Being a caregiver to her dementia-conditioned mum and to her late father has brought Dr Rinkoo Ghosh on an arduous and priceless journey. She tells us how she shifted the gears from one of surviving to one of thriving.
From Low Road to High Road
The last time I fed my dad his meal, was also the last time that he ended up in the hospital. Aspiration Pneumonia is a common cause of death for the elderly in Singapore and happens when food enters the lungs. In my Dad’s case, I fed him too much soup.
I’ve always regretted this ‘one huge, stupid error’ and it took me years to make peace with it. Within 12 hours of being admitted, the doctors told me that there was a very slim chance my dad was going to recover.
From being a daughter who was squeamish, sick and tired of caregiving, to changing my dad’s diapers after a major surgery with three metal rods in my broken arm, I said to the doctor, “No, he has got to be well. You have to help him get through this.”
I knew that my dad did not want to die. I had so much faith in him and I started praying really hard. By the will of God, he came out of aspiration pneumonia for me, just for a day and we walked down memory lane about whether I was going to get him his favourite ‘Chiltern Apple Juice’.
Six hours later, he slipped into a coma. My brother who flew in from England, being a doctor, knew that it was time and made the medical call to up the morphine and let my dad go with grace, so as to not prolong his pain.
Dealing with Dementia
Beyond pneumonia, my dad suffered from multiple health problems upon retiring in 2011 as a Professor at NTU. He had developed mild dementia and was prone to being verbally abusive.
While I was caring for my dad, my mum was slowly spiralling into depression, unnoticed. With every tantrum that my dad threw, every hospital visits he made with me for his condition, my mum became more and more withdrawn and numb.
When my dad suffered his first heart attack, my mother was away in India for a seven-day prayer retreat, her yearly respite. Instead of wanting to be by her husband’s side, she returned upset and angry, saying that my dad had taken away the biggest prayer of her life.
I was puzzled by her response at the time and quite angry. Had I attended the C2C Dementia programme by CAL much earlier, I would have picked up on these warning signs and got my mum the help that she needed, as well as the help and care that I needed.
The Many Roles of a Caregiver
Anyone caring for a loved one would know that caregiving is something that falls into your lap and does not happen by deliberate choice. Because my mum could not pull herself together, I took on the role of caring for my dad. I became a home nurse, ‘wife’, cook, cleaner. My brother was living in the UK so I had to take on the role of also being a son and daughter. I was monitoring my dad’s oxygen levels round the clock, pulling all-nighters, constantly fearful that he would not make it through the night. The seven years that I was caring for him, I lived my life in a state of fight, freeze, flight.
When my dad passed in June 2016, my mum was completely emotionally detached. She had no idea how to process his death, and refused to leave the house. She spent days in front of the TV and started to develop eye and skin issues.
I knew that my mum was my next priority, but somehow something had to give. I knew I could no longer give care the way I had for my dad. I was living in the short term, burning out and completely losing myself and valuable relationships along the way.
Mum’s depression slowly snowballed into vascular dementia and Alzheimer’s. She constantly misplaces things, has meltdowns when evenings set in, calls me by her sister’s name and forgets just about everything.
By now I also knew better to take stock of myself and consider my own well-being in order to continue the journey along with mum. I needed to invest in time for myself and carry on my life parallel to hers.
The Importance of Self Care
I engaged more therapists, enrolled her in day care and hired a great helper. I started taking at least four mini breaks a day, to pause, breathe and break away from my tight routine. This is something as simple as walking to the fridge for a quick snack, taking a power nap, or even 30 min walks to get some fresh air.
When I joined the C2C Dementia programme by CAL last year, I thought I had it down to a tee, but attending the programme made me realise I never really knew how to handle dementia in my parents, and what it truly was.
The programme completely transformed how I interact with my mum today – I learned to CONNECT more rather than CORRECT her all the time. I learnt to accept her reality and journey alongside her and appreciate what may come. More importantly, I am reminded that dementia folks are not really children. They are still adults with their own personalities, and they know and remember who they are despite their illness.
The biggest growth lesson I learnt along this caregiving journey was to be prepared to let go and believe that things need not be perfect. I say to myself daily, “It is what it is.”
I believe that the journey from “What will people think?” to “I am enough” starts with that courageous step.
I have found peace, achievement and success in other intangible things in life. I’ve found validation through the community of caregivers in CAL and the affirmations of people close to me who tell me how I have coped so well and cared for my parents, and that is more than enough for me.
Caregiver Resilience is Vital
I want to educate other caregivers about ‘resilience’ as a core skill that we must have – you must have self-empathy during each phase of your caregiving journey and not fall into compassion fatigue or what is called ‘empathic distress’. Don’t try to live your life as a martyr the way that I did. The distress is not worth it.
Recognise your breakability points, and learn to speak up and say, “Hey, I won’t be able to cope on my own alone, I need help.” Seek support. Meantime, nurture the physical, intellectual, emotional and spiritual side for your own growth and survival.
When you live an empathic life for yourself, only then will you be healthy, and only then will your loved ones and others start to respect you.
Story contributed by Caregivers Alliance Limited.