Whenever someone talks to me about caregiving for dementia patients, it evokes in me emotions ranging from sadness, pain, happiness, stress, resilience, hopelessness and even joy. But the two emotions that are most relevant are sadness and resilience. Sadness because you see the person whom you know and love is slipping further away from you due to a mental illness in which you have no control. But this is offset by a new found resilience to find solutions to work through all the difficulties to make the patient comfortable.
I know this as I was one of the family caregivers for my mother who had end-stage dementia, and she had spent her final days in Assisi Home under palliative care before she passed on in August this year. We will never forget the personal grief and pain and the feelings of helplessness that the entire family, in particular my 88 year old father, had felt throughout the journey. In our hearts we know that although she had left us, we have fond memories of a kind, generous and loving mother/wife who was very adept at knitting but who had deteriorated to the level where she was unable to recognize or speak to us, to see clearly or even eat on her own due to dementia.
My family’s tumultuous journey started about five years ago when we noticed subtle changes in mum’s moods, behaviour and level of competence. Mum was becoming slightly forgetful, misplacing things, getting lost in parks and displaying erratic mood behaviour.
When the geriatrician confirmed that she had early stage dementia, we could not believe or refused to believe it as she was still knitting happily, going out with her friends , watching ‘wayangs’ and still able to do most of the basic activities of daily living.
But sadly after two years, the debilitating signs of dementia manifested itself. For no reason, mum began to display dementia temper tantrums such as pushing away food, pinching others, hurting herself and screaming. As dementia was still something new to us, we started to surf the internet and read as much as we could to prepare ourselves of what was to come.
I even typed out the Malay edition of dementia for my Indonesian maid, who looked after mum, to educate her that dementia is a disease that may not be curable but is nonetheless treatable by drugs and patience. In an effort to make my mum happy, my dad resiliently scoured around Chinatown to look for the rare classical Cantonese tapes from the 1950s and 60s which mum could remember and enjoyed. We also took out old family photos to try stimulating her memory.
We believed that being socially active may delay dementia so instead of letting mum stay at home, we put her in a knitting group in People’s Park Centre with her old friends and, subsequently in a Day Care Center, to keep her active and meaningfully occupied in bingo games, paint coloring books and do simple exercises in the afternoon.
This kept her busy in the day but the nights were heavy going especially when we heard her screaming in the night and early hours. Each piercing scream was traumatic and sad when you do not understand why the mother whom you have loved so much was behaving like this and worse still, you could not comprehend the vagaries of the illness. There was a sunken feeling of grief and loss that mum was slowly slipping away from our hands but we were not prepared to let go.
As her dementia worsened, she was in and out of hospitals either due to urinary tract infection or pneumonia. I vividly remember that each time her bedsores were cleaned and washed we could feel the stab of pain in our hearts but there was never a whimper from my mother who could not complain as dementia had robbed her of her ability to express pain.
The hardest decision in our lives was to put her into a hospice for end-of–life comfort care knowing that most of the elderly would prefer to die at home. In our hearts we were ready to let her go. We felt that she had suffered enough with all the tests and the visible needle marks on her poor hands and legs. It would be selfish if we were to keep her in her present state where she cannot eat, talk and walk; simple things we take for granted.
My siblings took turns to visit mum and we take What’sApp photos of her every day. We try to talk to her and our hearts take a flip whenever she turned her head to look at us. But we knew that even though she could hear us, this was probably a reflex response.
Sadly, mum died peacefully in the early hours of the morning of 1 August 2015 in her sleep. While we felt sadness and grief, the burden in our hearts was lighter as we knew that mum had indeed “run the full distance and finished the race”. As she was a Buddhist, we arranged all the funeral rites in accordance to her wishes to ensure that she would have a smooth transition to the other side. We even put into the coffin the favourite things that she would have loved to bring with her.
Having taken care of mum for five years, there is now a big gap in our lives. As family caregivers, we found that the learning curve to care for a loved one with dementia is a steep one filled with painful experience, memory and helplessness. But as we know that we had done our best, we hope that closure will come earlier so that our family can move on.
We love you lots, mum.
-MK, Senior Associate Manager of a Securities Company