RSS Feed

AKU play ‘Main Bhool Gaya’ highlights dementia problem

Published: January 31, 2018
Plays like these are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society. PHOTO: COURTESY AKU

Plays like these are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society. PHOTO: COURTESY AKU

KARACHI: Dialogues interspersed with laughter from the audience at Aga Khan University’s packed auditorium on Monday while watching a play on dementia. Watching attentively, there were many moments of silence where audience found itself relating to the pain of having seen a loved one go through the ordeal of dementia.

The play, ‘Main Bhool Gaya’, was created by Patronus Theatrics, which is a production group run by students and faculty of AKU. It was aimed at raising awareness about dementia and the story showcased a family’s struggle in caring for an elderly father suffering from the disease.

Dementia is a disease that mostly affects the elderly, but can also be triggered due to other factors or ailments. It can often go unnoticed by family members and health professionals in Pakistan. Often, the signs of dementia are misconstrued as being ‘a normal part of ageing’.

Patients of dementia forget not just words, but a sense of time and whether they are in the past or in the present. As it is a progressive disease, the patient starts forgetting basic physical functions overtime.

While it is painful for the patient, it is equally difficult for the family and caretakers who often do not understand how to handle the situation. The play portrayed how a family struggled to tackle the issue, particularly the daughter who was most sincere in her service to her aging father.

AKU Department of Family Medicine Associate Professor Dr Saniya R Sabzwari was the executive producer and wrote the script, along with Kumael Azhar and Ibrahim Sajid. At the end of the play, she expressed the importance of spreading awareness about dementia.

“Humourous moments have been added to the play to give the audience a breather,” said Dr Sabzwari, explaining that the topic of dementia can be depressing.

The play was directed by Sunil Shanker with Maeen Abbas as the student director and Kaleem Ahmed as the student producer. The actors received a thunderous applause at the end, particularly Azhar, who acted as Colonel Haidar, a man who began to forget who he is, yet was kept company by a younger version of himself in his world of alternative realities.

Dementia, as the play highlighted, is not just about ageing, but is a disease that needs to be understood, as does the plight of both the patients and the caretakers. Plays like this are integral in raising awareness and educating society about the care of the elderly and creating a more inclusive society.

https://tribune.com.pk/story/1622135/1-aku-play-main-bhool-gaya-highlights-dementia-problem/

Advertisements

Knowing the perpetrator of Child Sexual Abuse

 http://tns.thenews.com.pk/knowing-perpetrator/#.WqJhO-hubIW

There is no single profile for a perpetrator of child sexual abuse

Knowing the perpetrator

He is a normal-looking person, leading a seemingly normal life. His eyes are not crazed. He is not unkempt. He has a job and has normal social interactions. There is no apparent sign of a mental disorder. Yet a dark secret lurks behind the shadows — he is a child sexual abuser. There is no formulaic profile that fits a perpetrator of child sexual abuse. There is no way even an adult can identify him or her, leave alone a child. Seven-year-old Zainab of Kasur fell prey to one such felon whose crime remained invisible till Zainab was found, albeit too late.

As Pakistan grapples in the wake of this shocking incident, it is time to raise awareness not just about the crime but also about the criminal who is often imperceptible.

“There is no single profile for a perpetrator of child sexual abuse because not every child sexual abuser is a pedophile. Pedophilia is a disorder and a specific sexual preference; it is a sickness,” says Dr Asha Bedar, clinical psychologist, trainer and researcher, who has worked extensively with cases of child sexual abuse.

As Pakistan grapples in the wake of this shocking incident, it is time to raise awareness not just about the crime but also about the criminal who is often imperceptible.

In her professional experience, Bedar has seen that many perpetrators are not pedophiles. “They can be very seemingly normal and functional people who have no diagnosed mental illness. They can be respected members of the society. They can be popular in social circles, hard to detect and harder to believe to be sexual predators of children. This makes it doubly tough for children to identify them as well.”

About pedophiles, Dr Uroosa Talib, Psychiatrist and Head of Medical Services, Karwan-e-Hayat Hospital, says that they are not recognisable by appearance, speech or demeanour. “To get to the child, they develop a step by step plan. They first observe how they can build a rapport with the child. These are sharp, brutal, cruel people who will go to any length to get what they want.”

