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Coping Mechanisms of Family Members of Ailing Patients

When you find out that a member of your family is suffering from a terminal illness, it turns out to be a devastating situation. Many of us don’t know how to react, what to say to each other or the patient or, what to do next. We wish we could just pretend like nothing has changed from yesterday, and behave normally. The exact same thing happened to Ram when he was told that his mother has been diagnosed with breast cancer. A taxi driver by profession, he was leading a simple and happy life with his mother. He has much love for her but communication has always been a slight issue between them.

The disease progressed from bad to worse over a period of time and his mother is now in the compassionate care of Karunashraya, Bangalore Hospice Trust. They offer free palliative care to advanced stage cancer patients. He, as a family member of the patient being admitted to the centre, was involved in the admission process which helped with:

  • making him aware of the characteristics of the disease & its impact on the patient
  • communicating available options at the care centre for the patient
  • making available the option of attending counselling sessions as and when deemed fit, keeping the patient’s condition in mind

There is no way that we can imagine getting through a situation where a family member is terminally ill, without a heads up on how soon to expect death. However, this is not an area of focus at Karunashraya where the doctors solely aim to improve the quality of life of advanced stage cancer patients and their family members, no matter how many days a patient might be estimated to live for. The staff actively listens to the patient and his dependents and offers support in a manner that is helpful in controlling the emotional situation in hand. It is but evident that for Ram, the idea of caring for his beloved mother who might pass on soon, is disconcerting and scary. Many of us would’ve rarely encountered that kind of a situation before. All our skills and prowess developed over the years might suddenly seem like they count for nothing.

All of the above might be true. However, there is no need to feel like all hope is lost. There are very many families that handle such predicaments fairly well. Their love for the ailing person invokes a desire to become strong and keep the patient happy in his/her last days. However, this is a very challenging phase. Palliative care centres are equipped to hand hold such family members through the entire process by providing psychological and spiritual support. Karunashraya has expert counsellors who help people in need, in confidence and suggest customized ideas to tackling problems.

Coping Mechanisms that family members of ailing patients could adopt:

When even the slightest of setbacks or problems at work or with friends cause emotional outbursts, it is but common to expect that repercussions of such events take the form of psychological manifestations. Following are some means by which these family members are advised on coping with their situations to help segregate the negatives from positives and focus on the positives.

  1. We side with the fact that communication is the key to resolving problems. This saying holds good in this scenario as well. Many family members talk to each other and confide in each other or in some confidantes, to feel lighter. Ram often talks to the doctors at Karunashraya who have advised him on improving his communication with his mother. She is worried that he won’t marry and will be left all alone when she is no more. He on the other hand does not clearly tell the doctors whether there is somebody and whether he even wants it or not. The doctors advised him to ponder over these aspects and communicate the same to his mother in a manner that will give her confidence that he will be alright.
  2. Another approach is suggested by doctors wherein they involve patients as well as their family members in certain activities that distract them from their pain and uncertainty of what the future holds. This at least causes temporary distraction.
  3. Many of us have faith in god or some form of divine intelligence. There are spiritual groups that bring together people from the same faith and take them through prayers and spiritual discussions that aim at health appraisal. It helps to keep ourselves connected to that faith through worship at a holy place or just spending a few minutes everyday, on prayers. Spiritual growth and connection with oneself makes for good grounding and maintenance of favourable mental health. You cannot give until you have! Counsellors at Karunashraya provide aid in this direction.Ram’s mother wanted to visit Tirupathi as she is an ardent follower of Lord Vishnu. The staff at Karunashraya made arrangements for her to visit the holy place but unfortunately she felt too weak to go ahead with the process.
  4. Some family members of ailing patients seek out support groups to meet people from various backgrounds and walks of life, all ultimately dealing with a similar situation of caring for an ailing, beloved family member. This makes for a platform where people can freely share their experiences, emotions and hardships and also cry as it is central to coping strategies to get the weight off one’s chest. All the people in such groups understand each other’s situations and circumstances well.

These mechanisms work differently on different individuals considering the backgrounds we might be from, the strength of the relationship shared with the ailing family member, our upbringing and environment exposed to over the years growing up. Although above mentioned strategies are generally adopted, often counsellors customize their application by these family members, for best outcomes.

Contact Karunashraya at info@karunashraya.com to know more details.

