My Mum spent over 10 years using a walker and another 5 years completely bedridden on account of multiple medical challenges.Two surgeries, steel implants on her pelvic girdle, another fall leading to a thigh implant, a uterus removal and also a separate surgery due to water in her lungs.Through these numerous hospitalizations my dad stood beside her like a rock and provided constant care.He dedicated himself to her, if possible giving more than 100% of him and she became the center of our universe. Little did we realize that the primary caregiver needed care and attention too till it took a toll on my dad’s health and he left peacefully for the heavenly world.Although he remained relatively physically fit till the end, however the stress of caregiving had been having an invisible yet real impact on him. The real concern is that though it was too much for him, none of us had realized what he was going through.
I am capturing a few learnings from our story which could be helpful for those who are at the start or mid-way through their own caregiving journey…
- Care for the Caregiver: Caregivers need significant attention, counseling and help – in many cases much more than care recipient who have the medical fraternity to take care of them. This consideration and support is almost non-existent in India. Caregivers need to be counseled and guided to call out for help, which could then be provided.
- Poor understanding in the extended support structure: There is a lack of empathy and understanding from the larger family and friends. There could be a variety of reasons for their inability to physically help but the lack of emotional support and just empathy is stark. This ends up leaving the primary caregiver isolated and frustrated while dealing with the situation. Many well intentioned questions, or statements seem like judgments and only burden the caregiver more. Many times words are just not enough and help in a meal, a hospital visit or respite to rejuvenate or help address other roles of the caregiver are needed but not offered.
- Need for caregiver communities: There should be a focus on building caregiver communities in cities which would help enable communication, support, sharing of expensive/less frequently needed medical equipment, best practices dissemination and medical information. While there is a need for government support at some stage there has to be a community and social conscience which needs to be galvanized. The focus has to be on caregiver acknowledgement, support and a combination of volunteer and financial crowd-sourcing to make this happen.
- Frequent and Expensive healthcare with poor outcomes: Hospitalizations have financial implications of varying degrees and in the current set-up, some of the private hospitals and doctors are ruthless commercial engines. The need to recover costs of expensive equipment and to provide an aura of “best-in-class” cure/care is relentless. Often a battery of tests, treatments and surgeries are recommended using subtle emotional blackmail. The appeals to assuage guilt and creation of options ends up just not being effective in improving patient well-being outcomes. Not only are there huge financial repercussions on the families but also no dignity or respite for the patient or their families.
- Health Insurance or Financial Aid for the retired: Those above the age of 60 have very few insurance options, which makes it more difficult to avail of the realistic options that may exist. Not only do Insurance companies not provide full coverage, they also have various “terms and conditions” that apply.Even in an emergency situation,there is a total apathy of the healthcare and health insurance system leading to a lack of Medico legal options.
- Weak home care solutions: A bedridden patient without severe problems needing medical attention do however need home care 24 by 7. In the current situation we found that not only are the professional nursing/attendant workers expensive, their availability is poor. This is even more aggravated in the smaller, non-metro towns. Another real challenge is that they come with strict conditions and a stability rider.E.g.; most refuse to do the sanitation related hygiene needed for the patient etc. The variety of needs mandate different skills, attendant vs. nurse vs. helper however the service providers have a one size fits all approach.
Also while the challenges are true,unexpected help trickles in and also some caregivers are able to rise above everything and stand strong -As they say God has his way! Caregiving also has the benefit of passing on a legacy. While my dad left us with hope, strength and loads of inspiration and love, my mum has taught me to keep smiling and never complain. Most importantly caregivers need ears, a patient and empathetic listening and not advice or complaints!
I am an MBA & CPA with 18 Plus years of experience & have performed onsite Global roles across Asia Pac, Americas and Europe & South Africa. Dealing with clients across the Globe and working on projects across time zones has given me a 360-degree view of the Global workplace and other Businesses .
At heart,I am a small town bloke & someone who strongly believes in enjoying every moment of life & career – as I believe, if one chooses a job he loves then one doesn’t need to work even a day in his life. Thinking out of the box in unstructured situations and creating value for clients gives me immense pleasure. I am a strong believer in the power of dreaming big as nothing dramatic ever happens for someone with small dreams.