Among the celebrities who have courageously spoken up about being survivors of child sexual abuse is female actor, Nadia Jamil, who has used the platform of social media to draw attention to the issue, and toward other victims like Kainat Batool.

Jamil echoes the view of experts that there is no set profile of such a perpetrator of child sexual abuse, or a rapist. “Any man could potentially sexually abuse or molest a child. Rich men have raped and will. Poor men have raped and will. Literate and illiterate men have raped and will. Until you deal with violent and domineering stereotypes created by patriarchy, men will continue to abuse,” she says, sharing her views with TNS.

Read also: Talking point

“Pedophilia is a disease. True pedophiles are attracted sexually to pre-pubescent children in general. The urges and reasons behind the act of abuse may be different between a pedophile and non-pedophile abuser but the danger is the same — being aroused by a child,” she says, adding that not all abusers are men.

Dr Talib says the commonest emotional trauma that leads to personality disorders is child sexual abuse, even if the impact remains only as a suppressed memory or is clouded by denial. “This is one of the most difficult traumas to ever get over. The victims, in turn, can become perpetrators, and often use sex for power. Their morality changes.”

Earlier this week, the Women’s Action Forum (WAF) sent recommendations to the State, as well as to the National Commission on the Status of Women (NCSW); one of these is to conduct psychological and psychiatric evaluations of those convicted of sexual abuse and rape, including of minors.

Bedar also says that research shows that the numbers of girls and boys sexually abused is almost the same. “But due to years of social conditioning boys internalise the idea that they can protect themselves; they do not want to accept their vulnerability. Gender dynamics and abuse have a very strong connection,” she says, adding that socially generated ideas of masculinity make the boys think that ‘if I can’t be a victim than I must have been a part of it’.

Thus, many male victims grow up telling themselves that they must have consented to it, especially if the abuser was a woman. “Boys are also more vulnerable in some ways as they are outdoors more often and parents allow sons to be with strangers like drivers or helpers more readily compared to daughters.”

Evidence suggests that child sexual abuse and rape is linked to gender-based violence in general. “Strong gender role socialisation, power dynamics, myths about gender and rape, lack of strong sanctions and strong male peer support for masculinity and role modelling” are some of the dynamics Bedar feels need to be looked into.

Experts agree that the core to the solution is making the children more aware but parents are a big part of this equation. “Parents need to have a relationship and connectedness with their children that their child can come and share not just successes but also failures, so that if anything like this happens that makes the child feel embarrassed, he or she can still share it with their parents and their parents believe them,” says Dr Talib. “Giving a child the concept of religious boundaries can actually work positively. This also helps them understand the concept of good and bad touch with keeping religious sensitivities in mind. Teach your children rights over their self and the dignity of their bodies.”

Jamil says she would be wary of strange men paying too much attention to a child. “We have to teach our children to be vigilant and to protect themselves and others. Warn them. Keep an eye on them and pray hard. And we have to change the way we educate ourselves and our kids. Till the state invests in the right people…it’s up to us. One child at a time. We cannot afford to stop or give up. We will not give up.”

The population challenge

 http://tns.thenews.com.pk/population-challenge/#.WqJhJuhubIV

Rising population poses a serious threat to Pakistan’s progress. Here are a few suggestions by experts to stem the crisis

The population challenge
 The biggest issues facing Pakistan are the booming population growth and the lack of awareness across the board regarding how big a threat this poses to the country’s progress. Simply put, the country has too many people and not matching resources in the spheres of food, health, education, and employment systems. Conferences are held and experts join their heads in exasperation to think of policies and projects that can manage this unbridled growth. Yet, the most basic of problems is often overlooked — raising awareness.

If enough efforts are not made to slow down Pakistan’s population growth rate, the population will likely increase from the current 189 million people to 310 million by 2050 (UN DESA, 2015). But this is a conservative estimate. According to President Population Association of Pakistan and Chairman Punjab Higher Education Commission Dr Nizamuddin, the country’s population would cross the 395 million mark by 2047. He said this at the recently held Eighteenth Annual Population Research Conference, Population Growth and Investing in Human Resource Development, in collaboration with Government College University Lahore. With just three years left to achieve its FP 2020 targets, Pakistan’s high growth rate of 2.4 per cent depicted in Population Census of 2017 asks for serious efforts.

