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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/

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

Don’t give up hope – Caring for the elderly

Farhanaz Zahidi September 11, 2016

http://tns.thenews.com.pk/dont-give-hope/#.V9_ShvkrLIV

 

geriatric-care

As people age, what can we do to improve their quality of life?
“With the bam of a motorcycle I suddenly became the head of the family,” says Junaid Ahmed Qazi. While caring for the elderly is seen primarily as something that women are expected do, Qazi is defying the norms because life left him no choice. As an only child, life changed for him some 20 months ago when his father, a healthy man in his early 70s, became victim of a hit-and-run case.
“Ten days before the accident we had both climbed five flights of stairs together.” What followed was a brain surgery, weeks in the ICU, and a nosocomial (hospital-acquired) infection his father caught, that left him invalid. “We believe he recognises us and has emotions. He wants to talk but cannot,” says Qazi.
For him the sound of his father’s voice is a far-fetched dream. Yet the optimist in him refuses to give up.
Qazi’s troubles are not unusual. The number of elderly people has risen globally with life expectancy having gone up due to advanced medical interventions. So has the corresponding number of their caregivers. The average life expectancy at birth of the global population in 2015 has risen to 71.4 years according to the WHO’s Global Health Observatory (GHO). HelpAge, a global network of organisations working with and for older people, predicts that by 2050 one in five South Asians will be over 60. The network states that South Asia is growing older faster than any other country in the world.
While HelpAge’s Global AgeWatch Index 2015, that ranks countries by how well their older populations are faring, rates Pakistan at 92 out of 96 countries, healthcare professionals and doctors feel the close-knit family structure in Pakistan mitigates cases of neglect and abandonment of the elderly.
“Caregivers are the unsung heroes when it comes to geriatric care. They are also underappreciated. When Parkinson’s disease or Alzheimer’s strikes a patient, the entire family is affected,” says Dr Nadir Ali Syed, a neurologist at Karachi’s South City Hospital who has been treating elderly people for 25 years. In his experience, if the quality of life of old people in countries like the US and Pakistan is compared, the elderly in Pakistan are much better off, provided their families are taking care of them. “The family is vital for elderly people. Generally, our elderly are not subject to neglect.”
With an increase in urbanisation and more Pakistani women joining the workforce, old homes and healthcare centres for the elderly is a discussion that is expected to come up more and more in the years to come. The need for geriatric medical care and for doctors specialising in the field has also gone up, and related challenges are multilayered.
“There is a lack of awareness and an acknowledgement of geriatrics as a unique specialty with special needs, health issues and care requirements. This exists both at the level of physicians, and at the governmental level. Caregivers often do not understand the needs of their aged family members and the stresses involved in caring for the elderly,” says Dr Saniya Sabzwari who specialises in geriatric care at the Aga Khan University Hospital in Karachi.
“Caregivers are the unsung heroes when it comes to geriatric care. They are also underappreciated. When Parkinson’s disease or Alzheimer’s strikes a patient, the entire family is affected,” says Dr Nadir Ali Syed, a neurologist at Karachi’s South City Hospital who has been treating elderly people for 25 years.
The patience and endurance of caregivers are put to the test in more than one way and, practically, providing satisfactory healthcare to the elderly is an expensive proposition. “The biggest challenge is financial. Nursing care and attendants at home cost a lot. For those who cannot afford to hire professional healthcare at home, the challenge is even more daunting. It becomes physically difficult to look after an invalid person,” says Asma Nazeer, who requested that her real name not be shared.
Nazeer does not want people to know that she served her mother who had Parkinson’s and related dementia for 10 years, since she feels that it will take away from her award. “I was the only one, as all my siblings are abroad, so they sent help in the form of finances and sporadic visits but basically it was just me for 10 years.”