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Concept of Letting Go

A married, young woman named Susan is very close to her mother. So thick is the bond they share that they are like friends. Her father is almost always away making money so that he can provide for his family. Her brother and mother are the only people she gets to spend time with regularly and sees her father once in a while. Fate took a turn for the worse when recently she discovered that her mother’s health had taken a beating, and subsequent diagnoses revealed that she had cancer. A month into having been faced with this harsh reality, her loving mother is in her last stages of the disease. What could possibly be going on through the minds of both her children? They might at any time lose this person who is so precious to them. Envisioning a normal life for them in the near future seems a tad challenging. Will she and her brother ever be able to get over this loss?

Questions such as the ones above rarely have fixed answers. It is challenging to just let go and this is because we tend to connect instances and people in our lives with some sort of an emotion. Emotions as we know, are driven by the nature of the people involved or some past experiences with them. When even the loss of inanimate possessions such as clothes or cars can cause sadness, it’s not a surprise that we feel so strongly about people. Emotions are not only felt but are perceived from others as well. Having said that, with memories filled with love and compassion, it is but obvious that the magnitude of pain, hurt, frustration, anger felt by Susan and her brother will be immeasurable, almost inexplicable.

They are now in the hands of Palliative Care which is a field in medical care that improves the quality of life of patients who are suffering from chronic illnesses such as Alzheimer’s, cancer, Parkinson’s, etc. as well as their family members. Susan and her family sought help from one such centre called Karunashraya in Bangalore, that offers free care to terminally ill cancer patients. These centres adopt a holistic treatment approach wherein not only do they cater to the medical needs of the patient but also provide psychological and spiritual support to the patient and his/her family members.

Dealing with Grief & Loss:

Dealing with the loss of somebody we know can affect us to different extents depending on who they are. This is related to memories or experiences with them. If it is somebody very close to us such as a family member or a good friend, the grief over loss is much deeper than when we lose an acquaintance or a co-worker, when it might come as a jolt and cause brief sadness. Letting go of memories and emotions that remind us of the latter is fairly easier than in the case of the former. Different people have different ways of dealing with grief. Our lives might seem to have come to a standstill but the reality is that they must go on. So, what are some options we have that might help us deal with grief?

  1. We must try to acknowledge our emotions as this serves as a good release mechanism. For eg. Susan cried to her heart’s content while chatting with her mother’s doctor, at the palliative care centre. The doctor just sat beside her, held her and allowed her to cry. Crying is an example of acknowledging the emotions we might be feeling at the moment such as hurt, pain, anger, etc. All the same, some people like to be alone and connect with themselves in order to come to terms with the occurrence. It’s generally best not to stay confined to yourself for too long. Try talking about it with another person; it might make you feel better. This communication helps vocalize thoughts and contributes to the process of lightening the burden of the innumerable thoughts running through your mind.
  2. Channelizing our energy spent on questioning circumstances and ill fate towards something more meaningful makes a big difference. For instance, some people choose to immerse themselves in social service to spread awareness on their experiences whereas some others find socializing more, meeting new people and engaging themselves in regular routine activities helps them get past this phase. However, it is evident that we have to get past the acknowledgement stage to get here.Palliative care centres are completely equipped to provide customized care to both the patient and his/her family members through this challenging phase of pain and grief, and also continue to extend support to the family members after the death of the patient. 

    Only when faced head on with such a situation do we realize the worth of the one we are about to lose or who has passed and also of those who are still alive. We begin pondering over the purpose of life. With the right kind of support from palliative care centres, we can be enabled to gain inner peace and possibly even discern our purpose for this life.
    Letting go therefore, does not mean forgetting people and instances per se, but facing realities of life and death, accepting them and learning how to cope with them so as to be able to live a normal life, as would’ve been the wish of those who have passed on.

    If you want to know more about Karunashraya, write to info@karunashraya.org

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Care for Caregivers

Seema’s sister was diagnosed with the most dreaded disease, cancer, just when she began anticipating great festivities for her upcoming wedding. Having shared a very strong bond with her sister, as is obvious, she was devastated on hearing the news. Their parents are no more and they were being taken care of by their aunt and uncle. Thus, Seema was to take up the responsibility of caring for her ailing sister who was in her advanced stages of breast cancer. This is just one of the types of cases that the doctors at Karunashraya, a palliative care home for advanced stage cancer patients, handle on a regular basis.

Have you ever had an ailing family member in your vicinity day in and day out? What was the first thing you did when you found out about their disease? Were you scared? Did you have information on where they need to be given treatment and what type of treatment would be best? Even if not, try to imagine possible answers to these questions on behalf of somebody who has experienced this.

