I am a primary caregiver for about five years to my mother, 87, who was diagnosed with first stage dementia five years ago. Then, there were no obvious symptoms except occasional forgetfulness which my siblings and I attributed it to ageing process. However with passing years, we noticed a gradual deterioration. She becomes more forgetful, asking same question repeatedly within a short span of time. She is unable to make a simple decision, such as what to cook for dinner. Her mood would fluctuate and she gets moody and agitated easily. She has heightened sense of insecurity and is paranoid that others would steal her belongings. Her ability to comprehend and follow a simple story plot has now been affected, as she confused TV characters and could not follow the storyline in television dramas.
Being the breadwinner of the family and still single, the responsibility to caregive naturally falls upon me, partly through my filial obligation and also of necessity. I am the eldest with two married sisters. My siblings have families of their own, and they do help out now and then, when needed.
It is always stressful, coupled with office challenges, when mum is in her pendulous mood swings. It is a very frustrating situation when giving simple instructions to mum, although repeated many times, just does not work anymore. Sporadic outbursts of frustrations and anger come forth from both parties. It could be a very tense situation for me, when I come home to realise she forgets to prepare dinner or over-water the house plants, leading to a frenzy. It is made worse when I do have to perform night conference call and this eats into my precious time. Sometimes, the atmosphere could be ‘charged up’ when she stubbornly refuses to take her medication, probably out of defiance or helplessness, and she would just retire to bed very early in the evening.
All the above takes a toll on me emotionally, mentally and physically. As a result, my social life has been greatly impacted and to be honest, I have not been to many new places in Singapore, even shopping malls, although I am not the shopping kind. Weekend is spent doing errands like marketing and ironing to prepare for another week ahead. Sometimes I think that all my effort is futile knowing that her condition would only get worse in due course… This just does not give any comfort!
To reclaim my ‘sanity’ and the work-life balance, I have been involving myself in Silver Caregivers Cooperative Limited (SCCL)’s activities, attending some weekend classes as well as workshop and seminars. These activities constitute a form of respite for me. Luckily, my siblings would take turns on weekends to be at my home to keep mum company when I am away attending classes. However, I try to keep such activities short and come home quickly to be with her. She would be anxious if I am not home by late evening. If I am on overseas assignment, my siblings would help out to take care of her.
What I treasure most from joining SCCL, is that I am connected to people who are in the same boat as I am – caregiving to our loved ones. We have a chance to interact, share experiences, exchange ideas and give each other good moral and emotional support (especially during monthly tea sessions), knowing that I am not alone in experiencing the difficulties in caregiving.
I would remember vividly two occasions when my mum lost her way twice in her familiar neighbourhood in the evenings of April 2015, and was brought back by neighbourhood police upon being alerted by members of the public. One of the Co-operative members, Audrey, called and shared with me her experiences when she knew of my case. I am ever so thankful during those trying periods. I attended a talk at the ACES Club conducted by Dr Kalyani Mehta, a Gerontologist and Associate Professor of UNISIM titled “Positive Love”. There, I got an opportunity to meet up with the other caregivers who shared similar experiences and challenges as caregivers. In the process, it became very apparent to me then, that caregivers of a dementia person inevitably faces the same experiences and challenges.
I have started to empower myself mentally and emotionally knowing that this is a long journey and unless I am well prepared for it, I would not be able to care for my mother in a positive way. Apart from attending weekend classes or Co-operative activities as mentioned above, I am constantly reminding myself to take it easy and not be too hard upon myself or my mum – just go with the flow. My siblings do drop by some days of the weekday to spend an afternoon with her when I am in the office, but apart from this, she is all alone. She prefers this arrangement, as she is a quiet and introvert person.
Ultimately, I realise that unless one is in the actual caregiving process to our parents while they are still alive, it is just too difficult to comprehend or empathise deep-seated emotional roller-coaster journey experience. I think I am thankful that I have this opportunity as it dawns on me the human frailty. I have decided to keep myself healthy in any way to the best I could. I have also signed up for the Lasting Power of Attorney. My next step is to complete the Advance Medical Directive. All these, I hope I could help reduce the anxieties of my sisters if any when any crisis were to happen to me. I just want to be sure I have made my own decision to facilitate their subsequent arrangements. Hopefully, I live my life with no regrets and with a clear conscience…that I have performed my filial duties to the best I could.
-JH, mid-50s, Regional Manager of a MNC