Nursing care at home for the elderly who suffer from a lack of mobility is expensive. Yet more and more people are opting for it. “The biggest determinant for better geriatric care is affordability — to be able to pay for quality healthcare,” affirms Dr Syed.
Two round-the-clock certified nurses take care of Qazi’s father who, he shares, are pampered by him so that he does not have to go through the process of changing nurses and teaching them the ropes repeatedly. The price of nursing care at home is exorbitant but it still costs him less than the hospital would. His father’s room is now nothing less than the Intensive Care Unit of any hospital emanating the smell of medicines and sterilising liquids. Oxygen cylinders and the feeding tube through which liquefied food is transferred to his father’s stomach, like most elderly patients who are no longer able to eat by mouth due to multiple reasons, are maintained by nurses.
On average, depending on the level of expertise and seriousness of the patient’s illness, a certified nurse for a 12-hour shift costs anywhere between Rs1,200 to 1,800 or more, and are hired through an agency. The monthly cost can run into more than Rs100,000 if two staff nurses and two attendants are hired. “Many nurses are now turning towards attending to bedridden elderly patients at home because it pays well,” says 24-years-old Zaiba Kiran, a staff nurse who has been caring for elderly patients who are mostly bedridden. “We go through agents because it suits both the family of the patient and the nurse in case the nurse needs a day off or either of the parties has any complaints.”
Just like it is tough for caregivers, caring for debilitated elderly patients is not easy for nurses either. “With an elderly patient we have to be extra careful. They are very fragile. They can choke easily. We have to keep a constant watch over their vitals. Anything can happen at any time. It also takes more energy and time to learn how to deal with an elderly patient; they are often impatient like children.”
But perhaps the biggest side effect of seeing your loved parent become a shadow of who they used to be is psychological. “We saw the stages where my mother would hallucinate and there were behavioural changes. But the most painful was the stage when she could not even lift her finger. For the last three years of her life she was fed through a nasal tube,” reminisces Nazeer.
One of the jolts a family may receive is when they are told their loved one is now on what is called palliative or end-of-life care, a concept that is often not fully understood. The term does not mean that these are the final hours or days of the patient’s life. It means that the patient suffers from a terminal disease, and there is no hope of a cure. However the dying process may take years.
“With patients of Alzheimer’s the process may take seven to 12 years,” says Dr Syed. The aim of doctors and family, at this stage, is that the quality of life be improved and the patient be made comfortable. “In Pakistan you get drugs like heroine everywhere but intravenous morphine is not available to a dying patient to help relieve a dying patient’s suffering,” says Dr Syed, explaining the obstacles.
The goal, as Dr Sabzwari explains, is not longevity of life, unlike what families or patients want. “Most important is the quality of life.”
To see a loved one in pain takes its toll. “Till my father had the accident, I was a carefree guy. I can safely say I aged at least 10 years within days. I have lost a lot of hair ever since. I do feel depressed inside at times but I cannot afford the luxury to sit and cry because the responsibility of my family is on me,” says Qazi.
Luckily for him, his supportive wife has been his biggest strength. Even families of the elderly are psychologically impacted. “My six-year-old daughter is affected as well; she can’t understand why dada won’t play with her anymore.” Yet, Qazi refuses to give up on giving the best possible care to his father. “My father didn’t stop caring for me when I was a child and was totally dependent on him. How can I stop taking care of him?”
In Dr Syed’s opinion, one must not give up on the treatment and care of the elderly because a lot can be done to improve their quality of life. “A few years ago dementia was considered incurable and some of the treatments available now were not available then. Now, we can drastically improve the patient’s quality of life as well as slow down the dementia.”
The biggest challenge, then, is to not give up hope.