Speakers at the conference gave different and relevant solutions to how the challenge can be met. Dr Aziz Rab of Greenstar Marketing emphasised on a number of ideas, all aimed at raising general awareness among people regarding family planning, like a toll free number where people can get guidance regarding FP, as well as free air time for the purpose. However, all of this would need political will and support from the government.

If enough efforts are not made to slow down Pakistan’s population growth rate, the population will likely increase from the current 189 million people to 310 million by 2050 (UN DESA, 2015). But this is a conservative estimate.

Dr Attiya Inayatullah, Chairperson Rahnuma Group of Pakistan, pressed upon the need for public-private partnerships to achieve the desired targets. She expressed the need to bring the private sector on board in all FP efforts, as well as leveraging men to become allies in this endeavour. Stalwarts of the field like Dr Mehtab S. Karim, Executive Director, Centre for Studies in Population & Health, Dr. Zeba A. Sathar, Country Director, Population Council, and Dr. Farid Midhet, Vice President, Population Association of Pakistan & Country Director, Jhpiego Pakistan, participated in the conference.

A panel discussion on Pakistan’s 6th population census results, organised by Jhpiego and the Population Association of Pakistan, had experts debating the methodology of the population census 2017. Journalist Zofeen Ebrahim who was invited as a panelist at the session, said that now that Pakistan has a fair idea of the numbers “we need to focus on planning for the people in earnest instead of quibbling over the methodology of the census”.

As Dr Inayatullah pointed out, Pakistan has the know-how and can achieve the targets. What it needs right now is a reality check, she said. “There are two gaps: Implementation is key for which we must get down to the grass roots. And secondly, where do we find a political leader who will speak out boldly in an upfront manner about this?”

A possible solution

While moots like the aforementioned conference give the much needed impetus to the issue at the top of the pyramid, doctors working at grassroots level like obstetrician Dr Halima Yasmeen at the Jinnah Postgraduate Medical Centre (JPMC) Karachi, feel that growth rate cannot be slowed down till awareness is raised. For this, dedicated counselors who can talk to women and convince them to use contraceptives can play a core role.

“It is an evidence-based fact that introducing a cadre of FP counselors shows better results when it comes to use of contraceptives. These counselors should be there at hospitals 24/7, just like nursing and janitorial staff is there round the clock. And their job should be only to talk to people,” she said, emphasising the importance of convincing people to use contraceptives.

“Our doctors are fulfilling their own dreams, and are on autopilot mode. What they are not doing is fulfilling the needs of this country as a whole,” said Dr Azra Ahsan, gynaecologist and consultant at the National Committee for Maternal and Neonatal Health (NCMNH). Dr Ahsan, while talking to The News on Sunday, expressed that the key to solving this problem lies in sensitising healthcare practitioners. “Every healthcare provider should know about providing family planning (FP) services. But they are not taught how to do it properly even in medical colleges. They don’t even know how to manage post-partum hemorrhage, because there is no glamour in this kind of healthcare service,” she says.

With mobility restrictions and traditional barriers, women don’t readily come to hospitals and clinics. However, the rates of women opting for deliveries in hospitals or healthcare units has gone up considerably, and this allows a great opportunity to convince them for post-partum contraception. “Most women do not come back for follow ups, which means that they will not get contraception-related advice in time,” says Dr Ahsan, commenting on golden opportunities that keep slipping through the net.

A project of NCMNH involved stationing two to three dedicated FP counselors in selected hospitals in Karachi, and this strategic placement multiplied the number of women opting for contraceptives like Intra-Uterine Devices (IUDs). “The day the counselors didn’t come, we saw that no women opted for contraceptives,” says Dr Ahsan.

