Catholic caregiving blog — President’s day

We discussed sorting through the piles of paperwork in the apartment today, and touched on the Advance Directive, which Ruth has not filled out.  She said Alex and Max were her proxies, and I asked did they know what she wants? She started to answer and then broke down…I said sorry, that was insensitive, I am usually so cold-blooded about this. Then when she composed herself, she talked about not wanting to be kept alive on machines if there was no hope of recovery, for instance if she had surgery and it went wrong, or if the course of the disease made any quality of life unlikely. But if there was hope of recovery and quality of life, then yes, she would want to be resuscitated. We will revisit and fill out the forms before I leave. Clearly she has been thinking about her death, though, and is disturbed by it. I cannot imagine confronting death, as she is doing, without a coherent spiritual or religious framework.

Praying the joyful mysteries today I stopped trying to make something happen and had the humility to just pray before the mystery of of the miracles of the Annunciation, the Visitation, the Nativity, the Presentation, and the Finding of Jesus in the Temple.  Such extraordinary events, and we make them so routine and ordinary and forget the miracles.  Without prayer, my life would be a mire of misery, so I am extraordinarily grateful.  After spending the day inside, Ruth and I went for a cruise outside around the dogpark. The weather was mild and pleasant, the squirrels bustling around, birds declaiming whatever birds declaim. We checked out the daffodils just emerging from the still chilly soil, and were grateful for the companionship and fresh air.

Today I actually managed to do quite a bit of work — edit the letter from Willem, Lukas, Liliana and myself, have a long talk to Sophia at ADF about the Dignity Campaign, finish the blog on palliative care, and do all the necessary emails.  I also talked to Willie and Victoria about the caregiving/visiting arrangements when I return to Europe at the beginning of March.

 

Catholic Caregiver blog

Reading Dorothy Day’s “Duty of Delight” yesterday inspired me to keep this journal of caregiving for Ruth and the spiritual struggles that accompany such caregiving.  First, the practice entails giving oneself away kenosis, and practicing patience, which Catherine of Siena called “That royal virtue, that lovely virtue that is never scandalised or shaken or toppled by any contrary wind or by any diabolical temptation.” (Letters) All the challenging people, she says are “instruments of virtue and progress toward perfection” who help  us acquire patience.  I was absurdly pleased when Ruth said to me the other day that I was “very patient.”

I did lose it yesterday though, when after she had fallen in the hall in her effort to go to the bathroom by herself, and had to be dragged feet first back to the bed since I could not pick her up,  she then she attempted to do it again.  As if she had forgotten how challenging and frightening it was to try and get her up by our combined effort and strategy.  I told her I realised she needed to be independent, but that she was being inconsiderate to do this to me again.  Then I wondered if the dementia is beginning and whether she forgot that she had fallen and had to be dragged across the floor with a pillow under her head to keep it from banging with every step.

I prayed for forgiveness and fortitude, and had a rough night continually reminding myself to take refuge in the Lord, because by myself I am entirely powerless. And then I was rewarded this morning with the sight of her sitting up in bed when I went in to check on her before prayers, saying she had a good night, and speaking without a slur. “The Miracle of the Brain” she said.  Mswela thinks it might have been a small seizure. We had watched some of a news program on the topic of the brain the other night.  Apparently there are not enough brain donations for scientists to do adequate research.  Ruth said she was donating all her organs.  Today’s readings are the Beatitudes.  Love even, or particularly, when it is difficult, with no hope of reward.  I found a new website. https://www.catholiccaregivers.com/

I put on a load of laundry, made soup from the juice pulp, sweet potatoes and shitake mushroom stalks, and took out the trash.  Will try to get a bit of work done.  At least yesterday I got my SDG papers in for the Stakeholder Group on Ageing.  Now I am living the journey.  Ruth fell again while I went down with the trash. It was my fault for leaving the bath seat in the way. Eve and I got her up.

