A weave of women hold together caregiving fabric in Mindanao

A tight huddle of women stays daily over at the kiosk by the tall steel gates of the House of Hope (HoH), Northern Mindanao’s lone 18-year-old psychiatric custodial facility.

The women are all hunched over portable looms, weaving strips of stretched fabric on the contraptions and looking like members of a chamber orchestra soundlessly strumming many-stringed square cellos.

Visitors to this facility, which has become home for me in the past three years*, have often wondered who they are. Could they be clients on recovery?Are they postulants of the Catholic congregation running this institution? Or volunteer artisans?

The women are called 'the watchers'-- caregivers keeping watch over their kin, making use of after-care free time by up-cycling old unwearable shirts into sturdy house rugs they could sell in trade fairs. The funds raised from the sales could buy essential anti-psychotics and anti-depressants for the facility’s poorest clients who otherwise cannot afford to comply with the dosages.

Recently, Aileen Duldulao, who has a doctorate in social work, deduced that women like them, especially mothers, are at the forefront of caregiving for the mentally sick in most families in these parts of Northern Mindanao.

A friend from way back, from almost another lifetime, two decades ago at the University of California in Berkeley, Aileen took a respite from public service work in Multomah County in Portland, Oregon in the US, and came here for a sojourn. After she met the staff, she was in awe of their uncommon commitment despite threadbare resources, a commonplace challenge in health care in a low-income country like the Philippines.

Instead of an earlier planned itinerary of sightseeing in the nearby resort island, Aileen devoted days and nights in a hide-away stitching together the enormous data among the two-year files of patients admitted and discharged in 2014 and 2015. She volunteered to do the study to evaluate the facility’s intervention program, the results of which later became the basis for forward-looking institutional plans. As an expert, she looked into the socio-demographic and treatment data of 89 clients at the HoH. In her report, she asserted that the sample provided an excellent overview of the characteristics of clients.

Epidemiology, Duldulao’s expertise, is the study and analysis of the patterns, causes, and effects of health and disease conditions in defined populations. “Epidemiology is the cornerstone of public health, and shapes policy decisions and evidence-based practice by identifying risk factors for disease and targets for preventive healthcare,” says the Wikipedia.

Among other findings, Aileen's small-scale study showed that sixty-eight (68) percent of those who were ‘significant others’ of clients are women. Mothers made up the bulk of these caregivers at 35 percent, followed by sisters (16 percent), aunts (5 percent), wives (five percent), and daughters (two percent).

On the other hand, male caregivers and significant others constitute a measly 17 percent, with fathers and brothers/brothers-in-law both at six percent and husbands at five percent.

In contrast, men, who mostly suffer from schizophrenia, outnumber women as clients at the facility, which is one of the only two residential centers of its kind in Mindanao, both serving a population of 14 million. During the two-year period, there were 63 males (71 percent) and 23 females (29 percent). Duldulao noted that this incidence rate follows global trends.

BREAKAWAY PRACTICE

The nursing staff have shared with me some background on the caregiving program of the HoH facility. According to HoH head nurse Julie Mae Maisog, in implementing the watchers program since 2012, the HoH had broken away from the traditional practice of hiring professional caregivers or interns to take care of the clients experiencing acute psychotic episodes, and instead requires a family to send a member to watch over one of their own who is weathering a psychiatric crisis.

Two in-house caregivers attend to the needs of a few mainstay clients who have never recovered but they are hardly professionals but were recruited due to their experience in caring for relatives and neighbors.

Duldulao soon learned that the breakaway practice hits two birds at the same time. It saves the family precious caregiver fees and at the same time provides opportunity for family members to learn caregiving lessons and thus be prepared for the eventual home care at the end of the recovery period when their loved one can go back home, a month or so after.

Senior nurse Cleinton Ubarco connected some threads to Duldulao's findings as he recalled that the social worker and nurses had pushed for the practice as it ''brings the facility closest to encouraging community-based care.''

