August 16th.. The day when I turned a year older. Just like any other normal day; nothing special, but there's something different this year. This is my first birthday without my dad. Baba passed away a month ago on July 16th after a long struggle with diabetes, dementia and a massive stroke. I really wanted to write something about my caregiving journey in this blog from a long time, but I couldn't do it. I know it is better to keep it to myself, but after much thought, I decided to publish it today. This post is dedicated to the memory of my beloved Baba in heaven.
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| My Baba, posing on a camel during Hajj 1992 |
Eight years ago, Baba was diagnosed with type 2 diabetes at age 62. He went for a monthly routine check-up to the doctors and started taking prescription drugs regularly. He had a hard time accepting he was diabetic, though. Baba lost much weight and he had swelling in his legs for the first few years. Hypertension just made matters even worse. Sometimes his blood sugar was too high for a few days or weeks then went too low. Severe Hypoglycemia, something dangerous and life-threatening that we would never forget how scary it could be, occurred most often in the early hours of the morning before dawn. An episode of hypoglycemia often occurred within hours. During that period, his blood glucose dropped so low he couldn't move. He was unable to treat himself and couldn't do anything without assistance. He got delirious and experienced hallucinations or delusions. It felt like Baba was in the gray zone between life and death. We nearly lost him so many times; there had been too many close calls, truly frightful that it haunted us everyday. As time went by, we got used to this condition. Everyday we needed to check his blood glucose before and after meals, and at 3 am in the morning. Diabetes also made him feel weak and tired all the time. Doctor said elderly with diabetes had such a high risk for falls. Baba fell several times in public places and injured his back as he hit the floor, mostly during Friday and Tarawih prayers in masjid. It is said that an elder who has fallen is at higher risk for a future fall. As a way to keep bad things from happening, we asked him not to go out too far or spend long hours away from home.
Based on lab results, surprisingly, his cholesterol and uric acid level —you name it— were within the normal range. The vital organs like kidneys, heart, brain, lungs and eyes also still functioned properly. This made us feel at least a little bit better. However, his hearing loss gradually worsened so we had to speak more loudly than normal.
August 2014, hard to believe the first five years had passed. We realized that diabetes stole many aspects of the man we knew and loved. How we missed our fit, strong and energetic Baba..
A week after my graduation in early September 2014, there was something medically wrong with his stomach because he didn't stop throwing up, so we took him to the hospital. He eventually had an endoscopy done and it revealed the presence of small erosion in the stomach, but nothing to be afraid of. After several days in hospital, doctors then allowed him to go home. We modified his diet again and it took about three months for him to recover. Somewhat amazingly, his sugar levels had become better controlled and remained within normal limits. No more hypoglycemic episodes.
Everything was fine until one day in February 2015, after Zuhr prayer Baba looked so confused and anxious. He didn’t know who he was, where he was, and what day it was. He couldn't remember any of us. He lost his memories. At the time, yes, this was heartbreaking enough. It turned out later that Baba had had a minor stroke. It attacked his brain function and yes, stroke wiped out every memory of his life. This brain damage led to dementia. During the first few days after his stroke attack, he couldn't stop talking about his early life like his relatives or friends (who had already passed away). The next week, we started noticing changes with him. He soon became so quiet, withdrawn and silent. His days were spent staring blankly off into the distance. The stroke had caused aphasia; a condition that makes it difficult to read, write or speak (a language disorder). As a result, he had some difficulty with speaking and finding the "right" words to say. He knew what he wanted to say, but it just didn't come out right. Certain words were mispronounced or misspelled. Baba couldn’t follow conversations because he didn’t understand what other said. Sometimes his garbled speech made no sense. We didn't understand it either.
If he was trying so hard to remember something/someone's name, he would keep on repeatedly knocking his own head with hand. Sometimes he would keep asking to go home, some other times we heard him talk alone in his room (common problems faced by persons with dementia). He would repeat a word, question, or action over and over again. He didn't understand that he was ill.