Palliative Care

Palliative care is a field in medical study that aims at helping patients suffering from chronic illnesses deal with their symptoms. Symptoms could be in the form of pain or physically visible manifestations such as wounds, scabs, etc. or even psychological, such as depression. Essentially a team of specialists takes care of individual cases by studying the condition of the patient and making available medical, spiritual and psychological support not only to the patient, but even to his/her family members who might require it. Karunashraya in Bangalore is the first such centre to be established that provides free palliative care to terminally ill cancer patients.

Care givers

Caretaking tasks are done with as much care and love, by caregivers who are supported by palliative care centres in the intricacies of care giving for patients suffering from chronic or terminal illnesses. They literally become the beacons of service-mindedness in their endeavour to deliver their “job”. Their lives revolve around administering medication, booking consultations with doctors and other specialists like dieticians, psychologists, etc. and in some cases, even feeding, bathing and cleaning their patients. They shift focus from themselves to their patient, with a smile. However, it is also important to understand that many caregivers cannot handle the burden of this news. Juggling their families, jobs and caregiving to the ailing patient often becomes a problem that requires solutions. Many a time, palliative care doctors and counsellors have to deal with cases where the caregiver is inching towards depression due to the situation in hand. Unfortunately, many of them also await the end of the ordeal. Whatever said and done, the caregivers have to ensure they are mentally and physically healthy in order to be at their best during such a challenging phase.

Personal Care is Important

We are always told to eat on time and sleep on time, take our medicines, if any, on time, regularly exercise, meditate to keep our minds calm and fill our minds with positive thoughts. The simple reason behind this is good health. Imagine the problems that care givers will have to face in case they do not regularly take care of themselves. They might feel exhausted , feel weak or fall sick. This is why it is reiterated that they pay as much attention to themselves while they are in charge of another person’s well being.

Seema was unable to sleep well for at least three weeks after hearing the news about her sister’s terminal illness. Her wedding was to take place in two months’ time and the burden of having to make arrangements without the help of her sister, and having to take care of her sister whom she loved dearly, didn’t allow her to get in even a few hours of peaceful sleep. She was worried she wouldn’t be able to do justice to either. On sharing her thoughts and feelings with the doctors at Karunashraya, they suggested guidance by a counsellor who hand held her through the next few weeks on how she can cope with her pain and frustration. This was going to prepare her so as to be able to take better care of herself.

Effects of Care Giving on the Health & Well-being of the Caregiver:

Unfortunately, many a time the caregivers tend to get adversely affected by their nature of work. Caregivers handle their ailing family members sometimes, for many years. This is bound to have some effect on their well being if they are not constantly aware of their emotions and behaviour. As were experienced by Seema, some repercussions are:

  • Sleep deprivation
  • Extreme emotions
  • Failure to eat or sleep well
  • Postponing their own health care
  • Stress & anxiety

When we start to wonder about why this happens, we begin to realize that these things sometimes happen without our knowledge. What then, might be the support available to caregivers?

Support Available to Care Givers

Many Palliative Care centres extend help to such caregivers so as to help them cope with their issues.

1. Psychological support – Consultations with psychiatrists and psychologists are made available to them to address their personal problems.

2. Peer Support Groups – Such groups tend to work in relieving stress and strengthening not only the bond between all these people from the same background but, even in personal strengthening. You might know that when you offer advice to another person, you feel you are in a better position than him/her.

3. Caregiver Helpline – Many palliative care centres have a helpline for the caregivers in case of emergencies. This way they can reach out for help when they do not know where else to go.

For more information, reach out to Karunashraya at info@karunashraya.org

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Cancer Awareness

Cancer Awareness-Let’s Be Prepared

Cancer is a word that is associated with fear, confusion, debilitating health conditions and possible loss of life. Especially in a country like India which has seen an exponential growth in the number of people affected by this disease in the past decade, one would imagine that awareness on this topic is stronger and more widespread now. The truth of the matter remains that whatever the extent of awareness created, we always fall short because the numbers have been multiplying at a rate too rapid to catch up to. We will all agree that except for superficial reading on the topic and gaining basic awareness on the types and causes, many of us don’t consider delving deep into the “what” and “how” aspects of this disease.

WHAT confirms a particular type of cancer?

WHAT are the symptoms that should be taken seriously with a possible alignment to existence of cancer?

WHAT treatment is available for cancer treatment?

HOW does one deal with the news of confirmation of cancer?

HOW can the treatment actually help improve the quality of life of patients?

