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 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.
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 firstname.lastname@example.org