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One against twenty – The only differently-abled candidate in Elections 2018

Differently-abled Raza Shah is contesting elections from PS-103, and probably he is the only such candidate

One against twenty
He dreams of climbing the K-2 one day. But contesting against 20 heavyweight contestants in Karachi’s thickly populated and ethnically diverse constituency PS-103 is possibly tougher than climbing a mountain, especially if one is an independent candidate who does not have the backing of the affluent.

For Raza Shah, the fact that he is one of the few, or possibly Pakistan’s only differently-abled contestant for the upcoming general elections 2018, his being a polio survivor is not his biggest limitation. “We live in a world where political parties politicise everything to win the elections. If there were other differently-abled contestants, they would have been highlighted by the big parties by now for sure,” says 36-years-old Shah.

For everyone in their lives, there is one moment of epiphany. So it was for Shah who, witnessing the issues people like him faced and the fact that they had no one to solve the problems, realised he must step up. “For every problem, one had to either contact political bigwigs through networks and contacts, or through giving money. The people who were our points of contact knew nothing about our problems. I thought to myself ‘why can’t I be that point of contact?’.”

From 8am to 3am, Shah and his core group of supporters knock door to door in their constituency for the Sindh Assembly seat PS-103. Gradually, people are getting convinced, and the response is very positive, according to Shah, because he is one of them. But it hasn’t been easy. “Har party ke hissay kee gaaliyan bhi mein ne khayi hain (I have been hearing abuses in place of the other political parties),” he laughs and says, because when he goes to convince people, they ask what can he do if those political giants could do nothing, only to be convinced that here is a man who actually has the will to fight the odds and help his community. And the will is perhaps all it takes.

Campaigning has taught him a lot, as interacting one-on-one teaches what hours on the podium giving speeches doesn’t. “I have also learnt that our people are very hospitable and make sure you take chai or cold drinks, but there are no public toilets in Karachi,” he says, pointing out a legitimate issue in the garb of humour.

While newspapers proudly sported the headline given by Election Commission of Pakistan (ECP) that disabled people are being facilitated and are allowed to vote through postal ballot, where is that much-awaited headline that says that differently-abled people are contesting elections? Yes there are reserved seats for them but is that enough? For Shah, his contesting the elections is also about making a point about social inclusion. Parties like Pakistan Tehreek-e-Insaf (PTI) and Pakistan People’s Party (PPP) have sections in their manifesto talking about ensuring rights of the differently-abled.

Campaigning has taught him a lot, as interacting one-on-one teaches what hours on the podium giving speeches doesn’t.

Other major political parties have not even bothered to do that. However, Shah feels that this is all good to the extent of manifestos only, but Pakistan’s differently-abled need more than just job quotas. They need their voices heard. “Practically, no one has fielded differently-abled candidates from their parties, have they?” says Shah who contracted polio at the age of one and a half. “Every day is a fight, living with this [disability]. If I can fight this, I can do more.”

An optimist, Shah feels that more and more independent candidates will come up in elections over time. “Voters will also understand over time that those who spend crores on election campaigns will obviously invest that much to earn it all and more back after the elections. It is independent candidates who are focused on solving people’s problems because they are in it to serve their communities,” he adds. His election symbol is brick. “It is a symbol of constructing something. It reflects the ideology of progress.”

Shah also does not see his disability as his claim to fame. “I tell people that if I can contest elections with limitations like being an independent candidate, putting up a fight against representatives of Pakistan’s biggest political parties, and on top of it being differently-abled, then so can you. I am a reality. I am part of the equation, even though I have limitations. Unless citizens like me stand up for themselves, and gain the strength to help their communities, no one is going to help us.”

http://tns.thenews.com.pk/one-twenty/#.W3Uw2ugzbIU

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As the door opens to guests…

While much remains the same when it comes to traditions of eid, there is a lot that has changed

As the door opens to guests…
A wave of nostalgia grips most of us when we reminisce about eid of bygone years.

The countdown to eid would begin the day the Ramzan moon was sighted. As children, we would go out in the garden or on the roof and try to catch a glimpse of the moon on chand raat. Thereon the preparations would begin.

The sewaiyyan, the sheer khorma, the mehndi, the glass bangles, the trolley set for guests, the giddy excitement whenever the bell rung, the eidee…eid was festivity at its best.

Eid is the highlight of the year for so many of us. Or is it? While much remains the same when it comes to traditions of eid, there is much that has changed.

For starters, on eid one could just go and ring a relative or neighbour’s bell, go in for a treat, and enjoy. There was an excitement in the anticipation of who would come to visit. However, over time the concept of “Open House” was introduced. There is now a specific time on which the doors open to guests. If you miss that time window, it is unlikely that you will get a chance to go there again.