Dementia: Still Ammi

Published: May 18, 2015

“So what exactly is wrong with your mother?”

This is a question I kept hearing for seven years. Initially, I would reply, “She has let herself go after my father’s death” or that “she is depressed.” My responses have kept changing over time, as I learnt, unlearnt and relearnt about my mother’s condition, because what she was going through was much more than just melancholy or depression. The shock of my father’s death had triggered the progressive disease called dementia.

My mother showed no symptoms earlier in her life that could have indicated she could be prone to dementia. All I remember is that in her forties, she developed insomnia and began relying on sleeping pills. She often forgot where she had left the keys. There would also be bouts of paranoia wherein she felt she was being watched by someone or that someone was trying to harm her. My family and I shrugged them off, thinking she was overly cautious. Throughout this time, Ammi remained functional, meticulously managing her home, family and relationships.

Her dementia began progressing after an emotional trauma at a later stage in life, in her case the loss of a spouse and so, the deterioration began. Within months, she seemed to have aged by a decade. She was at a loss for words — literally. Having lost one parent already, we — my siblings and I, all adults — felt a double loss. We kept calling on psychiatrists and urging Ammi to stay strong. But today, we understand that she was never weak —  she was just not well.

Since then, her dementia has drastically progressed. While all the medical information one might require is available on the internet, personal details on how you can deal with dementia are sparse. It is amongst the most common ailments of old age but unfortunately goes undiagnosed and misunderstood in our society. While, I know some of my family members will disapprove of me writing about this private family ordeal, someone must speak out to create awareness regarding this debilitating condition. With this, I hope to offer support to patients, family members and caregivers who share what my precious mother and family went through and are going through on a daily basis. Since knowing Ammi, she would have wanted me to share anything that could help others.

demen

“You say she has dementia but remembers your name?”

How does one explain to an unassuming friend or relative what exactly dementia is. Most people don’t take it seriously unless you call it Alzheimer’s disease. We have all heard about Alzheimer’s so I suppose it rings a bell but in reality, the two conditions are very different. According to the National Institute on Ageing (NIA) USA, dementia is a mental disorder that affects communication and physical performance adversely while Alzheimer’s specifically hampers the parts of the brain responsible for memory, language and thought control.

Memory loss is, nonetheless, one of the main aspects of dementia. It isn’t just the names and faces of people that a patient forgets. For instance, one of the key tests our geriatric specialist (an old age specialist, in layman terms) ran on Ammi involved asking if she remembered which day it was and if she could tell the time on the clock. When she couldn’t, her dementia was confirmed. With one’s thinking affected, basic functions start getting compromised, specially language, vocabulary and communication. A patient knows what an object such as a spoon or a glass is for and uses it as well but has forgotten what it is called. He or she knows if she has a headache but has forgotten to call it a headache. They know what they feel like eating but forget the name of the fruit, vegetable or dish.

But what is truly amazing is that in most cases, the patient’s consciousness does not alter until the very last stages. Even if Ammi struggles with my name, she knows who I am. Social skills remain intact until the advanced stages so even if they don’t recognise visitors, patients generally make normal, pleasant and general conversation. However, they do realise something is not quite right with their memory and try to cover it up with generic responses. Often when someone asks Ammi if she recognises them, she smiles and says “How could I not?” She has forgotten their name but is aware that it is someone she knows and that it would be rude to admit she didn’t recognise them.

In a strange way, it is comforting to know that your loved one still feels the important things in life: a connection with other humans and the Almighty. The ability to laugh, cry and experience pain and joy are blessings that stay with the patient until the dementia progresses beyond limits. 

“I have forgotten how to walk!”

In the advanced stages of dementia, things start getting serious with various symptoms (sometimes irreversible) manifesting themselves. For instance, one morning Ammi stood up and wouldn’t walk forward. “I don’t know how to walk,” she kept repeating while we urged her to take a step, eventually giving up and letting her return to bed. Ironically, the next morning, she was walking again, with support as per normal. The doctors attributed this to a “mini stroke” which admittedly frightened us but we were assured that such episodes are common during old age. Over time, we learned to watch out for sudden changes in Ammi’s personality, behaviour or body language for possible signs of mini strokes and to deal with them accordingly.

A patient suffering from dementia often forgets how to chew and swallow. They can no longer gulp down food and water as normally as they used to. The result can be not eating enough, which may lead to wastage and eventually starvation if nutrition is not given to the body by alternate means. Another complication of this is Aspiration Pneumonia, which happens when food particles enter the lower airways, causing repeated bacterial infection. The patient can also lose bladder control and forget how to exercise basic functions like passing stool or urine, which we take for granted. The result is urinary tract infection, among many other, related problems. 

The caretakers, in this process, learn new concepts, and their vocabulary increases. Words like dignity sheets, silicon catheters, zinc oxide and peg tube are new to us. Before my mother went through this, I did not know who a geriatric doctor was. A more difficult word we learnt is “Palliative care” which is specialised care for serious patients with ongoing illnesses. Some doctors will, when you ask them what it means, say that it means “end of life care”. But that is not so in all cases, and many patients successfully come back from the palliative care stage to rehabilitation. In Pakistan’s urban centres, certain hospitals have begun home based geriatric and palliative care systems so that the patient can get the best care at home.

“But life goes on.” Or does it?

Life does not go on — at least not for the caretaker of someone with a progressive mental illness. Just recently, I texted a friend who has experienced a similar situation with a loved one and although we hadn’t spoken in months, she immediately understood how I felt. I told her that I was breaking and she said, “It does things to you. It alters you in strange ways.”

