Sunday, 25 February 2018

Parenting Your Parent – Stories of Five Loving Daughters

                                                                                                                             Roshan Jacob

My previous article was about “Compassion Fatigue”, and the case study I started off is about a woman named Krishnaprabha, who finally decided to quit her caregiving assignment’.  Imagining  our parents as feeble or infirm is a difficult thought to bear, but the reality is that millions of people, like Krishnaprabha are currently caring for a chronically ill, disabled or aged family member or friend. Majority of those caregivers are women. When caregiving is thrusted on you, many of us feel unprepared and overwhelmed, with no precedent to guide us through this challenging time. To help ease the isolation and juggling often felt by caregivers, I portray five brave loving daughters who share their stories, each highlighting the complex emotional, physical and financial tolls. This is a compilation of the experiences of few primary caregivers.

"I became a parent to my parents." Vidhya Mahadevan
Mrs. Mahaden relocated from Singapore to Bangalore where her parents live after retiring from Hosur. It was a bit strange for many of her relatives when they came to know that she was relocating  just to be with her parents in their old age. At times she feels it was too much for her but she continued with grit and determination. Let’s listen to her own words.

“When I realised that shuttling between countries is not sufficient, I decided to take a plunge. Caregiving to a parent starts gradually: initially a doctor’s appointment here, a lab appointment there, and before I knew it, I was managing all of healthcare needs and eventually, all of their life needs. No, not managing—let’s be specific, micromanaging. I became a parent to my parents. I made them ‘baby food’ and fed them by the spoonful; I tucked them in at night and often get up to change diapers. The caregiver can become sicker than the patient because she neglects taking care of herself. This is a silent epidemic.”

"I was always with my mother fearing something would happen if I weren't around”, Leila Thomas.
Leila explained how she cared for her terminally ill mother and continued her studies side by side. It was a harrowing time for her as they couldn’t hire a professional care giver due to their financial difficulty. Just before her mother diagnosed with cancer, her sister married and a whole lot of money was spent for her marriage. Then came the costlier cancer treatment, which literally eroded all their savings. One good thing happened is when her brother got a good opening in an MNC. Here is her story how she survived this harrowing time.

“My mother was diagnosed with stage 3 breast cancer in 2013. They told her she only had six months to live, she was sort of a fighter and she fought back aggressively. It's hard to get all in your feelings when you see someone so determined to live…. She turned those six months into five years. No doubt she was my superhero. After graduating college, I told her I was putting off design school, but she insisted it. She breathed life into my dreams and encouraged me to go into the world and live my life. During my first year of design school, I was her primary caretaker, and naturally I did terrible in school. I had professors and family tell me to quit, but I knew that’s not what mother wanted. Still, I lived in constant fear that something would happen if I weren't around. My second year of design school, my dad got laid off, which was a surprise blessing: He became her primary caretaker, so we’d rotate night time shifts and weekends with my aunts who stopped by during the day. My mother was never alone.”

"I had to attend therapy sessions to build the strength to deal with it all." Nirupama Koppikar
Nirupama came to me for counselling few years back as she was completely distraught as she thinks things are going out of hand. A bipolar disorder father, not so smart mother, insensitive siblings made her life miserable. Father and mother, both were central government employees and thus drawing pensions. Though money issues are nil, managing the parents was an emotional roller coaster.  She was vocal about her siblings attitude. In the bargain she lost her job and got into depression.

“My dad had severe bipolar disorder. Back then, it was not as well known as it is today and no one told us it was a disease until I came to you for a counseling. He was also diabetic and had heart disease, leading to by-pass surgery. He was verbally intimidating and abusive, and my mother was too ignorant to understand his illness, too weak to leave him, and never supportive. They had a very difficult marriage, and I was always caught in the middle because I was the only sibling living in the city. My brothers stayed away from the scene as if it was my duty. There were times where we had to have him institutionalized and treated, and I’d go from the hospital to work the next morning, or from the hospital, home to change, and then to work. He was so cunning, though, and he’d manage to convince his doctors that he was fine and could go home. I got so depressed I lost my job for almost one year. I did therapy during this time so I could build the strength to deal with it all. I finally decided to prepare a bunch of paperwork on his condition and calmly sat with him to explain everything one Saturday afternoon. ‘These are things that you do, dad; it's not that you want to. I just want you to understand,’ I explained. First time I saw him very receptive. That was the last time I saw him alive. The following Monday he had a massive heart attack and passed away, but I have a comfort in my heart from that conversation. I was 34 when he died and dealt with his illness for almost a decade.”

