Eight years ago, Baba was diagnosed with Type 2 diabetes at 62. Monthly check-ups. Regular drugs. He had a hard time accepting it. He lost weight. His legs swelled. Hypertension made it worse. Sometimes his sugar was too high for weeks; then it would crash.
Severe Hypoglycemia. Dangerous. Life-threatening. We can never forget how scary it was. It happened most often in the early hours, before dawn. During those episodes, his glucose dropped so low he couldn't move. He was delirious. Hallucinating. It felt like Baba was in the gray zone between life and death. We nearly lost him so many times. Close calls. They haunted us every day.
Over time, we got used to it. We checked his glucose before and after meals, and again at 3 AM. He was always weak. Tired. The doctor said elderly diabetics fall. Baba fell several times—in public, at the masjid during Friday and Tarawih prayers. He hit his back on the floor. To keep him safe, we asked him not to go far. To stay close to home.
Surprisingly, his labs—cholesterol, uric acid—were normal. His heart, kidneys, brain, lungs, and eyes functioned. It made us feel a little better. But his hearing worsened. We had to speak loudly.
August 2014. Five years had passed. Diabetes stole the man we loved. We missed our fit, strong, energetic Baba.
Early September 2014, a week after my graduation. Something was wrong with his stomach. He wouldn't stop throwing up. We took him to the hospital. An endoscopy showed small erosions. Nothing to fear. He came home after a few days. We modified his diet. It took three months to recover. Amazingly, his sugar levels became stable. No more hypoglycemia.
Everything was fine until February 2015. After Zuhr prayer, Baba looked confused. Anxious. He didn't know who he was, where he was, or what day it was. He couldn't remember us. He lost his memories. It was heartbreaking. It was a minor stroke. It attacked his brain. It wiped out his life.
Dementia followed.
At first, he talked non-stop about his relatives and friends who were already dead. Then, he became quiet. Withdrawn. Silent. He spent his days staring blankly into the distance. Aphasia. He couldn't find the right words. They were mispronounced. Misspelled. He couldn't follow conversations. His garbled speech made no sense. We didn't understand him.
When he tried to remember a name, he would knock his own head with his hand. Repeatedly. He’d ask to go home. He’d talk alone in his room. He’d repeat a word or an action over and over. He didn't understand he was ill.
He had no sense of time. No difference between day and night. He’d wake up at midnight asking for breakfast. He couldn't read the clock or the calendar. He couldn't distinguish the prayers. When Maghrib played on TV, he’d make wudu for Fajr. We had to remind him five times a day because he couldn't hear the Adhan from the mosque. After every salat, he’d say he forgot the words. He lost count of the rakat. Wallahu A’lam.
Baba forgot how to live.
He had to be bathed, dressed, and fed by Mama. I took him to the toilet so he wouldn't slip. He was unsteady but could walk short distances. He needed 24-hour care. Supervision. His personality changed. He became the most stubborn person in the world. He got upset for no reason. It was hard to watch him change before our eyes.
The disease took over. The doctor warned us:
* Even a short fall could be fatal.
* A minor stroke could lead to a major one.
I’ll admit—that first year was hard. It was like having a child. Talking about the past brought him happy memories. Every day, he tried to remember our names. Mama took him for 30-minute walks. We tried alternative treatments alongside medicine.
Nothing is easy with dementia. Even a haircut was frustrating. He didn't like the barbers; he said they had bad attitudes toward the elderly. We finally found a senior-friendly barber to come to the house. Baba became a picky eater. He’d eat the same thing for months until he was tired of it. We let him. He’d ask for a meal again, forgetting he had just eaten. Day and night, I had to stop him from trying to leave because he didn't recognize his home. Sometimes he forgot to pull his pants down before using the toilet. A big clean-up job for us.
Dementia caused unending heartbreak, but there were funny moments, too. I don’t mean dementia itself is funny. It’s a life-limiting illness. But there is another side. It would be funny if it weren't so sad. We found humor in the crazy situations. Baba said hilarious things. Sometimes we laughed; sometimes we cried. Sweet and sad at the same time. People think it’s just memory loss, but it’s so much more. There is a lack of awareness here. Some people find it shameful. Embarrassing. They show poor judgment. No one chooses this. It is Allah’s decree.
*
*
Baba needed two years to rebuild his brain. We were so happy. He could hold small conversations. He used the bathroom himself. He read the Quran and the news on TV. His speech improved.
He called me by my nickname again. He was the only one allowed to use it. It was super weird. He would use it just to tease me. It always brought a smile to his lips. He could joke and argue again. With faith, nothing is impossible.
Before we could breathe a sigh of relief, this past February—exactly two years after the first stroke—Baba collapsed. Right after lunch. His glucose dropped too low. Panic. Cries. We did everything, but his sugar wouldn't rise. He refused the hospital. He hated hospitals. He said he didn't want to end up in one.
The doctor said it was severe hypoglycemia. In his delirium, Baba tried to say everything would be fine. It was not his "time" yet. By the next evening, his sugar rose slightly. He tried to eat but had trouble swallowing. He was weak. Stiff as a board. He refused "protective underwear." He wanted to make it to the bathroom, but his legs were shaking. I carried him there. I helped him squat over the toilet. Mama and I stayed up until 4 AM for a month. We kept the faith that Allah would heal him.
It took a month, but Baba regained his strength. By the grace of Allah. His sugar remained constant. Allahu Akbar, Allahu Akbar, Allahu Akbar.
