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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.

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

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Depression – Career, family life, everything suffers

In a society where mental illness is stigmatised and its treatment is expensive, the harm of not getting treatment for depression can be disastrous

Career, family life, everything suffers

Eventually, you may wander the labyrinth and keep popping pills that sometimes help you sleep and at other times are mood-lifters. By so doing, you become one of the many Pakistanis who pop millions of these “happy” pills to fight a very real and very debilitating illness.

“The total antidepressant market in Pakistan is approximately Rs4 billion, as per annual sales, and is growing at the pace of 16 per cent; the market for tranquilisers or anxiolytics is also around PKR3 billion, with a double digit growth of 10 per cent,” says Nouman Lateef, Director, BU-GI Care, Merck.

“Depression is underdiagnosed and undertreated. People suffer needlessly. On the other hand, some people are misdiagnosed and receive medications they shouldn’t,” says Dr Nadir Ali Syed, a neurologist at Karachi’s South City Hospital.

However, disagreeing with studies that indicate that between 30-50 per cent of Pakistanis are depressed, he feels the actual figure for patients in need of medical attention is closer to 10 per cent. “That is still very common. Major Depressive Disorder is remarkably common in Pakistan, as it is in the rest of the world.”

The disease chooses its prey without disparity on the basis of economics, and strikes people across the board, whether they are rich or poor. In the opinion of Dr Uroosa Talib, Psychiatrist and Head of Medical Services, Karwan-e-Hayat Hospital, the prevalence rate of mental illness is high. “1 in every 4 persons in Karachi suffers. The reasons are many. Lack of basic amenities like water and electricity, poverty, street crime, terrorism and violence,” she says, talking about the social reasons for depression.

Read also: An overdose of self-medication

Shedding light on the medical causes of depression, Dr Syed says that depression can be the primary illness or frequently also be triggered by other medical problems, such as thyroid disorders or neurological diseases. It can be related to pregnancy or menstruation or even to medications or vitamin deficiency. “All depression is neurological in the sense that it is related to brain abnormality. It is associated with changes in chemicals in the brain, such as serotonin norepinephrine or dopamine. Many neurological disorders can be a reason for depression like stroke, Parkinson’s disease, migraine headaches, dementia, or pain from any cause.”

Treatment of depression can be an expensive prospect, and mental healthcare providers are not readily accessible. “In Karachi, Jinnah Hospital and Civil Hospital have psychiatric facilities. Other public hospitals just have OPDs,” says Dr Talib.

Treatment of depression can be an expensive prospect, and mental healthcare providers are not readily accessible for the underprivileged. “In Karachi, Jinnah Hospital and Civil Hospital have psychiatric facilities. Other public hospitals just have OPDs that prescribe anti-psychotics and that is not enough,” says Dr Talib, adding that treatment requires both talk therapy and medication.

Dr. Syed says the most common medicines used in Pakistan are Escitalopram, Citalopram, Fluoxetine, Paroxetine and Sertraline, sold under various brand names.

Medication to treat depression is a potential lifesaver, but must be prescribed by doctors qualified to prescribe them. “Most of the medicines sold over the counter are anxiolytics like Lexotanil, Xanax and Valium. These are more addictive and people use them as hypnotics,” says Lateef, talking about the popular benzodiazepines class of medicines that are used and abused readily. “Anti-depressants’ effect is not immediate; their impact takes time to show. However, a new class of anti-depressants has a quicker onset of effect.”

“A study shows that 60-65 per cent of the patients visiting primary care physicians are patients of depression and anxiety,” says Dr Talib. However, most of those coming to the general physician don’t even know what they are suffering from. “They complain of chronic symptoms like backache or fatigue, which are actually physical manifestations of depression. We go to the doctor and take medicines for physical symptoms, but not for mental illnesses.”

Females being at least twice as susceptible to depression in Pakistan, Dr Talib feels that this is because females have to carry heavier emotional loads, particularly in lower income groups. “These women are already struggling so much to survive that their stress tolerance is very low. Their families don’t understand what is happening to them. They have no one to talk to. They have no acknowledgment of emotional issues and no means to relax themselves. Multiple childbirths and hormonal fluctuation add to the problem.”

Lateef says that while prescribing an anti-depressant, the age and condition of the patient should be taken into account.

“People should never self-medicate. There are specific medications for specific patient types,” says Dr Syed.

“But instead of psychiatrists who should actually be prescribing them, they are mostly prescribed by cardiologists and general physicians,” says Dr Talib.

She also advises that one should not discontinue these medicines suddenly. “They should be tapered off, but only after the doctor weighs the pros and cons. Relapse of depression is very common so one might need a maintenance dose of the medicine for life.”

The treatment for depression is as complex as the disorder itself. Medication must be coupled with counselling and rehabilitation. Afia Wajahat, therapist, works with Mental and Social Health Advocacy and Literacy (MASHAL), in underprivileged areas of Karachi. It is an initiative linked with the Aman Foundation. Her team goes door-to-door to screen people for mental illnesses, provide them therapy, and help them get a second lease of life through rehabilitation and provision of livelihood to bring them out of the clutches of poverty.

In Wajahat’s experience, rehabilitation is most important in order to avoid a relapse. “For that we have to bring them back towards leading productive lives. We enroll them in vocational trainings, socialise with them as they have to come out of isolation, and counsel them to give them confidence.”

The harm of not getting treatment for depression can be disastrous. “We need to make people understand the consequences of depression. Your career, your family life, everything suffers,” says Dr Talib. It is time Pakistanis understand this.