Ubarco said that in the courses he has been taking for a masters degree, he has learned that practitioners in the field of mental-health care have been critical of the practice of committing the mentally ill in an institution for their entire lives.

Quoting Dr. Benson Go, one of the three psychiatrists in the city, Ubarco explained how these already frayed strings get unraveled further, that ''the longer a patient stays inside the isolation cell, the more difficult it becomes for that patient and the family to cope and re-adapt to each other and for the recovered ones to reintegrate and participate fully in the community.''

Discussing some of these epidemiological data with Dr. Dina Nadera, a psychiatrist and former mental-health consultant of the World Health Organization (WHO) on the Mental Health Gap Programme (MHGaP) in the country provided more insights. Dr. Nadera said that Duldulao’s analysis affirmed her own belief in the strong potential of the 64-bed HoH to provide effective psychosocial in-patient psychiatric care but still, she said, the HoH remains a facility, not community-focused, and that a community-based mental health care program should be embedded in the government's primary health care program and empowers grassroots communities to enable the reintegration of recovered patients.

‘’Of course, that is really largely cultural,’’ Nadera said about the preponderance of female caregivers. ‘’Our women as expected are saddled with the burden of caregiving.’’

‘’But with psycho-education for the persons living with mental health conditions themselves, the burden of caregivers can be lessened,’’ she said. ''Informed mental health survivors are able to take responsibility for their own wellbeing and can make options about their own health care,'' she added.

I thumbed-up (on) her remarks, because as an informed client myself who has embraced the experience of late-onset psychosis, I had been enabled to take the heddle and weft, to continue making living my own handiwork, thus freeing other family members of the backbreaking and mind-bending task of caregiving.

CONSIGNED TO THE BACKBURNER

Meanwhile, another medical professional rued over the data’s implications. “For so long, the wellbeing of mental health caregivers has been consigned to the backburner; it has never been a government priority, both nationally and locally,” said Dr. Dures Tagayuna, a surgeon and one-time hospital administrator who I had met as she sought for a post in the recent local elections.

Tagayuna added that “(It’s) about time we spearhead a program along with the plan for a gender-sensitive mental health plan not only for HoH but for the city as well,” she said, suggesting an information drive to make people be aware of mental wellness and prevention in the barangays.

She proposed to legislate for a massive campaign akin to that on breast cancer survivors. She added that the strategies for breast cancer awareness can be replicated in promoting mental health, she said. She added that women who hold families together as breadwinners must be encouraged to remain healthy or else they would burn out or succumbed to mental health conditions themselves.

On the national front, mental health advocates are now lobbying for a national mental health policy, the passage of which had eluded three generations.

The HoH management is aware of the risks of bearing witness, and conduct Sunday gatherings over a campfire at sunset by the coconut grove so that the caregivers mull over their travails as a temporary community, and relieve the stress and tensions through song, prayer and games. But, of course, all these are just swatches in the herring-boned patchwork of worn souls, for it will take time – and political will-- to put together that subtly comforting quilted blanket of self-care for women who care for their significant others.

*I am an outpatient resident at HoH, having been confined here after a psychotic break in October 2013. After my recovery and on the invitation of the HoH administration, I returned here as part of an experiment to provide support services for recovered individuals who have opted to pursue self-reliant, independent living. I participate in the routines of community life, particularly taking on the tasks of resource mobilization and advocacy for the human rights of clients and to combat the stigma and discrimination against those who have mental health conditions and their families.

My experience as a person with lived experience of mental ill-health and recovery is one of the threads that sew together my World Pulse narratives: At the future's edge a bounty of voices: https://www.worldpulse.com/en/community/users/libudsuroy/posts/25993 Snapshots From Hope: https://www.worldpulse.com/en/community/users/libudsuroy/posts/32878 Survivors of gender-based violence deserve mental-health care services: https://www.worldpulse.com/en/community/users/libudsuroy/posts/37563 Minding My Food, Minding My Mind: https://www.worldpulse.com/en/community/users/libudsuroy/posts/70300