Obstacles to information

 http://tns.thenews.com.pk/obstacles-information/#.WqJhZ-hubIU

One must be determined and ready to follow up information requests and understand it can take months before one gets something substantive

Obstacles to information

Experts have given laws that allow citizens the Right To Information (RTI) the title ‘Sunshine Laws’ because under the glaring light of the sun nothing misses you, and under the RTI laws, the performance of those holding public offices is exposed to public scrutiny.

Yet Pakistani citizens often find too many obstacles in their path when they attempt to exercise their right to information, even though Article 19 of the Universal Declaration of Human Rights, adopted by the UN General Assembly states that it is a basic human right to be able to seek, receive and impart information and ideas through any media.

If Pakistani people begin to tap into this reservoir of power, the collective narrative could change forever, and transparency and accountability could become realities.

“RTI laws are made for the people. These are unique laws because they empower the common man; that is why those in echelons of power do not like them,” says Dr Raza Gardezi, an RTI activist, adding that those holding public offices are forced to legislate these laws but they often do not let them succeed.

Activists from civil society have been pushing for practical implementation of these laws but their efforts meet a dead end due to bad governance and resistance from political quarters.

“The laws are there on paper but are not operationalised. The discourse would change if RTI laws are implemented,” says Zahid Abdullah, Transparency and Inclusion Specialist with Trust for Democratic Education and Accountability (TDEA), citing the landmark Right of Access to Information Act 2017 passed by the National Assembly in October 2017, months after the Senate unanimously passed the Right of Access to Information Bill 2017, granting citizens access to the record of public authorities.

The Sindh Assembly passed the Sindh Transparency and the Right to Information Bill 2016 in March 2017. According to this new law, it was made mandatory upon the government to establish the Sindh Information Commission within 100 days. Months later, activists and organisations like Free and Fair Election Network (FAFEN) raised their voice against the fact that the government of Sindh had failed to do so.

Likewise in Punjab, the Right to Transparency and Information Act was passed in 2013. Perhaps so effectively did the designated information commissioners play their role for the first tenure that after that, commissioners have not been appointed for the second tenure, explains Abdullah. “A mandatory part of the law is ‘proactive disclosure’ of information on part of the government. However, the general assumption is that it is always the citizens who should ask for the information. To become capable of this proactive disclosure of information, the concerned offices need technological know-how and financial support from the government, which they often don’t get,” he adds.

Read also: Resource for journalists

In his opinion, the role of commissioners of the Information Commission is key and part of their duties is to sensitise government officials as well as advise the government. “They also have to launch awareness-raising campaigns, media campaigns, and provide guidelines to the public as to how they can exercise their rights.”

Other than lack of awareness, political resistance, and an absence of the required information commissions and Public Information Officers (PIO), there are other reasons that hinder the path of citizens aiming to extract information. “One of the main problems is inadequate set-ups for RTI applications and processing,” says Summaiya Zaidi, a lawyer.

Activists from civil society have been pushing for practical implementation of these laws but their efforts meet a dead end due to bad governance and resistance from political quarters. However, Gardezi still encourages citizens to continue asking for information as this is their right. “The operationality of these laws is still undergoing teething pains. But the more people exercise their right, the more those in public offices will have to share the information under pressure. It is demand and supply.”

In 2014, Bolo Bhi, a not-for-profit geared towards advocacy, policy and research in the area of government transparency among others, filed three Freedom of Information requests under the FOI 2002 Ordinance with the Ministry of Information Technology, Pakistan Telecommunications (MOITT). The requests were filed under the Freedom of Information Ordinance (FOI) 2002. “It took months before some information was obtained. At first, we didn’t hear back, so we followed it up with letters to the federal ombudsperson,” says Farieha Aziz, Co-Founder, Bolo Bhi.

She and her team were given some information but not all. “The exclusion clause of the information act was used to deny us access to some of the information. We made the argument based on our legal interpretation of the FOI Act’s exclusion clause,” says Aziz.

While ultimately the Bolo Bhi team had some success in gaining partial information, the average Pakistani is neither aware nor motivated enough to pursue the legal course to get information. “What’s important with RTI requests is that you must be very specific with the question you ask and the information you seek, and clear on who to ask — who has the authority and mandate to provide the information,” advises Aziz.