Truer words have never been spoken. The helplessness of a parent — someone whom you have grown looking up to — is perhaps one of the worst heartaches in the world. Not only must you watch them suffer but the child inside of you dies bit by bit, no matter how old you are.  Accepting that the person who raised you is no longer functional or needs an attendant or a nurse for the most menial of tasks is extremely difficult. Accepting that someone who loved food will never again eat by mouth due to the risk of aspirating and must be fed via a feeding peg in the abdomen is tough. Accepting that they will be bed-bound and catheterised for their remaining days takes a toll on you too.  In the midst of managing nursing staff, memorising sheets of medication and managing doctor appointments, one forgets that life was ever normal.

There is also that unsaid fear when a voice in the head whispers: What if you inherit your mother’s condition too? Over time, you learn to not dwell on the thought, pray to God that that does not happen, and move on.

It took me a while to accept that in so many ways, my mother is exactly like an infant. We make her do exercises and play games with her that will improve her motor skills. We sing her nursery rhymes and songs that she enjoys. Her eyes light up when she sees us. Her needs, now, are very basic, just like a child’s. But through it all, she still is our Ammi.

A few silver linings and things to do 

Here is what you can do to help yourselves and your loved ones through their illnesses: 

•  Balance and manage your work and families well and take care of yourself physically and spiritually, otherwise you end up being of no use to your loved one.

•  Breaks are a must, as is taking turns if there is more than one caretaker. It is at times like these that one thanks God profusely for the family values that help us stick together.

•  Try to spread awareness about dementia and similar disorders among your social orbit. There is still a general lack of knowledge and social attitudes need improving. For starters, tell visitors, politely, that they cannot discuss the patient’s condition in front of them.

•  Choose good doctors who can be reached at any time. Have numbers and contacts of nursing staff ready. Emergency medicines and numbers of ambulances are a must.

•  Try and develop an inclusive culture when it comes to older people in society. They need not be isolated and confined to their room.

•  Spend as much time with them as possible. Company, care and encouragement can result in surprising improvement.

•  Learn to retain the good counsel and support you get from understanding friends and relatives. Ignore patronising attitudes and unsolicited advice. Each patient is different and each family’s situation varies.

•  It helps to stay positive in such a situation and remember the good times. Keep telling yourself that your loved one has, for the most part, led a full life and that their present state doesn’t define who they are or were. Faith and prayer helps you stay strong.

•  Talk to others who have been through the same. You will realise that many other people have gone through this and you are not alone.

•  Cherish this time. It will pass, as will the exhaustion. Enjoy the physical warmth, love and the prayers of your parent.

•  Most importantly, do not give up on someone just because they are old. Even if you cannot cure the disease, there is so much you can do to make them feel comfortable and feel loved.

Understanding dementia 

Dementia is caused when the brain cells fail to communicate with each other. Damaging of nerve cells that may occur in several areas of the brain is why dementia affects people differently, depending on the area that is affected. However, even though the symptoms may vary, some of the common ones include:

Cognitive changes:

– Memory loss

– Difficulty communicating or finding words

– Difficulty with complex tasks

– Difficulty with planning and organising

– Difficulty with coordination and motor functions

– Problems of disorientation

Psychological changes:

– Personality changes

– Inability to reason behaviour

– Inappropriate behaviour

– Paranoia

– Agitation

– Hallucinations

Published in The Express Tribune, Ms T, May 17th, 2015.

http://tribune.com.pk/story/886462/dementia-still-ammi/

My mother’s dementia & what that has meant to me…..In Dawn. Com

http://www.dawn.com/2011/10/01/my-mother-has-forgotten-a-lot-but-not-all.html

My Mother Has Forgotten A Lot, But Not All

Published in dawn.com: http://www.dawn.com/2011/10/01/my-mother-has-forgotten-a-lot-but-not-all.html
My mom…..well…..what should I say but say that she forgets. And that she is not quite the person she used to be.
It started in her early 50s….maybe earlier……but that is my earliest memory of it.
She would keep her keys and forget where she kept them every day, besides other stuff.