Faster times. A faster world. Another thing that has changed is the practicality. If we have met someone on the first day of eid as they visited you or met you at your grandmother’s, we no longer want to meet the same people again by visiting them, unlike the earlier culture of exchange visits, where if someone visited you, it was a must that you also visited them.

There are also lesser of the big, gigantic eid get-togethers at the homes of the elders of the family, simply because families have grown and multiplied, house help is less readily available or affordable, and quite frankly it’s too much work for the overworked daughters-in-law or daughters who used to be doing the tough work of pulling off lunches for 80 people every eid. Yes, our societal dynamics are in flux, if not completely altered.

Some 20 years ago, girls were so conditioned to put mehndi on their hands for eid that it never even occurred to them that eid could be without mehndi. From the crushed raw henna leaves era to the chemical-filled henna cone era, and now to the glitter-filled henna tattoos — henna still remains a part of the eid tradition. But many no longer choose to have it applied. Some find it itchy, others don’t like the smell, and yet others feel it looks very unprofessional to go to office the 4th day of eid with henna peeling off one’s palms.

There are also lesser of the big, gigantic eid get-togethers at the homes of the elders of the family, simply because families have grown and multiplied, house help is less readily available or affordable, and quite frankly it’s too much work for the overworked daughters-in-law or daughters.

Some things may have changed for the better, though. While a majority of women still don’t get why they should also go to the mosque for eid prayers, mainly because their men still don’t get it, there is a growing number of Pakistani women at least in the major cities that do go for eid namaz. I happen to be one of them and I can say safely that it is a beautiful experience that acts like a bridge between Ramzan and the rest of the year.

In the absence of going for eid namaz, the spirituality and the connection with the Creator one has inched towards in Ramzan is suddenly lost on eid morning, and eid becomes just another day, barring the eating and meeting and dressing up.

As for eidee, it still remains an intrinsic part of eid, and children (they could be in their 40s for all you know) look up to their elders in the hope of that coveted envelope. However, in earlier times one would give eidee to any and every younger person one met. Now parents have become smarter and more calculative. They have separate lifafas (envelopes) for those who give to their children generously, compared to those who give smaller sums.

Read also: Eid with Maria

But perhaps the most obvious change is that so many of us use eid holidays for vacationing. With the number of Pakistani expatriates increasing by the minute, and a few family members travelling on eid for vacationing, there is that void that not having one family member leaves for the rest, especially on happy occasions. Add to it that many parents can be seen complaining that their children sleep it out on the eid day.

But there are some beautiful traditions of eid that continue to date. Giving (starting with the fitranah), feeding (the sewaiyyan above all), sharing (eidee is sharing money, isn’t it), reconnecting with relatives, looking good, feeling good, and celebrating having gotten the opportunity of another Ramzan. It is hoped that this — the real spirit of eid — will survive the test of time.

http://tns.thenews.com.pk/door-opens-guests/#.W3UwzegzbIV

In Pakistan, restaurants only care if you fast, but not if you pray

 Published: June 8, 2018
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Muslim women activists pray the Maghrib sunset prayer before Iftar outside Trump Tower in New York, US, on June 1, 2017. PHOTO: REUTERS

“Fast, pray, feast!”

This attractive marketing tagline, alongside tempting pictures of food, is being circulated by a well-known eatery this Ramazan, as is the case every year. Not only is the food tempting, but also the deals. And why not? When one opens their fast at sunset in this most special month for Muslims, delicious food is but a must.

But there is one issue. While they openly marketed the “pray” bit, there is no place for praying if you go to said eatery for an iftar deal. A young girl I spoke with who went there with her friend said the staff looked shocked when she asked where she could pray.

“They said we have no arrangements, because no one wants to pray generally, barring very few people. I told them I am from those very few and you must help me; I need a very tiny corner for just five minutes. At my insistence, they made me stand between tables crowded with people. It was a very uncomfortable experience. Not going there again in Ramazan.”

This is not just about one restaurant or café. Except a few places, you can literally count on your fingers how a majority of restaurants milk the blessings of Ramazan by introducing dealswhich help increase their sales, but do not have the sensitivity towards those customers who want to pray.

This has been a topic of discussion on social media and otherwise since years, but nothing seems to come out of it. I have prayed on dusty floors, with music playing and people passing in front of me, whenever I dared to go for an iftar meal. The problem for women is even more pronounced, because men can go for prayers to a nearby mosque if need be, but except for limited mosques that allow women to pray, there is no concept of mosques as public spaces for women.

Ironically, many mosques allow women to come for Taraweeh prayers in Ramazan, a voluntary prayer, but will not open their doors to women for the obligatory five prayers.