“You must also be determined and ready to follow up the requests and understand that it can take months before you get something substantive. You might get some information but not all. Don’t let that deter you. Use what you manage to get and then push on to get more. This is a process. You’ve got to be in it for the long haul,” she adds.

Why must women get an ID card?

The reasons for women lagging behind men in the race to get registered as citizens are many, and in rural areas the factors multiply

Why get an ID card?

“Traditionally, in our village, people didn’t feel it was necessary for a woman to have a national identity card (NIC),” she says. Men are the ones who traditionally own property, get preference in education, and have ambitions to be financially independent, not women. But some ten years ago, Kaneez found an incentive to rush to get her NIC made — the Benazir Income Support Programme (BISP) that gave her the hope of a monthly stipend.

Today, at the age of 41, Kaneez is thankful she got the NIC, as none of the employers in Karachi want to hire her as house help till she shows them her NIC. “Once we moved to Karachi, I realised that to get my daughters admitted in school I needed to get their B Forms made.”

The reasons for women lagging behind men in the race to get registered as citizens are many, and in rural areas the factors multiply.

If women do not have an identity card, they lose out on everything, says Maliha Zia Lari, lawyer and gender activist. “Without it they are not recognised by law; they officially do not exist. It has a massive impact on the personal, the social and the institutional levels.”

Without the NIC, women cannot reach out for any legal protection, their ability do anything on their own is curtailed; they cannot hope for independence. They cannot own or inherit property, and also cannot hope for insurance or be the beneficiary of any welfare initiative, as Lari explains. “Nadra requires a family certificate now for everything, so even the husband not having an ID card poses a problem if and when the wife and children want to get registered. Child marriage cannot be mitigated if a girl without an ID card is married off as she may be a minor for all we know.”

The reasons for women lagging behind men in the race to get registered as citizens are many, and in rural areas the factors multiply. “One of the issues is fulfilling the legal requirements and documentation required for getting the CNIC. Women in rural areas often don’t have means to readily get to the towns, are illiterate, have restrictions on mobility due to traditional customs and cannot travel alone [due to security reasons or family restrictions], and male members of their families don’t always support them to get to offices of the National Database & Registration Authority (Nadra),” says Ali Akbar from the Association for Water, Applied Education & Renewable Energy (AWARE) in district Tharparkar.

Read also: The cultural blockade

Akbar shares instances where women who did not have NICs were exploited and robbed of their rights. “Brothers and fathers who were not willing to give the rightful share of wealth to a sister or a daughter would, to close the revenue department’s record, get the tehsildar to record the statement of a couple of villagers mentioning that Mr so and so has no sister/daughters or that she has died or she is not claiming her right, and thus this male member of the family has the right to hold this property. But now the Nadra record is computerised and the woman has to be present and her statement recorded before the magistrate or registrar for any change in the legal ownership of property. The NIC, then, is a basic pillar for the empowerment of any woman.”

However, the awareness about the importance of being a registered citizen is growing among Pakistani women. Mahnaz Rahman, Director, Sindh chapter of the Aurat Foundation, says the projects by AF aim to incentivise it in many ways for women. “For example, we tell Muslim women that you need it to go for Hajj otherwise you cannot get a passport to travel for the pilgrimage. There is increased realisation about this among the lower income and middle income strata as well where the women are working to support their families,” she says.

Currently, AF is working on a project aimed at women from non-Muslim communities, encouraging them to get CNICs and in turn to exercise their right to cast the vote.

The BISP has had a positive impact in encouraging women like Kaneez to apply for NICs. “Our surveys show that numbers of women who have registered for the NIC has increased exponentially,” says Hasrat Prakash, Field Supervisor, BISP, in Mithi and Chachro, district Tharparkar, who adds that women are not just going for the ID card but are actually opting for the Smart National Identity Card (SNIC), Pakistan’s first national electronic identity card. The SNIC contains a data chip and many security features.

“BISP now requires biometric verification, which incentivised making of these SNICs. The incentive, of course, is the money stipend. The best part is that more women are now included in the voters’ list, and that more people are registering daughters at birth for the B Form, especially the eldest daughter of each family,” says Prakash.