Went to Mass at Mary Queen of Angels.  Beautiful cathedral, nice enough service. Tentative sermon on non-violence by the deacon.  Came home to find Max and Vanessa and the girls here enjoying themselves and Ruth holding court.  It had been a successful outing to Karma’s. Max had brought some delicious octopus ceviche, and they liked my soup with smoked paprika. I had a nice talk with Pablo and Dede and will call the other boys. It is important to keep up family and friendship ties for caregiving to go well.  Isolation would be a fearful thing.

 

 

 

 

Palliative care for Papua New Guinea: A profile of Sister Tarcisia Hunhoff for World Day of the Sick: Feb 11, 2017

World Day of the Sick is a Feast Day of the Roman Catholic Church, instituted by Pope John Paul II in 1992 at Lourdes. In 2007, Pope Benedict XVI used the occasion to call for more palliative care for the sick and the dying. Sr. Tarcisia Hunhoff, a member of the Missionary Sisters, Servants of the Holy Spirit, has heeded that call, and having “retired” after her 80th birthday, will be setting up the first palliative care center in Port Moresby.

Sr. Tarcisia’s religious order has been in PNG since the turn of the 20th century, and she has worked there since 1960. When the HIV epidemic exploded in the early 2000’s, she devoted herself to the counselling, testing, training of health care workers throughout the country, traveling several times to Africa to learn about how countries there were handling the epidemic.

A former Dutch, German, British, and then Australian colony with an active slave trade during the late nineteenth century, Papua New Guinea has the highest rates of HIV infection in the region, with escalating rates of TB, HCV and sexually transmitted infections. These public health issues flourish in a post-colonial society plagued by gender based violence, teen pregnancy, and a poor healthcare system. Sr. Tarcisia says, “That’s the situation in a nutshell. It is quite as distressing as it sounds.”

Like young people everywhere, PNG youngsters are searching for a better life, especially in Port Moresby, the capitol, which like many modern cities, is a magnet for urban drift marked by social disintegration. Sr. Tarcisia says, “We find our HIV/TB patients, often totally neglected and left alone to die, in the city and its outskirts. Catholic Health Care Services provides counselling, testing, and ART for over 70,000 clients a year, and has a very effective mother-to-child prevention program.”

Yet with so much life limiting illness, PNG has no palliative care facility. Palliative care, a relatively new medical specialty that seeks to improve the quality of life of patients and families with serious illness, was almost unheard of until Sr. Tarcisia approached the Department of Health with this new idea for total care. Palliative care includes pain and symptom relief, as well as social and spiritual support when cure is no longer an option. She says, “The idea for the proposed Palliative Care Centre in Port Moresby grew out of utter distress of being unable to do what needs to be done for these neglected and stigmatised human beings, lying on the floor in a corner with no basic care.”

It has taken her some years to get started with the new building, called “ The Supportive Living Project,” because of the cultural belief in evil Sprits of the Dead, which is still very strong in PNG. The Australian Government has provided AUS $3.5 million for construction, and the PNG Department of Health will finance staff salaries and clinical supplies. Building Board permission is in the pipeline and expected any time.

Sr. Tarcisia says, “I consider this my last project since I have passed my 80th Birthday. I can only hope and pray that the Centre will be a model program, and that palliative care receives the emphasis and the finances it needs. Asked about palliative care and faith, she responds: “serving the poor has been a very rich experience for me personally. One receives more as one gives. I also hope it makes it clear to our simple people what Christianity is all about. Pope Francis is a strong advocate and knows from experience what it means to live in a desperate situation.”

I would like to thank you for promoting total care, especially to the poor and underprivileged.

Best wishes and God bless, Sr. Tarcisia, Hunhoff SSPS

Setting our faces toward Jerusalem

Today I was in bits reading the news about our US President’s ban on individuals from specific (Muslim) countries entering the US, even if they were US citizens, or held legal immigration status. My social media feeds are outraged. The fact that the administration announced it on Holocaust Remembrance Day made the order particularly ominous.  Several federal judges have already blocked the order on grounds of unconstitutionality, and there have been large demonstrations at international airports around the country where citizens and residents are being illegally detained.