Sometimes when I forget stuff expectedly as a result of juggling too many things in my mind perhaps, my daughter gives me a worried and intense look. She fears for me that I may have inherited the condition from my mother and my grandmother. Me and my siblings all secretly fear it for ourselves, we confess to each other in our “blood meetings” (where we hang out, once every six months at least, sans spouses or anyone else). 
It’s funny how we don’t really fear inheriting my dad’s heart condition or my mother’s arthritis. What we fear most is inheriting her forgetfulness, which basically became full-blown and stared at us in the face after we lost our father and her companion of more than 5 decades. It accelerated at an unbelievable pace after my father left us. It seemed my mother had held back letting her memory slide downhill. She did not recognize life without him I guess. He was her friend, guide, confidante, the love of her life, the pivot of her existence. Two people, almost antonyms of each other, had one of the most beautiful companionships I have witnessed in my life. Once he was gone, she perhaps felt letting go of her memory was the best option……this would leave her in the long-gone past……retrograde amnesia. The present or recent past she was not so interested in.
Does she have simple dementia, as she is now 70 plus? Is it an effect of “mini-strokes” as her geriatric doctor suspects? Or is it Alzheimer’s? And if it is Alzheimer’s, is it SDAT (Senile Dementia – Alzheimer’s Type). I don’t really know the exact answer, because by the time it was discovered, the doctors felt there was hardly anything that could be done about it, and so invasive testing was avoided.
Causes could have been one or more of many. Psychological trauma, inheritance, nutritional deficiencies.  Psychogenic amnesia or psychogenic fugue, if it is that, often occurs due to a traumatic situation that individuals wish to consciously or unconsciously avoid. 
Fancy terms don’t really matter to us. All we know is that it has not been easy. It has not been easy to see my vivacious, extroverted, friendly mother stare at an object for hours. It has been one of the toughest things to see my mother struggling for words that define simple objects……my mother who remembered Urdu and Farsi (Persian) poetry with a passion and would quote the greats often. Whenever I write well, if I do, I know it is because she emphasized so much on my reading habits and writing style. Ammi had the most beautiful handwriting. Today, when for any emergent documentation she has to sign, it takes her 10 minutes for a single signature. She labours over it and I feel helpless seeing that. When my beautiful mother who had an elegant wardrobe and was known for her sense of style cannot recall when she last changed her clothes. When she who organized dinners for and cooked for scores of people forgets whether she has had breakfast an hour back or not. My sister, who lives abroad and comes every few months, shared that she fears that the next time she comes, ammi may not remember her name.
Luckily, the dementia has not been able to take away the most important things. Like the way my mom’s face lights up when she sees her children and grandchildren. Like her insistence on saying her prayers on time, even though she has forgotten the exact Arabic verses. Like her basic nature of always staying thankful and saying “Shukar Allah ka (Thanks to Allah)” whenever someone asks her how she is. Like her sense of humour and her unexpected witty jokes which are always on spot and still make us laugh. Like how she still knows, without my saying, that I am upset or unwell. Like how her inherent calmness and sweetness of nature still remains intact, untouched, unaltered.
We are fortunate that her memory loss has not been very bad. It could’ve been worse. She has good days and bad days. And over time, we have somewhat learnt how to handle it.
But do people remember the important stuff? Or is their forgetfulness more serious than my mother’s dementia?
Have they forgotten that one does not choose to have amnesia or dementia, just like one does not choose to have other illnesses like heart disease or cancer or a hemorrhage? Why is then the acceptability of other illnesses more than neurological or mental illness, may it be Alzheimer’s or Schizophrenia or dementia or chronic depression? Perhaps because these illnesses alter behaviour. And alternate behaviour threatens us because we do not understand it. And when we do not understand something or find it different, we marginalize it.

My mother may have dementia but she remembers and knows enough to know when someone is warm to her and when not. She knows when people talk in front of her about her as if she is not there…..When they just exchange pleasantries with her but do not have the time, patience or inclination to sit with her and make conversation. When their faces have weird reactions when she says something a little off centre simply because her brain has weakened just like someone’s heart or lungs may weaken. 

This is not just true for her. This is generally true for how we treat elderly people. We marginalize them instead of including them in everyday activities and get-togethers. Add to it dementia and people have even lesser understanding unless someone close to them has had it. They also do not know what the caretakers and the family are going through.

The mind is as much a part of our body as is any other…..it is time we took time to understand the illnesses of the mind. Only understanding can develop empathy.