I truly thought we had more time. I didn’t fully understand Parkinson’s and Alzheimer’s—slow, insidious diseases that quietly reshape lives. Simply put, both affect the brain: Parkinson’s disrupts fine motor skills, while Alzheimer’s causes memory loss and dementia. Early on, we accepted that we would eventually lose this battle, but we clung to the hope that “eventually” was still far off.
Looking back, there were pivotal moments when we could have been better prepared, though they weren’t necessarily mistakes. The gradual nature of Parkinson’s and Alzheimer’s lulls you into a false sense of security, making it easy to underestimate just how relentless these diseases truly are.
This blog is for sons and daughters still fighting these battles. It’s crucial to understand which stage you’re in and prepare for the most challenging phase—the severe stage, or endgame. Like in chess, it begins with the opening: the diagnosis and initial adjustments. The middle game can stretch over years as symptoms progress. But the endgame is the hardest—when your loved one may no longer recognize you, and memory loss, hallucinations, delusions, paranoia or ability to swallow.
I wish we’d had more guidance for facing this stage, so I’m sharing what we’ve learned in the hope that it helps you navigate your own journey.
Being Surrounded by FAMILY is important.
Popsy was surrounded by his grandchildren, and we celebrated every moment we could. We enjoyed special outings, attended mass with him, and made sure to order his favorite dish—bulalo—whenever possible. We procrastinated on challenging Popsy to billiards and duck pin bowling, and now regret not doing it earlier when he was stronger and his mental abilities were intact.
PANSOL is life.
Popsy taught us how to swim by throwing us into the deep end of the Pansol hot springs. I remember eagerly looking forward to our Pansol tradition every summer. To honor Popsy, we had a Pansol outing with the grandchildren, and he enjoyed it so much, just floating in the pool. It was a beautiful way to pass on the tradition to the next generation.
BALIKBAYAN War Chest
This disease is costly and can quickly deplete your financial resources as it progresses. Thank you to Uncle Ninong Kuya Lorenz from the US for supporting our parents financially and providing the resources we needed to fight Parkinson & Alzheimer’s. My brother Rommel also helped with occasional bulalo trips and covering hospital, caregiver and funeral expenses.
What Could We Have Done Better?
To Peg or not to Peg.
Earlier this year, we argued with my mom because she didn’t want to use a PEG (Percutaneous endoscopic gastrostomy) tube for Popsy. He loved eating, and she wanted to delay it, even though it was inevitable due to the disease affecting his swallowing. There was a time when he would violently cough after drinking water. We didn’t realize that even giving him liquefied food by mouth was risking it going into his lungs and causing pneumonia. Eventually, we had to take Popsy to the ICU, where they started feeding him via NGT (nasogastric tube). Unfortunately, it was too late, and he passed away from progressive pneumonia.
The neurologist had advised early on to use the PEG tube, which might have helped prolong his life.
Triple Locking the Doors.
Popsy’s condition worsened one night when, despite still being able to walk, he decided to leave the house on his own early in the morning. Even though the door and gate were double-locked, he managed to get out. Unfortunately, he fell on the pavement and broke his hip. After that, he was bedridden while recovering from the injury.
Make sure to triple-lock your doors and gates.
ICU was a mistake.
Since he was coughing severely and had a fever, we decided to take him to the emergency room, where they recommended admitting him to the ICU. When we visited during official visiting hours, he was crying, clearly unhappy to be alone—he didn’t want to die in the ICU. The nurses were just going through the motions, and we could feel his distress. His condition worsened in the ICU; his hands became bloated, and he developed more wounds on his back.
We decided to bring him home immediately and set up our own ICU to care for him.
Preparing for the END GAME
Set Up Your Own ICU at Home
Setting up at home can be costly, but it’s more affordable than staying in a hospital ICU, where your loved one may feel lonely.
Here’s a checklist for setting up your home ICU:
- Hospital-type bed
- Oxygen tank with regulator
- Feeding tube (PEG or NGT)
- Suction machine for phlegm
- Caregiver with 12-hour shifts
- Monitoring tools: stethoscope, blood pressure monitor, oxygen monitor
In the end, we were able to set this up, but it was a bit late, and his condition deteriorated quickly.
FINAL THOUGHTS
We love you, Popsy! He was smiling when we brought him home instead of staying in the hospital. Surrounded by his family, he was cared for by Tess, an amazing caregiver who treated our dad like her own. Salamat, Tess!
While our Parkinson + Alzheimer’s journey with our dad has come to an end, I know some of you are just starting or are in the midst of your own highs and lows with your parents.
Final unsolicited advice:
Presence is more important than the Peso.
Peso is important to prolong the patient’s life.
Prepare for the End Game — you don’t have time.
Live an Awesome Life with Christ,
Founder & Digital Creator, Our Awesome Planet
Disclosure: This article was written entirely by 100% human, with my own biases, opinions, and insights.
P.S. Let me know if you have suggestions, insights and tips to battle Parkinson + Alzheimer’s in the comments.
The post “I Thought We Had More Time”: Losing Popsy to Parkinson + Alzheimer’s appeared first on Awesome! - Our Awesome Planet.