"I was forced to care my father but in the end It was satisfying”, Revathy Sukumaran
Revathy was pulled into the vortex of caregiving knowingly or unknowingly. Her father left her small family of three consisting of her mother and younger brother. Her mother, a nurse in the government services all alone did the parenting. It was bitter days and lot of resentment about her father’s waywardness. When Revathy heard that her father was diagnosed with cancer, initial thought was different but for all resentments aside, she decided to visit him after 13 long years. Here is her experience in her own words.

“I never thought I am going to be helping my father in his sick (death) bed. My dad was diagnosed with terminal lung cancer in 2016, and I flew to his home in Chennai to say ‘goodbye’ but ended up staying and taking care of him. The cancer spread faster than any of us anticipated, and while I was there for the long weekend, the doctor gave him two weeks to live. My dad didn't have anyone to take care of him, largely because of his wayward life style and had burned a lot of bridges. Story has many twists and turns and I need not say much. I was only 24 years old at the time, and I had no idea what I was doing. I need not have to show any mercy just because he never cared for us. He had so many different medications, difficulty breathing, and continuous pain. I slept only two hours or so at a time while I cared for him; it was insanely difficult. I resented having to take on a parenting role at such a young age for a parent who hadn't been an active part of my life since my childhood. We both wanted to be close but my mother wasn’t for it, and I wouldn't say that taking care of him fixed all that, but he did say he was proud of me and appreciated me. I wouldn't trade those last few days, even though they were the hardest of my life. After two weeks, I reluctantly put him in a nursing home so I could return to work (I lived in another state) and he died about a week later.”

" We tried to be strong for each other, even when we were crumbling inside." Rosalind D’Silva
I call her Rosie, and she met me in regard of an admission of her grandfather to our care home. Though her problems are too many one would admire her grit and determination. Rosalind is just 21 and doing her management studies and her father Thomas had a long battle with prostate cancer. Being the eldest daughter she has two young sisters and two aged grandparents and her mother to complete the family. Her problem was not her ailing father but it was her abusive grandfather, whom she hate. Her grandfather made a fortune by selling imported cars and those days it was sort of a monopoly business as he was a pioneer. Father joined him in his business and was doing well all these years. Grand father treats everybody as his slave and nobody can put up with him. Handling the health issues of her terminally ill father and an abusive grandfather was too much to handle. As a young girl, she juggled between hospitals, dialysis centres, and business. She came to me to address the ‘issue of grand father’. These are her words.

“My dad succumbed to death last year when he was 55. My father lived with us for 26 years, and much of that time he was healthy. The worst period was the six months preceding his death. I had lived with him and my grandparents since I was three years old, but my grandfather was no easy person with his bloated ego created hell for everyone. My dad developed prostate complications and had diabetic complications when he died. He had a doctor’s appointment the next week to discuss options for improving his condition. We all knew that we were fighting a losing battle. My mother was my rock. We, sisters clung to each other for support. As bad as it was, we tried to be strong for each other, even when we were crumbling inside. We felt both helpless and guilty when our dad passed away.  Finally, my 87 year old grand father outlived my father. Now I have to manage my infirm grand parents.”

Monday, 12 February 2018

Compassion Fatigue - Dont Wait Until it Hurts You.
                                                                                                                                      Roshan Jacob

Because of the demanding nature of working in long-term care, primary care givers, and many professionals including nurses, run the risk of suffering from burnout and compassion fatigue. By adopting healthy lifestyle choices and focusing on burnout and compassion fatigue prevention, you can minimize work stresses and their toll. The author is a leading social gerontology expert in the caregiving industry and he provides insight for both the caregiver and the recipient in this wonderful article. 

“To work out this plan, you need the support of your husband”, I told Krishnaprabha explaining the care plan of her mother in law. “If not better to place her in a care facility” I gave the second option.

“No sir, he will not understand and he always says that it is my duty, as if he has no stake in this”, Krishnaprabha complains about her plight of singlehandedly (mis)managing a rheumatoid patient with slight dementia.

“Three years of caring for my mother in law with dementia, I’m exhausted! What hurts worse is when a clueless husband tells you that the reason my mother in law is so bad is because I had neglected her. That was very ignorant. I worked, like a donkey, hard at home doing my family’s chores, and also worked years at jobs myself. I’m worn out, no more it is possible. But now-a-days, the sleepless nights really gang up on me. I can’t do this kind of work any more …. I can’t care anymore”  Prabha decided to call off her ‘caregiving assignment’.