This feels like a constitutional crisis.  It feels like the period before the Third Reich consolidated power, when many thinking people could not believe what was happening, that the situation would blow over, etc.

What particularly undid me was a photo I reposted on FB, a poster that read “First they came for the Muslims…not this time motherfucker!”

I don’t know if everyone will get the reference to Brecht, or to Martin Niemöller but I grew up in post-WW2 Europe always wondering how I would react if I had been faced with the moral choices that the Holocaust presented to ordinary citizens. The “this time” in the poster I shared says that some of us at least learned the lesson, and will resist. That feeling resonated with who I am now, a christian called to give up her life for her friends, who prays for the courage to do just that. I am called to witness, we are called to witness, and turning away makes me guilty of the crimes against mercy, or at least an accessory. 

It was no accident that today’s readings (fourth Sunday in Ordinary Time) were from Psalm 146-7: “The Lord loves the just/the Lord protects strangers,” and Corinthians 1:28 “God chose the weak of the world to shame the strong, and God chose the lowly and despised of the world, those who count for nothing, to reduce to nothing those who are something,” AND the Beatitudes.  Slam dunk.    I have great role models — Fr. Maximilian Kolbe, Dietrich Bonhoeffer, Edith Stein, Alfred Delp SJ and many other christians who could not remain silent when gospel values were systematically violated by the state.

dietrich-bonhoeffer

Fortunately, inspiringly, some church leaders are speaking out: Pope Francis and Fr. Jim Martin, SJ to name only two. I trust that US religious leaders are planning an ecumenical rally at the Capitol to protest this scandal and remind the administration about the law of hospitality. I was just listening to Congressman John Lewis, veteran of the violent US civil right struggles, telling Krista Tippett that the march from Selma to Montgomery was “love in action. We do it not simply because it’s the right thing to do, but it’s love in action. That we love a country, we love a democratic society, and so we have to move our feet.”

Moving our feet can also involve dancing, as Rumi sings: “Dance, when you’re broken open. Dance, if you’ve torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you’re perfectly free.”  So we march, we dance, we write, we mourn, and are blessed in so doing, according to today’s readings. Continue reading Setting our faces toward Jerusalem

Reducing harms of ‘harmless’ pleasures

My effort to learn as much as possible about international drug policy brought me two interesting films last week, “Sicario” and “Cartel Land.”  The following reflections are based on what I got from those films: first, both made it clear that people in high income countries who use illicitly produced and trafficked drugs recreationally (non-problematically) are accessories after the fact to drug war violence/harms in producer and transit communities, including urban neighbourhoods. Engaging in political action to promote decriminalisation and regulated access to what are now illicitly sourced psychoactive substances could be a powerful form of drug user harm reduction. Supporting civil society activities in countries where CSOs are weak or repressed, while personally boycotting illegally sourced substances altogether until goals are achieved, is another. People are more than just consumers (of all commodities, not just illicitly trafficked drugs); they are also citizens enmeshed in a global political economy that creates public bads as well as public goods.  And ethical consumerism must extend to our all our pleasures.

The harm to be reduced arises from the illicit drug market, or ‘state of nature,’ where personal security is non-existent, and life ‘nasty, brutish, and short.’ Such is the existential context of producer and transit environments. When governments themselves cannot provide security for their citizens, the state of nature prevails, and people must defend themselves in the “war of all against all,” until a new “sovereign” emerges to protect them.

The invisible hand of the market created by recreational and problematic users in high income countries generates these violent parallel “states” [of nature] in producer and transit countries where governments are weak and often illegitimate. The law of the strongest and best supplied — Thomas Hobbes’ war of all against all — co-exists alongside the laws of governments selected by citizens via elections, or appointed by military coups.

Their social contract duty to protect citizens renders governments that tolerate, let alone profit from, the existence of parallel states, liable for drug war damage to their own citizens, as well as to citizens of other states. Governments and agencies that fail to protect forfeit domestic obedience and legitimacy in the international community.

