A Difficult Privilege

Diaper changing time. Meal time. Milk time. Shower time. No, these are not parenthood. That was 23 years ago. It is caring for my 88-year-old Dad.

2 months ago, Jacqueline and I returned from Vietnam to Singapore with a single focus; to care for my Dad whose health is failing. It was only a few weeks ago that I had to be fully responsible for my Dad's care for the first time. Dad is like a 4-month-old baby. He eats, sleeps and poops. I have to undress him. Change his diapers. Shower him. Then powder him. Moisturise him. Check his vital signs. BP. Temperature. Pulse. Record it down. Give him his medicine. The rest of the day is the “same old thing"- checking on his BP, temperature, etc. More medication. Even more diaper change.

I was drenched with sweat after the morning routine. I put Dad back on his bed. I had to take a shower myself. In the shower, strange and conflicting emotions and thoughts surfaced in the privacy of the bathroom.

Caregiving is a privilege. However, it is also a difficult one.

It is difficult because it is physically taxing. Regular diaper change, daily shower and feeding can take a huge toil. No, he is not a 5 kg baby. He is a 50 kg non ambulant adult, totally dependent for all his survival needs. A baby would cry when hungry or sick, but my Dad with dementia does not. I wake him up, otherwise he sleeps all day. I feed him, otherwise he will not eat. I change his soiled stinky diapers otherwise he sits on them the whole day. A difficult privilege indeed.

It is difficult because it is financially draining. Medical appointments, occupational therapy and physical therapy sessions. Transportation. Medicine. He is 88 and thanks to the government’s subsidies, we pay a fraction of the cost. Still there are diapers to buy, the liquid thickener and the Rivastigmine patch to purchase. While waiting for some long-term care solutions, we engaged an interim caregiver. All these costs add up quickly. Dad does not have much savings. As a taxi-driver, he spent most of his productive days chauffeuring his children, his daughters-in-law, grandchildren to work or to school. So Dad did not earn much nor save much. Thankfully he has many children. Each of us pitch in financially. Still, a difficult privilege.

Visiting Dad at the hospital

Caregiving is mentally tiring. Every day is not the same. There are financial spreadsheet to update, phone calls to arrange for his physical therapy appointment then, to cancel because he is suddenly warded in the hospital for dangerously low potassium level. Upon discharge, a call to the Day Rehabilitation Centre to arrange for his next physical therapy. “Do I have to cancel again should Dad be admitted again?” It is mentally draining with so many details to coordinate. A privilege? I begin to doubt.

Caregiving is emotionally overwhelming. I am prepared for the physical, financial and mental strain. But I was totally unprepared for the emotional roller coaster that comes with caregiving.

Childhood memories or the lack of them surfaced while caring for him. I have never touched my Dad in such intimate ways. Where was Dad when I was a 4-month-old baby. Did he have to change diapers for me? No, he did not. There were no such conveniences as diapers in the early 70s.

It was very likely that Dad did not even change my diapers. Actually, Dad was never around. I knew this from stories Mum relates to me surrounding my birth. True or not? I really do not know. Old wives' tales maybe. Yes, Mum told me that Dad was not around on the day I was born and that he could not be reached or be found.

Mum is still very wounded from the tone of her voice as she recalled that day in tears. It was 5 decades ago. I can understand. Can you imagine your husband was not by your side when you gave birth? Mum told me that it was about a week later that Dad showed up.

My mind continued to spin in the shower. Was he surprised that I was born? Did he carry me and look at me with pride and joy? My SON! Or was I a burden? Another mouth to feed on top of 6 others all below 13 years of age. Mum was 32 and was already the mother of 7 children. What must be going through their minds? Overwhelmed? Stressed? Helpless? Despondent?

I was feeling melancholic as I sat with my Dad listening to 97.2 FM. The Chinese songs soothed my weary heart. Dad's eyes were closed, seated on his wheelchair with his bruised hands (after blood drawn), holding to the yellow stretched band which my sister bought for him to exercise. Dad, who looked a quarter awake and 3 quarters asleep on his wheelchair. I want to assume that he is enjoying the music. Is it a better quality of life?

“I am exhausted”, I told my sister. Half joking and half encouraging, she replied “It's not even a month and you are exhausted already. LoL” . I was not expecting that. I do not doubt her intention for she has a huge load herself to carry. My sister often has migraines from overworking herself with worries and caring for Dad. I know her heart is pure. In moment like this, silence may serve as a better encouragement than words. But in this Whatsapp era, one is compelled to “text something” for not wanting to sound rude. So I understood her intent of that text when I told her that I am exhausted. But I cannot help but feel unsupported.

Caregiving, unexpectedly, is an emotionally more racking experience. I certainly do not know that it would hit me that way. Maybe it hits you too. Maybe in many ways similar to mine.

Compassion and filial piety quickly gave way to self-pity. Who bears with Dad when it takes 20 minutes just to try to feed him 4 spoonfuls of water to keep him hydrated? Where were you when I had to clean up all the poop? Self-pity then transforms into self-righteous thoughts.

Suddenly, anger crept up and took hold of my heart. Come clean up poop before you tell me to weigh him regularly! Now I have to clean up all the shit, including the spreadsheet! You have no bandwidth! And I do?

Guilt quickly swells up. The truth is, all my siblings have done many things for Dad without anyone’s knowledge. They must have felt the way I do. I felt bad for having such thoughts.

But I cannot help feeling overwhelmed and unsupported. Mad and angry with my siblings. Then mad and angry with myself for being mad and angry with them.

Then feeling guilty. Why do I have these selfish and angry thoughts? Why can’t I be more patient and be understanding that each of my siblings have their own load to carry too? That they really have no bandwidth. That all the suggestions to better care for my Dad is simply because they do care. Nonetheless, it is exhausting!

Dad at home.

Caregiving is a privilege. But a very lonely and difficult one. But why do I do it? Simply because it is a real privilege, indeed.

To all caregivers, whether it is for your elderly parents, or a disabled spouse, a mentally challenged sibling, or a handful of troublesome toddlers, whether you felt called to serve or the need to serve fell on your lap, this is my prayer for you as I pray for myself, "It is with this in mind, I constantly pray for you, that our God may make you worthy of His calling, and that by God’s power He may bring to fruition your every desire for goodness and your every deed prompted by faith."