Every day was a gift. Every breath, every smile. Ramadan was his favorite time. He used to lead Tarawih. The first year after his stroke, he fasted the whole month. The next year, he missed the last ten days. This year, he only fasted one day. He joined us for sahur and iftar, but he didn't understand the time. We didn't force him. But we were grateful for another chance to spend the holy month together. Alhamdulillah.
In Betawi culture, Lebaran lasts a week. We dressed him in his best peci, koko, and sarung. We went to grandma’s house. He was so happy to visit his childhood home. He was excited but couldn't find the words—just a wide, vibrant smile. He had never looked healthier. As a senior in the kampung, people came to see him for five days straight. He tried to speak clearly. Everyone enjoyed talking to him.
It was the week after Lebaran. Life seemed good.
Baba woke at 5 AM. Hungry. Mama made him breakfast. She bathed and dressed him. I made him milk. He saw me and gave me a big smile. He wanted to watch TV. He flipped through the channels. He looked healthy. He finished his milk.
8 AM.
He got out of his chair. He walked unsteadily toward Mama. His hands were shaking uncontrollably. He didn't lose consciousness, but he couldn't speak. He couldn't move his left arm or leg. A massive stroke.
At the ER, before the MRI, tears rolled down his face. He was silently crying. He had never cried in front of us before. We tried to be strong, but we couldn't help it. They inserted an NG tube. He lost the ability to swallow. Dysphagia. That first day was filled with his frustration and anger. Shock. Disbelief. Fear. He pulled at the tube. He took off his diaper. It was so sad to watch.
The next day, the young doctor told me the truth. A huge blood clot on the right side of his brain. Left-side paralysis. Swallowing problems. Hard to breathe. His kidneys were affected. The doctor painted a bleak picture. No hope. Too much damage. He said if there was no recovery in a week, there wouldn't be any.
We were told to pray, make dua, recite Quran, and be ikhlas. I tried to choke back my tears. I failed. That was the day I wished had never happened. It felt too soon to give up.
For the first few days, Baba was responsive. He nodded or shook his head. He recognized Mama. I felt optimistic. But he complained of headaches. He wanted to go home. He wanted rice. He hated the tube. I will never forget the look in his eyes.
On Day 5, his sugar fluctuated. He needed insulin twice a day. He stayed in the hospital for seven days. All the relatives visited. It wasn't a pleasant memory. We bought home care equipment. A registered nurse on call. He was glad to be home.
We prayed for a miracle. Like Mama, I remained optimistic. But Baba grew weak. It crushed me. I felt horrible leaving him when he was wide awake, just staring at the ceiling. We sat by his bedside day and night. We never knew when it would be the last time. We recited Surah Yaseen, Ra’d, and Ad-Dukhan all day long to comfort him.
01:30 AM, Sunday morning. Exactly two weeks after the stroke. I woke up to relieve Mama. I checked his pressure and sugar. Normal. But he was restless.
02:00 AM. His breathing deepened. Sped up. Irregular. His hands and feet got cold. His lips and nails turned pale. He stared straight ahead. He didn't respond. I knew it was coming. Was it even real?
I woke Mama. She contacted my siblings. Tears seeped down her cheeks. I kept Baba’s lips moist with water and honey. I prayed for Allah to ease the pain. My siblings came. We hovered over him.
My brother recited the Shahada in his ear.
Allahu Akbar. Baba moved his paralyzed hand for the first and last time. He laid it on his chest. My brother put the right hand on top of it.
Baba breathed his last breath. He closed his eyes. No heartbeat. No rise of the chest. My life felt like it was falling apart. Sad. Angry. The doctor confirmed it. A straight line on the ECG. He removed the NG tube. Baba was no longer there.
So calm. Peaceful. Beautiful. Baba.
I can't believe the Ghusl was the last bath we gave him. Before they covered his face with the Kafan, we told him how thankful we were. He looked angelic. Handsome. We kissed him goodbye. Our final farewell. Baba, please forgive me.
Our Baba was a fighter. He had a strong will to live. He never gave in during those years, but this time, he decided to stop. He fought an amazing fight. He is pain-free now.
I never thought of myself as a caregiver. I was a teen when this started. These past years were physically and emotionally draining. Every day was hard. We often forgot to take care of ourselves. But I treasured every second. It wasn't wasted time. I was glad to do it.
Mama never left him for a second. I am glad he is at peace. I am grateful I was there when he left this earth. Now it’s just Mama and me in the house. My journey as a caregiver is over.
I’ve learned so much. Immense sadness, but valuable lessons. Baba taught me that even in the worst times, we find things to be grateful for. Thank you, Baba, for making me a stronger person.
He was a hardworking, funny man. His Adhan was my favorite sound. I kissed his hand after every Friday prayer. He hated me in skinny jeans. Even if he didn't know how to express love, we knew he loved us unconditionally. I was always his "little one." I am proud of him. He is with me in spirit. In my memories. In my prayers.
On this birthday, I am grateful for every breath. Thank you, Allah, for the best parents. May Allah grant my family health, happiness, imaan, and taqwa. Keep me firm on the right path. Ameen.
I wrote this for others on a similar journey. You are not alone. It is depressing. Tiring. Exhausting. But you are strong. Be grateful you can care for them. You will have no regrets. Don't listen to those who try to tear you down. People who haven't done it don't understand the mental toll. Take care of yourself. Eat well. If your parents are still here, cherish every moment.
“And among you is he who is taken in (early) death, and among you is he who is returned to the most decrepit [old] age so that he knows nothing after once having knowledge” — Al-Haj [22:5]
Please pray for my Baba. May Allah shower him with mercy and grant him Jannah.
Allahummaghfir lahu warhamhu wa ‘afihi wa’fu ‘anhu.
I miss you, Baba.