As mentioned before, Baba had no sense of time of what day it was. He couldn’t tell the difference between day and night. He would wake up in the middle of the night and think it was morning asking for breakfast. He got confused looking at a clock or calendar. He couldn't distinguish between the prayers (salat), as well. When Maghrib adhan was broadcast on TV, he would make wudu and get ready to perform Fajr prayer. So we had to remind him five times a day because of his hearing loss, he couldn't hear adhan from the nearest mosque. After every salat, he would say that he forgot some words of salat and losing count of rakat.. وَٱللَّهُ أَعْلَمُ
Like other stroke patients, Baba forgot how to do the ordinary tasks of daily living. Following this, he had to be bathed, dressed, fed (all by Mama) and needed someone to take him to the toilet (to prevent slipping in the bathroom). He was somewhat unsteady on his feet, but he could still walk short distances unassisted. By then he required 24-hour constant care and supervision. Due to the nature of old age and his stroke, Baba also underwent personality and behavior changes. He became the most stubborn person in the world and got upset so easily for no apparent reason. It was so hard to watch a loved one changed before our eyes.
His life had dramatically changed forever. The disease truly had taken over him. Doctor gave him some more medicine and vitamins, and we were warned about two things:
1. When an elderly man with minor stroke and dementia falls; even short falls, it could be fatal and deadly.
2. A minor stroke also may lead to a "major" one in the near future.
2. A minor stroke also may lead to a "major" one in the near future.
I will admit — that first year was hard. It was like having a child, to be honest. Talking about the past and his large family could bring up happy memories and good feelings to Baba. Everyday, he would try to remember our names and read something simple. Mama always took him for a 30-minute morning walk in the first six months and it really helped a lot. Several alternative treatments were used along with conventional medicine to help treat his terminal illness.
Nothing is easy when dealing with dementia, even small thing like getting a hair cut could be pretty frustrating. We didn't know whether something went wrong at the barbershop or he just didn't like the cut he requested, but he said some barbers had a very bad attitude towards elderly. We finally decided to find a more senior-friendly barber to cut Baba's hair at home once a month. Baba also became a picky eater. He would eat the same thing over and over for months until he got tired of it. It's common for someone with dementia, so we just let him had what he wanted (we were obviously still concerned about choosing the right foods for diabetics). He might ask again for a meal, having forgotten he already ate. Every day and night I had to keep Baba from trying to leave because he didn't recognize his home. Another problem was sometimes he would forget to pull his pants down before squatting over the toilet (sorry it sounds gross). Then it was a big clean up job for us.
Dementia, of course, had caused unending heartbreak to us, but it could have its funny moments, too. Please, I don't want people to think dementia itself is funny. No. It is a life-limiting illness, it damages the brain. However, there is always another side to everything. Dementia would be funny if it were not so sad. Even in the midst of those horrible days, we found the points of humor in crazy situations. There were so many hilarious things that Baba had said and done. Sometimes we laughed about it, some other times it made us cry — dementia could be sweet and sad at the same time. People think dementia is just a memory loss, but it is so much more than that. Some come to view it in a positive way, while others see it as a mental illness due to the effects the condition has on the brain. There is still a lot of lack of awareness about dementia in our area. There are still many people —even well-educated ones— who find the disease strange, shameful and embarrassing. What they do, though, is show poor judgement. Those people need to understand what dementia is. No one wants to see their parent, or a loved one, go through this and there is no shame in having someone in the family who struggles with it. What happened is apparently no one's fault. No one chooses to have dementia. Everything that happens to anyone is Allah's decree, including illness.
**
As a right-brain stroke survivor, Baba needed two years to "rebuild" his brain after stroke. We were so happy that he finally could hold a small conversation and understand what other said. Baba could walk around and used the bathroom himself. He could read Quran and the news headline on TV. His speech was also improved. He called me with my nickname again which, by the way, he was the only one allowed to use it. (My nickname was super weird. He used to call me just to annoy me and it always brought a smile on his lips 🙂). He also could joke and argue. With hard work, patience, and faith, nothing would be impossible.