As mobility still remains a real issue for women, facilitation efforts are being made by various organisations to help them get registered. “If in any locality we find one hundred or more women who need to get registered, Nadra’s mobile van comes there to help us and register women on the spot. There are holistic efforts by the civil society, aid agencies, Nadra and BISP among others, and the situation is comparatively better,” says Rahman, but also adds that more campaigns and efforts are needed for social mobilisation.

“Registering can be a tiresome process and if the people are not highly motivated why would they give up on a week’s daily wages to get an identity card?” says Lari, adding that “the most important thing that needs to be done is make the registration free as well as easier.”

http://tns.thenews.com.pk/get-id-card/#.Wi-XQt-WbIU

Truck art for education

An initiative that spreads pro-girls’ education slogans via truck art is hoping to change mindsets in Kohistan and around the country

Truck art for education

“It’s an initiative that I am so proud of because the local community has owned it,” says documentary filmmaker and rights activist Samar Minallah who developed the concept of a culturally relevant advocacy initiative through truck art. “The brightly painted trucks are like moving billboards that amplify a message from one part of Pakistan to another. My visit to Kohistan further reinforced my belief in using art and traditional motifs and designs for raising awareness,” says Minallah. Kohistan, according to the Alif Ailaan Pakistan Education District ranking 2015, is the worst performing district educationally in KP.

According to local teachers, children of primary schools of Pattan look forward to attending their newly painted classrooms decorated with bright indigenous symbols from Kohistan.

Using indigenous sensitivities and art in mind, Minallah interviewed local people for their opinion and collected local embroidery motifs created by village women as the preparatory research for the project, to incorporate in the final drawings and paintings. “The aim was to not only raise awareness about the importance of education for girls but also to honour local art and crafts, and develop a sense of ownership for the local community members,” she says. The total number of trucks that have been painted till now with these messages is 30.

“The feedback has been great because indigenous art and tools were used to convince local communities about the importance of education for girls, so it found acceptance and appreciation,” said Dr Ziaur Rehman Faruqi who is Head of Programmes at National Integrated Development Association (NIDA), and is actively involved with the project ‘Girls Right to Education’ in collaboration with UNESCO and both the federal and provincial governments. In the spirit of collaborative efforts, Faruqi shared that they have brought on board not just local leaders and parents but also the religious clergy and the political leadership for what he called a “holistic approach”. “This could not have been achieved otherwise as Kohistan had multiple issues like ghost schools and teachers.”

IMG_0010

School children of Kohistan took part in interactive painting activities .

According to local teachers, children of primary schools of Pattan look forward to attending their newly painted classrooms decorated with bright indigenous symbols from Kohistan, shares Minallah, adding that truck owners from Punjab have reached out to the artists to have their trucks painted with similar images and messages. “One of the local mosque imams asked if his mosque’s name could also be added on the newly painted bridge along with the pro-education empowering messages,” she says. Local people take selfies and photos from their mobile phones in front of these bridges of Sholgara, Dubair and Bisham adorned with important messages such as

Bhai aur behen mil kar school jaain, Zindagi main ilm se roshni jalaain (Both brother and sister should go to school and bring to life the light of knowledge) and Apni aulaad ko taleem ka tohfa daen (Give your children the gift of education).

Atif Khan, Minister for Education, KP, shares how education of girls is now being seen as a priority. “We are especially working on education for girls. Examples are that 70 per cent of all new schools we are working on are schools for girls, and also 70 per cent of the work to provide missing facilities in schools is focused on facilities for girls,” he says. As an incentive, female education managers in backward districts like Kohistan are being paid 50 per cent extra. Lauding the initiative to sensitize communities towards the right of education for girls through truck art, the minister said that traditions don’t change overnight. “Just constructing schools and passing bills is not enough. It is the mindsets that have to be worked on.”

