Balancing Care and Life!

Recently, the renowned Malayalam filmmaker and screenwriter, K G George, passed away in a retirement care home. Following his demise, his family, especially his wife, faced significant criticism and cyberattacks from fans and the media for not caring for him at home. He had suffered a stroke a couple of years earlier, and his family has stated that they meticulously researched and selected a retirement home with a strong reputation for specialized stroke patient care, with doctors readily available. Their primary aim was to ensure he received the best possible care, not abandonment. It is indeed saddening that the family had to endure this unexpected wave of societal judgment and criticism during such a painful time.

Taking care of elderly parents is a difficult and emotionally demanding task that isn't straightforward. It becomes even harder when you live far away because you may not be physically present to provide daily care. Most of my friends are currently dealing with similar challenges as our parents' generation is getting older, with most of them now over 65 years old. Even if the elderly person is healthy, catering to their needs can be challenging because mentally, they may still feel they can manage their lives as before, but their aging bodies may not agree, leading to a struggle.

Caring for a loved one, particularly as a primary caregiver, comes with significant challenges that can impact the caregiver's own life in various ways. Below are some of the experiences that me and my mom had to overcome when my father was critically ill. While each family's situation is unique, there are common challenges and issues that families often face.  Although I'm not an expert, here are some of my thoughts on how to navigate these situations.

Emotional and Mental Well-Being: Witnessing a loved one's decline in health can be emotionally and mentally distressing, especially when you've known them as a strong person all your life. As caregivers, we may feel sadness, frustration, guilt, and anxiety, which can lead to burnout and mental health problems if not managed effectively. Therefore, it is essential to prioritize self-care, seek emotional support, practice stress-reduction techniques, and ensure that we take regular breaks to recharge and manage our well-being.

Physical Health: The physical demands of caregiving can take a toll on a caregiver's health. Lifting and assisting with mobility, managing medications, and providing personal care can be physically challenging, leading to exhaustion. Prioritize personal health by maintaining a healthy diet, regular exercise, and getting enough rest. Seek assistance from others or professional caregivers for physically demanding tasks.

Gender Roles: In many Indian households, caregiving responsibilities are primarily shouldered by women, which can result in a disproportionate burden on female family members. It is important to involve other family members and encourage a fair distribution of household and caregiving duties.

Time Management: Caregiving responsibilities can be time-consuming, leaving us with little time for personal pursuits, work, or other family commitments. Develop a structured schedule that involves multiple family members or professional caregivers. Prioritize tasks and consider delegating responsibilities to others.

Career and Work-Life Balance: Many of us have to balance their caregiving responsibilities with full-time jobs, which can be physically and emotionally demanding. This can lead to burnout and a strained work-life balance. Communicate with employers about caregiving responsibilities and explore available workplace support, such as flexible work arrangements or employee assistance programs.

Lack of Respite Care: Adequate respite care options are often lacking in India, leaving us with little opportunity to take breaks and recharge. Therefore, it is important to seek help from friends and family members to provide respite care, or consider hiring a professional caregiver to provide temporary relief.

Social Isolation: The demands of caregiving can often lead to social isolation. We may find ourselves with limited time and energy to maintain social connections and engage in activities outside of the caregiving role. Make an effort to maintain social connections even if it means seeking support from friends and family to free up time for social activities.

Uncooperative Patients: Caring for a patient who is uncooperative or resistant to care presents significant challenges for the family. It is important to respect the patient's dignity and autonomy while offering choices whenever possible. Seek their preferences and consider making adjustments to the care routine.

Stigma Around Institutional Care: There is often a stigma associated with placing elderly family members in institutional care, such as nursing homes or assisted living facilities. This can make it challenging for family to explore alternative care options. Educate skeptical family members about the benefits and necessity of institutional care when it's in the best interest of the elderly person. 

Financial Strain: Last but definitely not the least, caregiving can have financial implications, as it often requires hiring professional help, purchase of medical supplies, home modifications, or even reduced work hours or career interruptions to provide care. Seek financial advice to create a budget and explore available resources to manage caregiving-related expenses. 

Breaking Silence, Shattering Stigmas: Women's Health Awareness

 

I had thought long and hard whether to write this. In fact, this was a post I had been contemplating from my active blogging days more than a decade ago and finally got to write it now. This is to share my experience living with Polycystic ovary syndrome/ Disease  (PCOS/PCOD) which is a common endocrine disorder affecting women of reproductive age.  It is characterized by hormonal imbalances, irregular periods, and the formation of multiple cysts in the ovaries. It is a precursor for other serious conditions including obesity, type 2 diabetes, cardiovascular disease and endometrial cancer and its prevalence has been on the rise in recent years.