You’ve heard of burnout, but may not have heard of compassion fatigue. As more and more family members like Krishnaprabha become caregivers, it is important to be learning about this term. A heavy workload and never-ending tasks may make you wonder if you’ve developed compassion fatigue. What is it and what can you do about it?
Krishna Prabha is a typical case of Compassion Fatigue. Caring too much can hurt. When primary caregivers focus on their infirm loved ones without practicing self-care, destructive behaviors can surface. Apathy, isolation, bottled up emotions and substance abuse head a long list of symptoms associated with the secondary traumatic stress disorder now labelled: Compassion Fatigue.
In general, Compassion Fatigue is a state experienced by those helping people or animals in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper.
My experience with ‘long term caregiving’ suggests that caregivers play host to a high level of compassion fatigue. Day in, day out, primary caregivers struggle to function in care giving environments that constantly present heart wrenching, emotional challenges. Eventually, negative attitudes prevail.
Compassion fatigue is caused by empathy.  But when there is involvement, it is the natural consequence of stress resulting from caring for and helping traumatized or suffering people. The more commonly used term, ‘burnout’ and compassion fatigue may overlap. The American Institute of Stress, defines this acute stress as “vicarious traumatization” because it’s caused by working with those who are suffering from the consequences of a traumatic event.

When you detach from the scenario, there will not be any empathy. Very few people can do this and most care providers have overwhelming feelings and thoughts when they witness the suffering of another and the desire to alleviate the suffering knowing very well that they are in a helpless situation. Often we confuse compassion with attachment, which is our own personal investment in the outcome of the situation.  In other words, when we think we feel compassion we are actually wrapped up in our own emotional needs rather than the needs of the other person. Mostly it’s attachment that leads to compassion fatigue, not compassion itself.
It is not only the family members who have compassion fatigue.  A perfect illustration involves Milan, Nurse Manager working in our care facility. She describes walking into the room of 87 year old, Muniratnamma, a new admission, and feeling stunned by what she saw—  an extremely thin, emaciated woman with severe bruising and discoloration on her arms and legs sitting in her wheelchair. The bruises were the result of severe abuse by her son and daughter in law. Milan described her first reaction as fear which turned to sadness for this woman’s condition and knowing that she really couldn’t do anything to change it. 
As part of preparing this article, I discussed this topic with two nurse managers from our care facilities. Both expressed a sense of being overwhelmed, mostly by the feeling that what stresses them most is beyond their control. “Typically, we entered nursing to make a difference in the lives of others, not realizing the extraordinary range of job duties this entails. In addition, we often have to face illness, decline, and the death of the very people we care so deeply about, and for whom we strive so hard to provide high-quality care. Residents and families need support, staff have their coping struggles, bosses can be demanding, and we are expected to step in and know just what to do. Sometimes we wonder what we do, why we do?”, Milan was open about her negative feelings.
“Nurses and care providers have demanding jobs, and at times it may feel like you are carrying the weight of the world on your shoulders. Given the pressures of care home life, we are susceptible to emotional, mental, and physical exhaustion brought on by continuous demands that include the needs of residents and families, staffing issues, reporting compliances, and surprise visits by management representatives”, Swetha adds.
As a social gerontologist, I suggest the family care providers, to consider the following before the compassion fatigue sets in:
·      Don’t pause your life.
·      Practice self care including, yoga, exercise, small breaks and socialising.
·      Consider placing the ‘patient’ in a care facility for ‘Respite Care’.
·      Consider a vacation.
·      Ask the other siblings or relatives to provide care for a fixed period in every year.
·      Get additional support, in the form of  home nursing.
·      If nothing works, then opt for institutionalisation.
·      Place interest of the patient as utmost important, rather your conveniences.
·      Above all, come to terms with the helpless situation you are in and be pragmatic when it come to long term care.
Prevention steps I would list out to help professionals get life back under control include the following. Few of this are applicable to family care providers. 
·       Start each day with a relaxing ritual such as 15 minutes for meditating, journaling, stretching, or reading something inspirational or interesting.
·       Adopt healthy eating, exercising, and sleeping habits.
·       Set boundaries to avoid overextending yourself at work.
·       Take a daily break and set aside time to completely disconnect.
·       Nourish self-creativity by choosing fun activities that have nothing to do with work.
·       Learn to manage stress.
·       Add vacation time to your life.
·       Care for your spiritual self.
Accepting the presence of compassion fatigue in your life only serves to validate the fact that you are a deeply caring individual. If you sense that you are suffering from compassion fatigue, your path to wellness begins with one small step: awareness. Appropriate awareness can lead to insights regarding past traumas and painful situations that are being relived over and over within the confines of your symptoms and behaviors. Healing begins by employing such simple practices as regular exercise, healthy eating habits, enjoyable social activities, journaling, and restful sleep. Somewhere along your healing path, the truth will present itself: You don't have to make a choice like I mentioned above the likes of Krishnaprabha. It is possible to practice healthy, ongoing self-care while successfully continuing to care for others.