Before anyone could breathe a sigh of relief because things finally got better, this last February, two years exactly after the first stroke attack; Baba collapsed on the floor, in front of us, just moments after he had his lunch. His glucose level suddenly dropped too low. That afternoon, everyone got panicked. Everyone cried out. We did everything we could, but the blood sugar didn't seem to raise. We tried to get him to go to the hospital, but he refused. He really did hate hospital. Once he said he didn't want to end up in it. We asked his doctor, he said Baba suffered severe hypoglycemia and he told us that everything would get back to normal again. In his high state of delirium, Baba tried to say that everything would be fine and it was not his "time" yet. By the next evening, his blood sugar increased a little even though it still below the normal range. He eventually accepted solid food, but had problems swallowing. He was so weak and stiff as board that we had to help him sit up in the bed. He refused to wear protective underwear (I wouldn't use the word 'diaper' in front of him) that he prefered to try to make it to bathroom, yet he had trouble walking and his legs were shaking. So when he wanted to pee or poo, I carried him directly into the bathroom and helped him squat over the toilet. Mama and I were staying up until three or four every night for a month.. Through it all, we maintained the faith that Allah would heal him and restore his health. It took a month, but Baba slowly recovered and began to regain his strength; by the grace of Allah. His blood sugar remained relatively constant, too. اَللّٰهُ أَكْبَر اَللّٰهُ أَكْبَر اَللّٰهُ أَكْبَر
Everyday, we were thankful for Baba's life. Every moment that he had to breathe, to smile, to walk, and to talk was filled with grace. Ramadan was his absolute favorite time of the year. He used to lead Tarawih prayer every Ramadan before his stroke. During the first year after stroke, Baba could fast for a full month. The following year he did not fast for the last ten days. Unfortunately, this year he had only fasted one day—two days before Eid after he realized that the day was Ramadan. He always joined us for sahur and iftar, but he couldn't care less about the Ramadan time. We never forced him to fast due to his illness as the fast was too heavy a burden for him to bear. But even so, there is always something to be grateful for.. and it was a gift to us from Allah, the gift of another chance to live through the holy month of Ramadan once again and to spend more time with loved ones at home ..اَلْحَمْدُلِلّهِ
In Betawi culture, Lebaran lasts to a week or more. That day we got him dressed with his best peci, koko shirt and sarung. Just like any other year, we went to our grandmas' houses (both on parents' side) on the first day of Lebaran. But this year, he had never felt so happy in the whole of his life to visit his childhood home. He got really excited, but couldn't find the words; only a blank stare that morphed into a wide vibrant smile. For the sake of Allah, our Baba had never looked happier, healthier or better and best of all, he had lots of energy to greet prople who came to our place. As the oldest in his family, Baba was considered a senior in our kampung. For five consecutive days —from early morning to late at night— countless relatives and all of the family members were coming over to stay in touch. Of course everyone was very glad to see him. He tried to speak clearly and asked them everything he could remember. It was also good to know that everyone enjoyed talking to him.
Everyday, we were thankful for Baba's life. Every moment that he had to breathe, to smile, to walk, and to talk was filled with grace. Ramadan was his absolute favorite time of the year. He used to lead Tarawih prayer every Ramadan before his stroke. During the first year after stroke, Baba could fast for a full month. The following year he did not fast for the last ten days. Unfortunately, this year he had only fasted one day—two days before Eid after he realized that the day was Ramadan. He always joined us for sahur and iftar, but he couldn't care less about the Ramadan time. We never forced him to fast due to his illness as the fast was too heavy a burden for him to bear. But even so, there is always something to be grateful for.. and it was a gift to us from Allah, the gift of another chance to live through the holy month of Ramadan once again and to spend more time with loved ones at home ..اَلْحَمْدُلِلّهِ
In Betawi culture, Lebaran lasts to a week or more. That day we got him dressed with his best peci, koko shirt and sarung. Just like any other year, we went to our grandmas' houses (both on parents' side) on the first day of Lebaran. But this year, he had never felt so happy in the whole of his life to visit his childhood home. He got really excited, but couldn't find the words; only a blank stare that morphed into a wide vibrant smile. For the sake of Allah, our Baba had never looked happier, healthier or better and best of all, he had lots of energy to greet prople who came to our place. As the oldest in his family, Baba was considered a senior in our kampung. For five consecutive days —from early morning to late at night— countless relatives and all of the family members were coming over to stay in touch. Of course everyone was very glad to see him. He tried to speak clearly and asked them everything he could remember. It was also good to know that everyone enjoyed talking to him.