“Work on this project has made me happy. It made the girls and their teachers happy. The classrooms looked beautiful. The girls would join in painting with me,” said Shaukat Khan, the painter who has till now painted these positive messages with colourful drawings on three bridges and eight classrooms in far-flung parts of Kohistan. “Initially the locals resisted. They were even upset. But once they saw the finished work, they began to like the idea. Change is starting to happen,” said Khan. Khan, a father of four daughters and one son, is an artist from Swat, who has made sure his daughters are going to school “because girls must get an education”.

http://tns.thenews.com.pk/truck-art-education/#.Wh–5UqWbIU

Old age matters – What being a caregiver to my mother & her passing taught me

Caring for the elderly is not just an act of love. It is a skill that one acquires over time, whether you are family or a paid caregiver. It is an upward learning curve, and the only way out is through

pp (1)

Two months ago, I lost my mother after her ten years’ long battle with the debilitating and progressive disease called dementia. On that first night after she passed, I got a message from a friend saying, “As you settle down to spend the first night without her in this world….” These words struck a chord with me. As people poured in to condole, and said, “you must have been prepared,” I honestly didn’t know if I was actually prepared, even though I knew it was inevitable. You’re never really prepared for the emptiness the loss of a loved one leaves. Yet, awareness helps us deal with this testing time.

For those who can afford to hire help or get their elderly loved one treated by trained healthcare practitioners, the blow is relatively cushioned, and the biggest struggle is the emotional pain one goes through to witness them fading away. This is when you learn the word ‘palliative’ care. “Sadly, less than 1 per cent Pakistanis have access to specialty palliative care,” says Dr Atif Waqar, Geriatrician and Section Head for palliative Care at the Aga Khan University Hospital, Karachi.

Geriatrics and Palliative care, as he explains, are two different sub-sections of medical care. “Geriatrics is care and treatment of the elderly, while palliative care is aimed at relief and prevention of suffering for both the patients as well as their families. Palliative care is not necessarily end of life care; that is a common misconception that sometimes even healthcare providers have,” he explains. Palliative care, then, is a more holistic approach. “It is actually all about living, not death. However, if all treatment options have been tried and exhausted, then palliative care does involve end of life or hospice care.

“Geriatrics is care and treatment of the elderly while Palliative care is aimed at relief and prevention of suffering for both the patients as well as their families. Palliative care is not necessarily end of life care; that is a common misconception that sometimes even healthcare providers have,” says Dr Atif Waqar.

Thus, we can say that all end-of-life care does come under palliative care but all palliative care is not end of life care.” Palliative care is a shift in focus where medical practitioners try to palliate the symptoms. Studies show that terminally ill patients actually live longer with holistic palliative care rather than with aggressive treatment.

As a son and caregiver, Afaq Ahmed, who lost his mother a few years earlier and his father just six weeks ago, has had to make some tough choices along with his siblings. He describes the painful experience of seeing his father, who loved to eat, refusing to eat due to dementia. “He would purse his lips tightly, and even if we managed to put something in his mouth, he kept the food in for a long time,” he says. The disease progressed, and he shares that it was a very tough decision when they decided that they wouldn’t use [aggressive] means to prolong his agony.

“Doctors and physicians are trained to save lives, which is why sometimes they use invasive means to keep the patient alive, but end up prolonging their suffering,” says Dr Waqar, and shares the questions that palliative care doctors put in front of the patients’ families. “Questions like ‘What would your loved one have wanted? Would they have wanted to live with this quality of life in a state of complete dependency? Would they have liked to be on a ventilator or someone pumping on their chest for CPR when it’s of no benefit? Would they rather choose to pass with dignity?’” What is often seen as defeat, then, by caregivers or physicians, is actually an informed choice.

“Doctors told us to consider if this is the kind of life our father would have wanted. My parents repeatedly used to say that they would not want a life of dependency and they were ready for the transition. We based our decision on the honest answer to that,” says Ahmed. He and his siblings decided to not force feed their father, neither by mouth nor through means such as a nasogastric (NG) tube.

Read also: Care for the caregivers

However this does not imply that all medications and treatment is discontinued. According to Waqar, intravenous fluids and antibiotics are actually therapeutic and if they help alleviate symptoms they should be continued till the end. Pain relieving medicines, like Morphine, are an option at this stage.

“Morphine is on WHO’s List of Essential Medicines that should be available because it is everyone’s right to be relieved of pain. But in Pakistan limited hospitals are given very specific and limited quotas. We strongly urge the concerned drug regulatory and health authorities to make it available to trained medical practitioners,” says Dr Waqar.