Teenage Turmoil

 My journey with this disorder began during my early teenage years. My mother had a transferable job, and during my teenage years, she was working outside the district, coming home only on Sundays. During one of her visits, she sat me down and explained about the menstrual cycle and gave me instructions on what needs to be done which according to her I might experience soon. The very next month I got my first period and managed it exactly as I was instructed. I also informed mom about it, and she was glad that she educated me just in time. But one thing she missed telling me and I was not aware of was that this bleeding would stop after a couple of days. Then one day I fainted and was rushed to hospital. A blood test showed extremely low HB count and that was when everyone around me realized I was bleeding heavily for 4 months straight! And that was just the first instance of the turmoil I had to endure in the coming years. Doctors were also new to this symptom at that time, and I was put on multiple experimental medications just to stop the bleeding.

 In a society where anything related to menstruation was considered taboo and impure, all the difficulties had to be hushed and endured silently. I remember the struggle I had in school during PT classes which I had no strength to attend but I could not take an exception as I was not comfortable talking to my teachers about it. Moreover, it was difficult to explain to others what I was going through, when I did not fully understand it myself. Then there was this excruciating pain that kept me awake all night and made me miss classes (even exams). After countless appointments and tests that spanned over 2-3 years, I was finally diagnosed with PCOD when I was 15 years old. The internet was not as prevalent then and so I had to turn to medical dictionaries to understand what it meant. Knowing what I was dealing with gave me a sense of relief, but it was also daunting to learn about the complexities of the condition.

Adulthood Challenges and Finding Support

The irregularity of my menstrual cycles made it difficult to plan my life, whether it was pursuing career goals or making social commitments. That was the time I had discovered travel as a passion, but it was difficult as I was unsure of when the heavy bleeding or pain would strike again. The unpredictability was frustrating, and I could not help but feel like I was missing so much if not for this situation. It was like putting my life on hold with no end in sight. (Though I have to say I have managed a lot of travels still with the condition)

The Internet gave me more insights into my condition but also amplified my fears, apprehensions, and uncertainties. That time I also realized I am not the only one in this space unlike what I had thought initially. I have close friends/relatives in the medical field and still it took me a decade even to talk to them about my experiences and that was a big relief. Slowly I told some of my travel mates so that they were aware of my difficulties during our trips. Sharing my stories and experiences provided a sense of belonging and acceptance and reminded me that I was not alone in this battle.

Symptoms of PCOS:

PCOS presents a range of symptoms that impact various aspects of a woman's health. Irregular menstrual cycles, often accompanied by missed periods or heavy bleeding, are a common hallmark.  Many women also grapple with weight gain and obesity due to insulin resistance, which may lead to an increased risk of type 2 diabetes. Conversely, excess weight can exacerbate insulin resistance and other PCOS symptoms. Polycystic ovaries, detected through ultrasound, are characteristic, but not all women experience this feature. Excess androgen levels contribute to symptoms such as hirsutism and acne. Mood disorders, skin issues, and sleep disturbances can further complicate the PCOS experience. Women with PCOS are at a higher risk for cardiovascular issues due to factors like obesity, insulin resistance, and metabolic syndrome. Irregular periods can lead to changes in the uterine lining, increasing the risk of endometrial hyperplasia (excessive thickening of the uterine lining) and possibly endometrial cancer.

It is important to recognize that while these symptoms are prevalent, not all individuals with PCOS will experience all of these issues. The diagnosis of PCOS is typically based on a combination of symptoms, physical examination, and diagnostic tests such as blood hormone levels and ultrasound. Treatment and management of PCOS can vary depending on individual circumstances and goals. Lifestyle changes, such as adopting a healthy diet and engaging in regular exercise, often play a central role. Medications may also be prescribed to address specific symptoms, such as regulating menstrual cycles or managing insulin resistance. If you suspect you have PCOS or are experiencing related symptoms, it's recommended to consult a healthcare professional for proper diagnosis and guidance. 

Managing PCOD and Acceptance

To manage my PCOD, I relied on a combination of medical interventions and lifestyle changes. Birth control pills helped regulate my menstrual cycles and reduce the heavy bleeding to some extent. But I also realized that lifestyle modifications played a crucial role. Regular exercise became a part of my routine, and I focused on maintaining a balanced diet to improve my overall health. While these changes did not cure my condition, they helped in managing the symptoms and reducing some of the emotional burden I carried. I also realized any change in my routine, food habits or even my mental state also adversely affected the condition and I tried to keep up with my routine whenever I deviated.

Living with PCOD has taught me the importance of self-love and acceptance. The societal notion of "good" is often intertwined with perfectionism and the pursuit of flawlessness can paralyze us. There were times when I blamed myself for not being "normal" or 'perfect' like others, but over the years I have come to understand that PCOD is not my fault, and it does not define my worth as a person. It has been a challenging journey, but I have also grown stronger through this experience. I try to be kinder to myself and acknowledge that my journey may be different from others, but it is still meaningful and beautiful in its own way.

While PCOD continues to be a part of my life, I refuse to let it hold me back. Through the years, I have learned to navigate the difficulties, finding strength in my struggles, and discovering ways to manage this condition. If you are going through a similar experience, know that you are not alone, and together, we can support and uplift one another on this unique path we walk.

# PCOS Awareness for a Healthier Tomorrow