It was the week after Lebaran and life seemed good. Baba woke up earlier than usual. 5 AM... He said he was really hungry, so Mama made him breakfast. Then she bathed and dressed him, just as always. After bath, I made him a glass of milk. He saw me and a big smile came to his face as I brought the milk to his room. He wanted to watch TV, so he brought his milk to our living room and turned on the TV. He flipped through the channels to find something to watch, like he normally did. Our Baba looked healthy and happy. He finished his milk and seemed to enjoy watching TV even though he didn't seem to understand anything. I thought it was going to be a sunny Sunday morning, but it wasn't. 8 AM.. He got out of his chair and walked unsteadily as he tried to approach Mama. His hands were shaking almost uncontrollably, but he didn't lose consciousness. We brought him to his room, he still could walk and we asked him to say something, but he couldn't say anything. Baba was confused and suddenly he couldn't move his left arm and leg. He couldn't get out of bed. He was unable to wake up and get up. We soon checked his blood glucose level and blood pressure, both were within the normal range. We were certain he had a massive stroke. He was taken to the ER and getting ready for CT scan and other radiology tests that I can't remember. The moment before he entered the exam room, the tears came rolling down his face. He was very emotional, silently crying for a couple of seconds. He had never cried before, not in front of us at least. We didn't know exactly what he had in mind, we tried so hard not to cry but we just coudn't help it. After the exams were completed, an NG tube was inserted by the nursing staff. Due to dysphagia, he lost the ability to swallow and required feeding tube to eat. First day in hospital, all I saw was Baba's frustration and anger. Shock, disbelief, fear, acceptance.. He was restless and agitated, pulling the NG tube out or taking his diaper off. It's so sad to watch him go through this.
The next day, a young doctor explained the test results to me. He let me see and hear all results, either good or bad. He said Baba suffered a massive stroke and there's a huge blood clot in the right side of his brain, resulting weakness and the inability to move the left side of his body. The stroke had rendered him with swallowing problems (dysphagia) and hardly breathing. The lungs became harder to function properly and his kidneys also were being affected by diabetes. The doctor had painted a very bleak picture of what could be. I felt as if my heart had been cut out to hear that there was no hope for our dad as there's way too much damage for him to ever be back with us like before. He said if Baba hadn't made any recovery at all in over a week, there wouldn't have been any at all. All we could do was pray, make dua, recite Qur'an for him, ikhlas and prepare ourselves for the worse. I asked him if he thought Baba would ever be able to recover, and his honest opinion was it would take years and with very little progress due to his age and other illnesses. I tried desperately to choke back my tears as I left the doctor's room, but I failed. That was the day I wished had never happened. I was so confused and really helpless. It's just too soon to give up on him, I thought. A doctor may know a lot, but not everything. Nonetheless, other doctors said there was definitely hope although it would take longer period to recover.
The first few days after the onset of stroke, Baba was still responsive. I asked him questions and he responded could only say a couple words although it was difficult to understand what he was saying; sometimes he would nod or shake his head for yes or no, some other times he just gave me a blank stare. He still could recognize family members, especially Mama. I was feeling very optimistic at that time that recovery would be our next steps. However, he was always complaining of a headache which is probably due to brain swelling. He tried to tell us that all he wanted to do was go home, demand to be given food and drink, eat rice and get some rest. Unfortunately, doctors said he would need tube feeding for a longer period of time. Unable to do anything to your loved one is very hurtful that I can't put it into words. I will never forget the look in his eyes, and what they appeared to be saying to me. On day 5, his blood glucose levels became unstable and fluctuated from too high and too low, so he needed insulin shots twice daily to control blood sugar. He stayed in hospital for 7 days and Alhamdulillah, all family and relatives got to see and visit him. Those few days at hospital with Baba weren't pleasant memory to remember. He was prescribed more than a dozen medications to take. We bought medical equipment and home care supplies for stroke patients so that Baba could do the rehab at home, we also had a registered nurse on call, and so on. He was glad to be home, and it's wonderful to have him home again.
We knew our dad was really sick, but we never stopped praying for a miracle. Like Mama, I tried to remain optimistic and continued praying that Allah would grant him a physical healing. However, we were all scared as Baba grew weak, and it crushed me to see him so ill. I felt horrible when I left him and he was wide awake, but just looking at the ceiling. We sat by his bedside day and night because we just never know when the last time we got to talk to our loved one would be. Surah Yaseen, Ra'd and Ad-Dukhan were being recited all day long to comfort him.
01.30 AM Sunday morning, it was exactly two weeks after the stroke. I woke up and got to relieve Mama so she could get some rest while I took my night shift to watch over Baba. It was time to check his blood pressure and bood sugar level; all were in normal range. He seemed very restless and agitated. 02.00 AM.. His breathing deepened and sped up, it became so quick and irregular. His hands and feet got so cold, while his lips, finger and toe nails started turning pale. He stared straight ahead blankly and didn't respond to my questions. Ya Allah, I knew it was coming, but was it even real? I tried not to panic; I woke my mom up and she quickly contacted all her children. I looked up at her face, tears began seeping down her cheek.. I didn't know what to do, I was confused. The only thing I could do was keep Baba's face and lips moist with water and honey to make him feel better, and pray that Allah would ease the pain. My siblings came and sat right beside Baba. We were hovering over him. Then my brother recited shahada in his ear. Allah is the Greatest, Baba moved his paralyzed hand for the first and last time.... and laid it himself on his chest. My brother then put the right hand on top of it. Baba breathed his last breath. He closed his eyes. There was no heart beat. No more rise of his chest. I couldn't help but feel like my life was falling apart. Sad, angry, all in one breathe. We called a doctor to confirm it and ECG strip showed no ryhthm. Only straight line. He then removed the NG tube. Baba was no longer there.
