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Caring for the caregivers: Need to recognize and combat stress

Post by on Sunday, September 5, 2021

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Patients are the main focus when it comes to dealing with them, especially those who have chronic, debilitating, life threatening or disabling illnesses like Severe Mental illnesses (Schizophrenia, Bipolar Affective disorder, Drug Addiction, Severe Depression or Anxiety Disorders, Intellectual Disability and learning disorders in children etc,) Dementia, Cancer and Parkinson’s disease. However, the problems faced by caregivers of such a patient population are least recognized and addressed.  Usually family members are key to the delivery of long-term care for patients and loved ones. Family members provide care to an aging family member, patients with specific illness such as mental health illness, children with learning disabilities, parkinson disease, dementia, and terminal cancer. The role of caregiving is no easy road. Caregivers provide a vital line of support to the loved ones and recipients of care that they dedicate time for. They take the primary responsibility for someone who cannot fully care for themselves, including those with mental or physical disabilities and a large portion of seniors.  Caregiver burden is not just being a load, pressure, an immense duty, and/or responsibility but the emotional, physical and financial toll experienced by these family members/ caregivers. Some feel guilty because they cannot do enough.  Others simply feel trapped by caregiving situations that have changed their life significantly.
Caregiver burden is a universal phenomenon and can present as:
?  Disruption  of family routines,
?  Psychological  distress,
?  Depression and Anxiety,
?  Guilt and self-doubt. [Parents raising developmentally disabled children wonder if they should have noticed the disability earlier. Guilt may be experienced when raising children without disabilities with disabled children—are we giving enough attention to each child?
?  Parents of disabled children experience financial challenges, discrimination, and couples divorce as a result of the stress of the situation.
?  Financial  hardship,
?  Work-related problems.
?  Fear and uncertainty about the future.
?   Risk  of heart attack and stroke
?  Even increased risk of death for caregivers, particularly those providing care to a spouse.
Stigma faced by caregivers especially of patients suffering from psychiatric disorders would add to already existing stress of these caregivers/ family members. One of the postgraduate students Dr. Harmanjeet Singh, a Postgraduate (DNB) trainee in Department of Psychiatry SKIMS Medical College Bemina Srinagar, conducted the study on the stigma and coping patterns of the caregivers suffering from Bipolar disorders and observed that stigma faced by caregivers of patients suffering from Psychiatric Disorders is higher in general and highest among caregivers suffering from Severe  Mental illnesses in particular. As a result of this and the caregiver burden, the family experiences a sequence of stressors that interfere in family unity, such as the diagnosis of the disease itself, the adverse effects of medication, the individual's inability to perform daily tasks, possible changes in economic and social status, uncertainty as to whether there is a cure, and the possibility that the disease may become chronic.
In this study, the majority of caregivers used avoidance, seeking social support and problem focused strategies. Collusion strategy was also frequently used. Coercion strategy was used less frequently.
The most common method of coping was consulting doctors which was present in 100% caregivers. Psychiatrists were available at district level and proper referral by counselors from NGOs   after proper counseling was present in every district. Another reason could be the awareness in caregivers through different mediums such as radio, TV, newspaper. Talking to friends/family and seeking practical help was present in 92% caregivers. Collusion was also used quite frequently in 83% of caregivers. Avoidant strategy i.e. ‘hoped for miracles/prayed for good times,’ was used by 88% of caregivers. This was followed by the use of various problem-focused strategies which was present in 80% of caregivers in which caregivers worked out problems calmly with family/friends. Coercion strategy was least commonly used which was present in 69% of caregivers.
There is a need to recognize the Signs of Caregiver Stress and Burnout to address them accordingly. The indicators of Caregiver burden are:
•         Anger outburst.  Caregivers often become angry at their loved one because they are sacrificing their own lives to care for them. Feeling angry at family members for not helping is also common.”
•         Emotional instability.
•         Lack of concentration that makes it difficult to perform familiar tasks.
•         Changes to sleep patterns,
•         Weight loss or gain.
•         Frequent feelings of worry, fatigue, and anxiety. “The stress associated with being a caregiver can have long-term negative consequences on health in the long-run.
•         Perceived lack of empathy and understanding from friends and family members.
Family members / Caregivers need to take care of themselves first so that they are psychologically and physically healthy to provide adequate care to their ailing family member or a loved one. The coping strategies that can help caregivers are:
?  Be  Honest and realistic about the diagnosis with yourself, your family, your child, and others.
?  Denial is a dangerous road and is not helpful.
?  Seek Knowledge and insight make the role of caregiving easier.
?  Quality time [Take the time for yourself to relax, recharge, and just focus on you.]
?  Get More Sleep
?  Focus on the Positive [Acknowledge and take stock of all the work you are doing. There is a strong association between a positive attitude and wellness.]
?  Eat well and exercise to keep your immune system up and healthy while combating stress.
?  Be social: Stay connected with the people, places, and activities that are important to you.
?  Get Organized
?  Preserve Identity [It’s a great way to maintain your sense of self. You are important, too!]
?  Be Your Best [if you consistently feel tired, are unable to sleep, have a change in appetite or feel depressed, talk to the professional]
?  Find the Humor. Humor and laughter are essential to caregiving situations
?  Embrace  the caregiving journey.
?  Meditation  
?  Relaxation techniques like deep breathing exercises etc can help one to cope better.
?  ACCEPT help. Know that it is imperative to seek help from others in similar situations and then to accept the help offered. 
Caregivers try to make everything all right and strive for unrealistic goals and end up exhausted and frustrated. It is very important for the caregivers to set realistic and achievable goals. “Perhaps your goal is to be sure that your patient is clean, comfortable and well fed. Caregiver burden is a real and growing problem for many caregivers across the globe. But have faith that you can solve problems and get support if you look for it and one most important thing is that “you are not alone.” Other family members, relatives and friends can assist these caregivers by taking some of the responsibilities to lessen their burden. Non-Governmental organizations (NGO’s) have a major role to act as a support system for such families and caregivers.
Dr. Abdul Majid, HOD Psychiatry, SKIMS Medical College Srinagar
Dr. Aijaz A Suhaff, Senior Resident

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