As someone who has been trying to bring this issue to the attention of the owners and the management of restaurants for years, their responses on social media have been less than empathetic.

“Why do you need to go and eat out in Ramazan if you are so religious? Do your iftar at home. Can’t you live without eating out?”

These, and other stronger reactions, are normal now. It is as if people who want to pray in Ramazan are not welcome to mingle in society and go out to eat, and are meant to stay in bubbles or at home.

Sure, one can do iftar mostly at home. But there are times you are invited to go out. And there are times you feel like going out to eat. The reverse discrimination against people who attempt at being practicing Muslims in the Islamic Republic of Pakistan is real. On the other hand, I have experienced refreshing cooperation from non-Muslim friends and from strangers while traveling abroad whenever I needed to pray.

This issue is not just specific to Ramazan. However, in other months of the year, one can plan to go out to eat at a time when prayers are not disturbed. But when fasting, this is not a possibility.

There are many possible solutions to this, and some select restaurants have employed these solutions. For example, a well-known oriental restaurant in Clifton has made arrangements not just for their own customers to pray, but also welcomes customers of nearby eateries. At other places, they request you to pray quickly and by turn, but have the good sense to at least keep prayer mats. But such restaurants are numbered.

So here’s sincerely requesting restaurants: the next time you use the Ramazan tagline to boost your sales, have enough empathy to reserve a small corner of your restaurant for 15 minutes so that those who want to pray can do so with ease. If for nothing else, then in the spirit of the compassion that Ramazan is all about.

https://blogs.tribune.com.pk/story/67756/in-pakistan-restaurants-only-care-if-you-fast-but-not-if-you-pray/

Life after the partner – Being a widow in Pakistan

 http://tns.thenews.com.pk/life-partner/#.WqJpYehubIU

Today a widow is not ready to accept her traditional role in society of being dependent on others for everything in life

Life after the partner

Every family had a few such widows — some young and others older. Their presence was not considered auspicious, and they were supposed to lead listless sedentary lives devoid of any hope for a better future, waiting for stipends and hand-me-downs, with a looming sense of guilt as if that woman was somehow responsible for the death of her husband.

More than a decade and a half since we entered the third millennium, the widowed women of Pakistan find themselves a little ahead of where they once stood on the social ladder yet are still entangled in some deep-rooted traditions, stigmas and restrictions.

More than a decade and a half since we entered the third millennium, the widowed women of Pakistan find themselves a little ahead of where they once stood on the social ladder yet are still entangled in some deep-rooted traditions, stigmas and restrictions.

Farah Kamal, an education and development consultant, describes her journey decade by decade: she grew up in the 80s, got married in the 90s, and became a widow in the new millennium. “For those girls who grew up when I did, we were not raised to lead independent lives. When I became a widow, I suddenly found myself alone. And independent. Thus, for me, the societal attitudes posed the biggest challenge, more than the financial challenge as I was already a working woman and could support myself financially.”

With the loss of her husband, Farah was encouraged by people to start living with her parents and siblings or to get a relative to live with them, a suggestion she did not accept. “We have the stereotypical image of a widow. She should be depressed, subdued, dressed in sober clothes. But today’s widow is not going to sit in a corner dressed in white, dependent on others to give her charity.”

Read also: Journey to legal rights

It is not just the woman who has lost her husband that suffers the impact of social stigma that surrounds a widow. It is also her children. While Ahmer Ali was an adult when he lost his father five years ago, his experience and observing as a son what his mother has gone through has taught him a lot about the plight of a widow. “For my mother and my siblings, both finances as well as the emotional trauma were huge challenges, as were the social taboos. Take a small example that in our society a widow is supposed to dress as soberly as she can. My mother loves to wear bright colors but after my father passed away I observed she begun to avoid clothes of colour. However, I ensured that she wore what she liked,” he says.

Commenting on social attitudes, Ahmer confesses that if the prospect of his mother remarrying would have come up soon after his father passed away, he may or may not have been able to accept it. “Five years down the lane, I say to myself ‘why not?’. People need to understand that widows also have a right to lead their lives as they wish, and have a right to start afresh if they like. In Islam, there is no obstacle in a widow’s remarriage; it is in fact encouraged. The clergy needs to spread awareness about this. But instead of encouraging the widow to move on with her life, people make the one who is mourning cry more. Social attitudes towards widows need to change. It is time.”