These questions and many more still have vague answers. Wouldn’t you agree that it will be comforting to have the answers to most of cancer related queries, at the tips of your fingers? To meet this requirement, many cancer survivors turned crusaders harp about spreading constant awareness, which is well intended and extremely useful. We will be much benefitted from keeping abreast with the latest developments in the cancer field such as existent & new cancer types, symptoms of possible cancer, statistics of cancer incidence in different states and in the country, medical advancements in the field of cancer therapy and percentage of cancer survivors and their journeys. To give you a small analogy, we keep ourselves updated about the country’s budget though we might not all be mathematicians or accountants, because it directly affects us. It wouldn’t hurt to keep in touch with different types of diseases that the changing world and times bring with them, simply because they could directly affect us. It’s best to be prepared, or a more euphemistic approach would call for the word “awareness”. Let’s also not confuse ourselves by connecting this with a negative mindset. This awareness qualifies as a realistic approach rather than a pessimistic one, wouldn’t you think?

Don’t ignore unusual symptoms:

Any development in your body that is new, that you are not used to, should be a cause for concern. The reason that many people detect cancer only in the advanced stages is because they most often don’t suspect they have cancer. What then, can help with discovering it earlier? It is said that symptoms like persistent headaches, shortness of breath, blood in stools and spittle, chronic cough or hoarseness of the throat, lumps or growths on the body are some symptoms that don’t necessarily confirm cancer but could lead to it. Thus, more knowledge on these aspects will help us take the right kind of action at the right time. A stitch in time saves nine. Similarly, a disease related call taken in time can save lives.

Don’t be afraid to ask questions.

The next level of understanding comes from dealing with a person who has been diagnosed with cancer; it could also be you. There are no answers without questions. So, ask yourself and others around you questions; questions that are big or small, silly or intelligent, but just ask! When you do question, you wonder whether you/he/she can survive it. If so, how & for how long? Will it be painful? Where can we go for help?

Let’s embrace this topic and do away with imaginary stereotypes. It’s safe to say that an attempt at confirmation is better than an assumption.

Solutions to Cancer Related Symptoms

There are answers to all these questions. Many cancer care centres in India offer help in this direction. Palliative Care is one of the therapeutic measures that is fast gaining traction in the field of cancer studies. It is aimed at ameliorating cancer symptoms through reduction of pain and discomfort, medical procedures for countering depression and other psychological & physical repercussions. This procedure is definitely known to alleviate the quality of life of patients who are suffering from advanced stage cancer when many generally feel like all hope is lost. These treatment procedures involve a team of specialists who provide support not only to the patient but also to the family of the inflicted. The days to come can actually be much better than one might envision in the absence of awareness about such care and care centres. If problems can be created, solutions too can; it’s just a matter of making up our minds.

Early palliative care is an approach that is promoted by many palliative care centres. They suggest that when a life threatening disease is identified in its early stages, that much more care can be given by their specialists to keep the quality of life of these patients better than it might have been without their intervention.

Karunashraya in Bangalore is a centre that provides free palliative care to advanced stage cancer patients and has been operational since 1995. They deliver inpatient care as well as homecare through teams of well-trained specialists who customize medical treatment based on the patient’s condition. This organization has been supported by patron organizations and corporations who fund their activities. Its tie-ups with other hospices and educational institutions such as Severn Hospice, NIMHANS and Cardiff University, etc. facilitate strengthening of nursing training and improvement of education related processes and strategies.

If you know a terminally ill cancer patient who needs our care, or for any other information on Karunahsraya, write to info@karunashraya.org

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Cancer & Palliative Care

Cancer & Palliative Care – Can We Catch up?

In a day and age like ours, good lifestyle practises are comprised. We have breakfast that is instant, processed and easy to eat, on the go, work long hours while sometimes skipping meals, stay up late and grab just a few winks and most importantly, do not find time to exercise or meditate. We are caught up in a race for time, money, power and in general, life itself. When on the one hand technological advancements have made life easier, they have also successfully tipped the scale onto the other side with the plethora of side effects their existence brings with them.

It’s not of surprise that unhealthy lifestyles have paved paths for the onset of different types of diseases, cancer being most prevalent among them. We’ve all heard our friends or family members say that the incidence has exponentially increased over the last decade or two. Of course, there are other causes for cancer such as pollution, food adulteration, lack of hygiene, tobacco and alcohol abuse, and the list goes on.