Other narratives of transnational ethics of solidarity and mutual aid, which can provide protection for vulnerable communities, are possible. The Michoacan self-defense forces in the documentary film “Cartel Land” did exactly that at first, providing security for communities ravaged by cartel violence and unprotected by official forces. “There is no government. The government is often working with the criminals,” said the people. Citizens in towns that were not so hard hit, who continued to believe in the state, took the opposite perspective and refused to join the Autodefensas, saying “If we don’t believe in the institutions of the state we are finished as citizens.”

Members of drug policy reform organisations in the high income countries can act as responsible global citizens by acknowledging their consumer communities’ partial complicity in the cycle of violence.  Civil society organisations that take responsibility for their part in strengthening the “invisible hand” of the market for illicitly trafficked substances can work authentically to end the cycle of violence. After all, it is demand from the rich countries that keeps the cartels in business and the state of nature flourishing.

Taking an ethical/political stance doesn’t mean playing the blame/victim game or stigmatising people who use drugs, but acknowledging  responsibility for consumer habits that expose “bystander” individuals and communities to cartel violence and government repression. Those vulnerable ‘other’ communities are found in what Latin American theologian Jon Sobrino SJ calls “entire crucified continents”.

“Cartel Land” drives home how ordinary people, usually poor people, pay with their security, peace of mind, and their lives, to satisfy the northern hunger for their products. Participating in consumer advocacy initiatives to change repressive drug control laws that benefit the cartels would be one way recreational users could take responsibility, pay for pleasure bought with blood money.

Media induced hype about the so-called “opioid abuse epidemic” in the US, Canada, and Australia, is already damaging patients and families in countries with low to no access to medical opioids for pain and palliative care. The exaggerated threat posed by prospect of widespread non-medical use of opioids now supports governments’ unwillingness to identify and remove barriers to legitimate access, making advocacy much more difficult.

Organisations in high income countries with strong civil society sectors can campaign to pressure governments to reduce the harms of the drug war and support NGOs in countries where they are weak or suppressed. They can also facilitate inter- governmental and UN agency collaborations for good public policy outcomes, requiring political appointees and bureaucrats to step out of institutional comfort zones.

Advocacy means active and responsible participation in institutions such as the Civil Society Task Force organised for UNGASS2016, and hopefully set to continue until the next drugs UNGASS in 2019. The CSTF can remind governments whose citizens use illicitly sourced drugs either recreationally or problematically, that they have a duty of care to support evidence-based policies that reduce the harms of such use. Policies include decriminalisation, prevention, treatment, harm reduction, reintegration services, and the rational use of controlled medicines for the treatment of pain and suffering.

Governments that promote hard line, exclusively supply control, drug policies at the UN, clinging to the largely fractured “Vienna consensus,” and boycotting the health and human rights based approach promoted by the Geneva institutions, claim to be “protecting” their citizens from these parallel governments. As they are often besieged from within and without, such governments use their monopoly of “legitimate” violence to suppress the trade, failing to produce the desired effect while generating multiple harms. One way to diminish these harms is to build the capacity of civil society organisations (CSOs) to hold governments accountable, an approach that does not appeal to countries ruled by precarious elites.

Nation states and drug cartels are not the only powerful institutional actors in the international community. Transnational civil society networks can also be powerful, which is why some member states discourage them. Member states that favour moving away from exclusively militarised solutions to the world drug problem, could contribute to the emerging public health paradigm by supporting capacity building for CSOs in countries where civil society is weak and in need of support.  And let’s take ethical responsibility for our guilty pleasures by committing to harm reducing political advocacy at the local, national, regional, and global levels inter alia! 

meth cooks

Sturm, Drang, and the Busted Drug War Consensus: The Decline of International Law

Sturm, Drang, and the Drug War. The Decline of International Law Katherine Pettus, PhD There is a great deal of Sturm and Drang afflicting the leading lights of the drug policy reform community at …

Source: Sturm, Drang, and the Busted Drug War Consensus: The Decline of International Law