For Nazia* (name changed on request), the experience was not entirely negative when it came to how people acted towards her after she lost her husband. “My friends and family were quite empathetic and helpful when it happened,” she says, but adds that the experience has been mixed, “Because on my husband’s first death anniversary, my relatives, and that too close ones, called and expected me to be crying and be really sad. Incidentally, my daughter got engaged two years later on the same date that my husband had died, and even my closest of kin said, ‘why did you do it on the same date?’ I got tired explaining that the boy’s sister was leaving the next day so I did not have an option,” she says. “To date, I feel people observe me intently, and expect me to be sad and depressed,” she adds.

Yet, life has not allowed her that liberty. Gaping challenges faced this mother of two when her husband passed away, leaving them in the midst of financial challenges. “I didn’t really get any time to mourn. I was out of the house on the fourth day for the death certificate. Who else was there to support me and my girls?” As her family did not own a house, Nazia had to arrange a place to live soon after becoming a widow, and started working full-time to support herself and her daughters. “I heard comments like ‘haan haan tum to buhut independent ho, tumhain kisi ki zaroorat nahin (You are a very independent woman, seems you need no one)’.” But she did what she had to in order to survive. “In so many ways, I have become a stronger woman since I lost my husband,” she says.

Another social attitude is the assumption that widowed women are on the lookout for a man to remarry. “My male colleagues stopped visiting me [even for work] because their wives did not want their husbands to interact with me,” says Farah. She poignantly describes the experience of being widowed: “It was like being off-loaded on a dark highway in the middle of a journey.” Her being a financially empowered single woman has proven to be another challenge, as men see such a woman as a lucrative prospect.

Advising young girls, Farah says girls need to be independent and educated to be able to support themselves if such a situation in life arises. She is also of the opinion that girls should weigh carefully factors like health and lifestyle of a man before marrying, because unhealthy lifestyles or diseases of a man may result in his prematurely leaving this world, and the widow being left to suffer.

“I hate when in the ‘marital status’ column, I am asked to write ‘widow’,” Farah says. “This status does not identify who I am. I have also realised that my happiness is my own responsibility, as is my survival. This trial has made me stronger as a woman.”

A salon at home

 http://tns.thenews.com.pk/salon-home/#.WqJgfehubIV

Internet connectivity is helping a lot of beauticians who have opted for working from home

A salon at home

When Rizwana Raza started taking appointments at home as a home-based make-up artist and hair stylist more than a decade ago, her reason was not being able to leave young children alone at home, and to be able to manage her home while working. “It was a more convenient arrangement than working at salons that used to take up the entire day. This allowed me to juggle many things simultaneously, particularly being able to run my home and be there for my children,” she says.

All these years later, working from home still remains her choice even though she has been offered more lucrative full-time work options at well-known salons.

Home-based beauticians and make-up artists are all the rage in Karachi, and the reasons are many. A huge advantage which many make-up artists, like Qirat Baber, are using is the social media to advertise their work. “I was the first home-based make-up artist in the city on Snapchat. I use SnapChat, Instagram and Facebook to advertise my work. It is not without challenges as I only work by appointments so potential customers cannot just walk in to see my work and have to rely on photographs,” says Baber.

Home-based beauticians and make-up artists are all the rage in Karachi, and the reasons are many. A huge advantage which many make-up artists, like Qirat Baber, are using is the social media to advertise their work.

Yet she is very happy with working from home as it allows her to work in her own space, and at her own pace. Baber also appreciates the fact that she gets more undivided time with each client, and clients also have come to appreciate this rather than being in a salon that has many clients sitting in queues waiting to be dolled up. “Salons can become fish markets,” she says, sharing that she works with a single helper.

Another popular young home-based stylist, Rija Bakhtiar, started practising the art three-years ago, and now she has taken her passion to the next by setting up a salon at home. “Home was the only place at that time for me to start my business on a small scale. The working hours are flexible and the overheads are less as compared to opening up a studio. It has turned out to be my best decision,” she says. Internet was and is her only source of advertisement. She relies on Snapchat, Instagram, Facebook and Whatsapp.

All three make-up artists agree that money is also saved by the fact that they don’t have to pay taxes. “However, it is not like we have no overheads. The investment in equipment is a lot. Also, I mostly get my supplies online which proves to be quite expensive,” says Baber.

Read also: …boys mean business too

For Bakhtiar, one challenge is that she can’t cater to large numbers of clients. “I have to stick with limited clients to maintain a normal environment at my home,” she says.

One difficulty these artists face is that if they do not provide other services like waxing, threading and face polish, for example, their clientele becomes limited. “And many clients do not like the home atmosphere. They like the ambience and hustle and bustle of a salon,” says Raza.

When asked how she makes up for that disadvantage, she candidly answers that she does so by keeping her rates very reasonable, by serving them coffee and snacks and working on developing a rapport with them. “I make friends out of my clients. Once that happens, they continue coming to me.”

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

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

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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.

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