Ahmed and the family did use last resort pain relieving medications to ease his father’s pain in the last few days. “These medicines are not easily available but you can get them through the hospital or doctor under whose treatment your loved one is.”

It is not, however, easy to predict when it is time to let go. “Prognostication, or an estimation of survival, varies from illness to illness. It is both a science and an art. The variables differ from person to person. Doctors run tests to determine the actual situation,” says Dr Waqar. In his opinion, estimation is much easier in terminal stage cancer, for example, but not so easy in neurodegenerative diseases like dementia.

“Sometimes end stage patients surprise you and bounce back. There are dips, plateaus and peaks in their condition. However, when we see a steady decline in these four areas — functional, clinical, nutritional and cognitive — we know that the patient is approaching the end.” You see your loved one becoming increasingly dependent for even small chores, from being on the wheelchair to being bed-bound, and sleeping most of the day.

“They eventually stop eating; it starts with a decrease in taking solids but goes onto difficulty in even swallowing liquids. This is a natural process towards ‘transition’ which we commonly know as death. When the organs begin to shut down, the caloric requirement becomes lesser and lesser,” explains the doctor, adding that the family often thinks they are starving, which actually they are not; they no longer need that much nutrition. Caregivers attempt to force feed them which does more harm than good as the food ends up going in the lungs and aspiration pneumonia can develop.

In a lot of cases, the patient suddenly begins to show improvement or a burst of energy in the last few weeks or months. “That is actually the calm before the storm. This burst of energy helps them finish unfinished business. These facts are scientifically proven and are not hocus pocus,” Dr Waqar says. In his opinion, people in their end stage have very strong awareness about the upcoming transition. Patients are known to experience visitations of their loved ones who have already passed on and are now beckoning them. Near Death Awareness (NDA) is part of the dying process but caregivers often confuse it with delirium. Some patients who can articulate their experiences communicate what they are going through; others, like patients of advanced dementia, may not be able to.

The role of the caregivers, whether they are family members or paid staff, is one that is both painstaking and rewarding. Zaiba Emanuelle, a certified nurse in Karachi, works with elderly patients and has seen a surge in the number of nurses being employed in homes for the elderly. In her experience, patients are easier to handle compared to families of the patients. “The family keeps interrogating us. I understand that they have to do it, but it’s not easy dealing with them,” says Zaiba. “I have learnt that to deal with elderly patients, you have to understand them, and treat them with as much gentleness as one would treat children. It’s all about patience and flexibility.”

As a caregiver, I have learnt tremendously about life and death because of this sojourn on the path of dementia with my mother. I have learnt about what it means to be an elderly person in the twilight years of life, or to be a caregiver. Caring for the elderly is not just an act of love. It is a skill that one acquires over time, whether you are family or a paid caregiver. It is an upward learning curve, and the only way out is through.

When senior citizens are not a priority

Expecting specialised geriatric care might be too ambitious for the average Pakistani who sometimes does not even have a comfortable home or a devoted caregiver. “The numbers of neglected and abandoned senior citizens have escalated, and the reasons are many,” says Faisal Edhi of the Edhi Foundation that has been taking care of abandoned and underprivileged elderly since inception.

He feels that the dismantling of the joint family system, urbanisation, the thrust on industries, and the increase in population — all this has left families with little time to care for their elderly. “The government needs to face this reality and think of setting up old-age homes in peri-urban areas and outskirts of cities; this would be a much more economical option compared to hospitals. But senior citizens are not the priority in an already failing service sector,” he says.

In 2014, both Khyber-Pakhtunkhwa (KP) and Sindh provincial assemblies came up with laws guarding interests of the elderly. The laws are ambitious. Sindh Senior Citizen Welfare Act, 2014, aims at lodging establishments, free geriatric and medical services, 25 per cent concession in all private medical centres and 25 per cent discount on purchase of essential commodities to name a few. However, what is missing is the implementation. Quality care for the elderly requires a steady stream of money, something not many Pakistani families can afford.

http://tns.thenews.com.pk/old-age-matters/#.Wh–3kqWbIU