So calm, peaceful, and beautiful. Baba..
It was even harder to believe that Ghusl (purification bath) became the last bath we gave him. Before they covered his face with Kafan, we used our last chance to tell him how thankful we are to have him in our lives. He looked angelic and handsome as always. We kissed him goodbye. That was our final farewell. Baba, please forgive me..
Our Baba was a fighter and always had a strong will to live. He always maintained high spirits and positive attitude despite his circumtances. Never once did he give in during that long illness, but this time he decided to stop fighting the disease. He fought an amazing fight and we know he is now pain free.
So calm, peaceful, and beautiful. Baba..
It was even harder to believe that Ghusl (purification bath) became the last bath we gave him. Before they covered his face with Kafan, we used our last chance to tell him how thankful we are to have him in our lives. He looked angelic and handsome as always. We kissed him goodbye. That was our final farewell. Baba, please forgive me..
***
Our Baba was a fighter and always had a strong will to live. He always maintained high spirits and positive attitude despite his circumtances. Never once did he give in during that long illness, but this time he decided to stop fighting the disease. He fought an amazing fight and we know he is now pain free.
Before Baba got sick, I had never really thought of myself (and mom) as a caregiver. I was in my mid-teens when he started showing signs of diabetes. Life has been difficult for the past few years and it was all not easy. Needless to say, this was extremely physically and emotionally draining. Everyday could be the hardest part. We spent so much time taking care of him in those days, that we often forget to take care of ourselves. I treasured every second I had spent with him. I never thought it was wasted time, I was glad to do this and felt rewarded by it. Mama as primary caregiver took very good care of him until he took his last breath. She never left him alone for even a second. I am glad Baba is finally at peace and I am eternally grateful I was able to be with him as he left this earth even though it's hard for me to accept that he is not longer with us. Now it is just two of us—Mama and me—in the house all day every day. My caregiver journey also has come to an end. I realized I had already learned so much from this entire journey. Those few years taught me so many valuable life lessons although it has been filled with immense sadness. Baba also taught me that even in the worst of times and during the hardest days we can find things to be grateful for. I want to thank him for making me a stronger and a better person than I was. He was a hard working and funny man. A man whose Adhan has always been my favorite sound since Day 1. The one whose hand I kissed after every Friday prayer. The only one who hated me wearing skinny jeans. Even though we grew up with a dad who didn't know how to express love to his children, we know that he loved us unconditionally and I had always been 'little one' to him. I'm very proud of him for everything he had done for me and our family. I know he is with me in spirit, I carry him with me in memories and I keep him in my prayers.
On this birthday, I am so grateful to Allah in every breath I take and in every moments of my life. I can't thank enough to Allah for giving me the best parents in the world. May Allah grant me and my family good health, righteous long life, happiness, imaan and taqwa at every step of life. Allah, please keep me firm on the right path. آمين
Actually, I made this post to let others who experience a similar journey to me know that they are not alone. Absolutely! It is depressing, lonely, tiring and exhausting. But you are strong. Be grateful you can take care of your loved one. When your journey is complete, you will have no regrets for what you have accomplished. Don't listen to others who try to tear you down. People that have never done it just don't understand that it's not only physically hard, but very much mentally. Please, take care of yourself and eat healthy foods. For those who still have their parents, be lucky they are still around and cherish every moment you have with them.
Allah says (what means): "And We settle in the wombs whom We will for a specified term, then We bring you out as a child, and then you reach your maturity. 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 a Jannah.
ﺍَﻟﻠَّﻬُﻢَّ ﺍﻏْﻔِﺮْ ﻟَﻪُ ﻭَﺍﺭْﺣَﻤْﻪُ ﻭَﻋَﺎﻓِﻪِ ﻭَﺍﻋْﻒُ ﻋَﻨْﻪُ
I miss you, Baba..
