“Yes,” he assured me, even though as his journal showed he had already started to sleep less.
“I’m going to call the Recovery House staff to let them know I’m worried,” I told him. I called to let them know that Bill seemed more unstable and asked if he could get some extra doses of medication. Although they told me that they would call the doctor providing on-call coverage, I later found out that he didn’t receive any extra doses of neuroleptics. As a family member, this is one of the most difficult aspects of trying to provide support: staying in touch but really unable to have a meaningful impact on the treatment course. This is extremely frustrating since the extra information to convey—that you know they’re hiding their meds, or they’ve mentioned hearing the voices again, for example—is vital information that informs or should inform the care plan. It also brings up family issues: Am I being too intrusive? Do I have the right to disclose information that my family member hasn’t given me permission to disclose? Will this damage my relationship with them? These issues all make the position of being on the sidelines and yet privy to critical information even more frustrating.