Cancer Research

Cancer related mortality is a hot subject of research conducted in various universities the world over and many a time, in collaboration with the WHO. A study on the Indian cancer statistics conducted a few years ago reported a staggering 5,55,000 cancer deaths in India, in 2010 alone. Also, research led by Dr. Prabhat Jha, the Director for Centre for Global Health Research, St. Michael’s Hospital, Toronto, in year 2012 resulted in a model that is now being used as a reference to compute cancer deaths in India. A notable agency is the International Agency for Research on Cancer (IARC) that aids in recording cancer incidences in India. Similarly Dr. Jha’s model is used to study cancer mortalities in India. India Today iterated that cancer deaths worldwide were approximately 8.2 million in year 2012 and it’s been projected that by year 2020, the total number of cancer mortalities in the country will reach 17.3 lakh. With such daunting statistics that have been proven and projected through research, it is of great relief to come to the realization that advanced medical procedures are now available that have been found to increase the human life span by almost 30 to 40 years.

Organizations that specialize in palliative care for terminally ill patients are the new go-to centres for families with patients suffering from chronic illnesses. This type of treatment is not only directed towards alleviating physical symptoms but also aims to address psychological symptoms of both patients and their family members.

Palliative Care in India

In India, the utility of palliative care in improving the quality of life of terminally ill patients took long to be fully recognized by the law. Some key reasons were uncertainty and fear of use of morphine and other opium-based drugs for alleviation of painful symptoms, policies that were existent in the 1980s and 1990s-when it began to gain momentum-that strictly prohibited this practice, and a general lack of awareness and interest in the subject. The establishment of the Narcotic Drugs and Psychotropic Substances Act (NDPA) in 1985 further made it difficult to convince the government about the advantages of palliative medicine. Eventually, the central government initiated measures to implement it but its instructions to the state governments to soften their narcotic regulations fell on deaf ears. The NDPA has since been considerably modified over the years.

Palliative care approach slowly gained popularity in mid 1980s with the advent of “hospice and palliative care movement”. The very first hospice centre to be established in India was Shanti Avedna Sadan in Mumbai. Such care centres were also established in Gujarat in the 1980s following which Indian Association of Palliative Care (IAPC) was formed and till date is considered one of the milestones in the history of palliative and hospice care.

Today, Kerala is one of the states in the country to house maximum number of such centres, with Tamil Nadu and Karnataka following closely behind. Reports stated that less than 1% of our country’s inhabitants have had access to palliative care and this called for measures that are conducive to making it easily available. Continued advocacy by the palliative care community bore fruit in 2010 when the Medical Council of India accepted palliative medicine as a medical specialty and announced a post graduate course in the subject. This step was crucial to the expansion of this practise in the country.

Karunashraya

Karunashraya is a non-profit organization located in Bangalore, that recognized the need for a care centre for terminally ill cancer patients and made offering free palliative care to them, its mission. It adopts palliative care measures which constitute medical treatment procedures that reduce pain and other agonizing symptoms and improve the quality of life of such patients. The first hospice of its kind in India, their team aims to help patients who seek their support, get a life free of pain and one filled with dignity and peace. Having been operational since year 1995, they offer both inpatient care and homecare with the flexible option of the patient shuttling between the hospice and his/her home. Their work has been acknowledged by 15 awards. As is the case with many such centres, they extend psychological support through counselling, etc. even to the family members and other dependents of the patients.

The Team

It is run by a Board of Trustees who leave no stone unturned in dedicating time to this cause and ensuring its efficient functioning. The organizational structure is orderly and favourable to the mission of providing free palliative care in a manner that gives respect and dignity to the patients. The homecare and inpatient teams comprise well trained and dedicated doctors, multi-disciplinary nurses, physiotherapists, health assistants and social workers who give free palliative care including counseling and non-curative treatment. This endeavour is ardently supported by patron organizations and corporations who extend funds to Karunashraya.

Statistics

They have more than 150 staff members who diligently work day in and day out to tend to their patients in the best manner possible. They have extended inpatient care to as many as 14000 cancer patients and homecare to 3500 patients. Whether inpatient or homecare, their services are free of cost. A good number of volunteers get on board every year to lend their services to this cause.

Education & Research

As is primary to any organization that aims to deliver top quality services, even Karunashraya gives priority to education and research. Since the concept of palliative care is fairly new and was introduced in India only in the 1980s, they pursued and currently have tie-ups with reputed centres and universities such as NIMHANS, Severn Hospice and Cardiff University to leverage and foster education, research and training in the fields of hospice and palliative care.

Located on Old Airport-Varthur Main Road, its calm and clean atmosphere and dedicated workmanship have been testified by the loved ones of many patients who were under Karunashraya’s care.

www.karunashraya.org

Old Airport – Varthur Main Road,
Kundalahalli Gate, Marathahalli,
Bangalore – 56 0037, INDIA
Phone: +91 80 4268 5666, 2847 6133, 2847 6509
E-mail: info@karunashraya.org
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