Dementia is challenging, but no regrets…

Madam Zenaida Z. Reynes was diagnosed at 78 in  2008. She was 92 when she passed away in January  2023. Cynthia Z. Reynes, daughter and carer, recalls  her meaningful experience.

My journey into the world of dementia began in 2008. My mom was 78 years old. I was in my 40’s. At first, I attributed my mom’s forgetfulness or absent-mindedness to ageing. She would forget a friend’s name, misplace her money,  repeatedly ask the same question, or forget what I just told her five or ten minutes ago. I would reprimand her at times,  but it went no deeper than that.

When a good friend told me that my mom may just have a “little bit of dementia,” I felt so relieved that I ruled out Alzheimer’s disease. I pushed mom’s symptoms to the back of my mind and told myself that things would be better tomorrow.

Years passed. I noticed that my mom had difficulty finding words, identifying, or recognizing days of the week, the current month, and even recognising familiar faces. She would appear to be perplexed about her things or our home. I pushed her to maintain her independence. I preferred to think that she was just not trying hard enough or alternatively, that she was simply provoking me. I had plans. I had dreams. Obviously, I was in denial. However, her personality changes and cognitive decline meant it was time to visit a  doctor. When it was confirmed that my mom was in the early middle stage of Alzheimer’s disease,  the news broke my heart.

During the early to middle stage of the disease,   I had to deal with a lot of the typical dementia behavioural changes, including repetition,  paranoia, accusatory behavior, and aggression. My mom would often misplace things and would accuse our household helpers of stealing. Her many mood swings resulted in a high turnover of our staff, till it reached a point where it was just down to the two of us. I have gone many times without sleep because I tried to stay alert to my mom’s every need, especially at night. I would worry that if left alone, she would slip or fall, or that she would just be up the whole night.

However, it was her aggressive behaviour that really brought out the best and worst in me. I didn’t know then that I was experiencing temper meltdowns and was in one of the toughest stages of dementia care.  They say temper meltdowns happen; that I would not be human if I didn’t snap under extreme pressure once in a while. When we explode from the intensity of all the combined emotions and are overcome with guilt afterwards, we suffer not only mentally and emotionally,  but also physically. However, I learned that it’s best to accept the probability of a temper meltdown, as anything else would be unrealistic.

We know that the severity of Alzheimer’s disease is daunting. The burden is enough to drive you to despair.  The disease has the power to irrevocably alter the life of a patient, as well as the lives of the family members. As my mom entered the late middle stage, she continued to slide downhill. She went from having difficulty in finding words to making up words, before struggling to say anything at all. Finally, she lapsed into silence.  Aspiration pneumonia was a common occurrence until her cardiologist recommended having a percutaneous endoscopic gastrostomy (PEG) procedure. We knew  PEG feeding would not lengthen or improve the quality of my mom’s life, but there was no other way to address her nutritional needs.

The milestones of the elderly can be grim. Simple tasks like changing my mom’s clothes, combing her hair, or putting on makeup are just some of the invariable reminders of her decline. This reminds me of most kindergarten or nursery schools when they celebrate an important and exciting milestone for their preschoolers with a moving-up ceremony. I  can just imagine the joy and pride that parents feel upon seeing their child march onto the stage. I wish   I could say the same when we moved up to using adult diapers, nutritional food, diaper rash powder,  and baby bath soaps for my mom. But who am I to complain? My mom gave a lot of her time and energy, too, when she took care of me as baby. In time, I know the day will come when she will be bedridden, and the mere mention of the word “final”  or “late stage” would signal that my mom’s time is approaching.

In 24 April 2022, we rushed my mom to the emergency room. An x-ray and other laboratory tests showed that she had aspiration pneumonia again and she was having atrial fibrillation episodes.

“Ma’am, I admire you for your patience in taking care  of your mother. I just want you to know that she is now progressing to the very late stage of Alzheimer’s  disease,” the doctor says. It was difficult to stop my tears from welling up. I knew this moment would come, but I had hoped against hope that is would not be this soon. I slowly walked back to the room,  gave my mom a kiss, and silently cried. The clock was ticking and there’s no stopping it. We brought her home and continued the care – the best we could possibly give her. While we were able to celebrate  Christmas and New Year, my family was confronted with questions, such as “Will this be the last time?” and “Will we see her again next Christmas season?”

Sadly, it was at 12:35 PM on Friday,13 January 2023,  my mom took her last breath, peacefully at home. Though she had long been gone – Alzheimer’s did that to her – at 92 years of age, by God’s hand, this was a good time to rest. Caregiving may seem a thankless task, but I have no regrets caring for my mom. Our love and the bond between us deepened, and I believe all those challenges I face will bring rich life-affirming rewards.