تشخيص:

In December 2019, my father was diagnosed with گهڻ ميڪيلما, a type of bone marrow cancer. He seemed all fine before the diagnosis except I noticed his loss of appetite and swelling of gums. 

سفر

I was the caregiver for my 79-year-old father. I am a dentist and neuroscientist by profession. Because of my professional background, I was able to understand the disease. My father was diagnosed with Multiple ميلووما in December 2019. It was a type of bone marrow cancer. He seemed all fine before the diagnosis, but I did notice him losing his appetite. He was a boxer, so I have always seen him with excellent arms. I used to ask him whether he was feeling tired or what, and he always replied to me, all good. As a 79-year-old, he was walking, eating good food, and doing things on his own. 

هڪ ڊاڪٽر جي حيثيت سان، مون کي هميشه نقطن کي ڳنڍڻ جي عادت آهي. مون کي ياد آهي سال 2017 ۾ هن جو هڪ اهڙو واقعو هو. منهنجي ذهن ۾ اهو خيال اچي ويو ته ڇا ائين ئي ٿي سگهي ٿو 

2017ع ۾ جڏهن کيس اسپتال مان ڊسچارج ڪيو ويو ته (هي ڊسچارج توهان 2017ع جو چئي رهيا آهيو آءٌ صحيح ڪري رهيو آهيان) ڊاڪٽرن چيو ته اسان خوش قسمت آهيون، جيڪڏهن علاج ۾ دير ٿئي ها ته رينل خراب ٿي وڃي ها. اھو ھڪڙو معجزو ھو ۽ ھو ھاڻي محفوظ جاءِ تي آھي. 

We consulted a nephrologist, a kidney specialist. On 27th November, we came to the hospital, and by 3rd December 2019, we got all the tests done. The doctor asked for a bone marrow test and gave us the reference for that. Because of the connection, things went smoothly and faster. Within two days of the test, we had the diagnosis as Multiple Myeloma. This was a shock for us at first. My brother used to live in The States at that time though my mother was in Chennai. I knew my mother, being elderly, couldnt take care of him alone or even with the help of servants. And I felt the best person who could take care of him would be me. So I brought him to my house. I felt like handling my fathers responsibility as I thought I would be enough for him. 

I told my brother, and we quickly started looking for the best options for dad. It is very common to always give the best facility for our loved ones. I talked to my dads cousin who was a retired anesthetist. She helped me through Whatsapp to locate an oncologist. By December 27, 2019, we found the Oncologist from Madurai who was a consultant in Chennai. I felt it was divine intervention. I wasted no time. We also celebrated my dad's birthday the same day we had to meet our oncologist as well.

My dad sort of had memory issues. I always gave him his space. Its like taking care of a child and letting him pick the candy for himself. The 1st thing he told me, Thank you for taking care of me and taking me under your wings. Your mother could not have done all this by herself. When the doctor saw my dad as a patient, he couldnt believe his eyes that he was suffering from an illness. The doctor then checked his spine, and my dad said he is not facing any pain. As a dentist, I found swelling in his gums which was weird. سڙڻ in the gums is one of the main symptoms of this cancer. The doctor challenged my father that he wants to see him walking on the next visit. My father used to love challenges, and he did it. By mid -Dec 2019, my brother arrived and he went back by Jan 2020 2nd week. My dad was so happy that he could be with the whole family again. 

I did not want him to feel like a patient or suffer due to this illness. I wanted him to look forward to the time. My mother went to Kodaikanal to get the house cleaned , and just then the lockdown happened. So she couldnt come back. I was again all alone taking care of my father. I had to take care of his mood swings, food, his regular chores, or anything. Multiple myeloma is one of the most painful cancers. مون کي پڪ ڪرڻي هئي ته جيڪڏهن هن کي ڪنهن تڪليف مان گذرڻو آهي ته مان لاڪ ڊائون ۾ حل سان تيار آهيان. مان پاڻ کي هر منظر لاءِ تيار ڪري رهيو هوس ته جيئن مان اهڙي پريشانيءَ واري حالت ۾ نه وڃان، جتي مان پنهنجي پيءُ ۽ پاڻ کي هڪ ئي وقت سنڀالي نه سگھان.

Every day, the three generations (Dad, myself and my son) sat together, had all three meals, joked about things, watched tv, and played games. He would try to say something from his past, some story, some experience, talk about his mother, etc. He had an excellent memory of his past, but he was unable to recall his present. To my brother and my mother, he confessed that I, as a daughter, takes care of him as his mother used to do. Emotionally, I was drained as I wanted my brother and my mothers presence to support him and keep cheering him up. It was an extraordinary journey for both of us.

وقت گذرڻ لاءِ، بابا مون کي ماني لاءِ ڀاڄيون ڪٽڻ ۽ باغ جي سار سنڀال ۾ مدد ڪندو هو. هو ناراض ٿي ويندو هو ڇو ته هو ٻاهر يا سمنڊ جي ڪناري تي تبديلي لاءِ نه ٿو وڃي سگهي. لاڪ ڊائون کيس بيزار ڪري رهيو هو. هن پنهنجي پٽ ۽ زال سان ملڻ چاهيو پر هو ملڪ جي لاڪ ڊائون سبب نه ملي سگهيو.

سفر ٺيڪ ٿي رهيو هو، پر هن جي بيماري وڌي رهي هئي. مون کي صورتحال جي مطابق ڪيترن ئي ڊاڪٽرن کي تبديل ڪرڻو پيو. پوءِ آخرڪار، مان اپولو ڪينسر اسپتال ويو. اتي جي آنڪولوجسٽ تمام دوستانه هئي، ۽ انهن کي فالج جي سنڀال جا اختيار به کوليا ويا. ڊاڪٽرن کي محسوس ٿي سگھي ٿو ته مان سڙي چڪو آهيان. مون ڪافي تحقيق ڪئي ته ڏسو ته ڇا منهنجي علائقي جي ويجهو هڪ فالج جي سنڀال جو يونٽ موجود آهي ۽ هڪ واقع آهي جيڪو منهنجي گهر کان اٽڪل 5 منٽن جي فاصلي تي هو. مون انڪوائري ڪئي ته ڇا اهي هن ڪووڊ جي وقتن ۾ هن جو خيال رکندا. 

I remember before he left for the palliative care centre , his last words to me were, I dont know what is happening around me anymore, but youve taken good care of me. I know you are pretty tired, and that is why you are sending me somewhere where I will be taken care of. I will just do what you want me to do, and I will ask no questions. 

منهنجو پٽ ۽ مان هن وٽ ويندا هئاسين جڏهن هو فالج جي سنڀال ۾ هو. مون جون جي آخر تائين هن جي صحت ۾ گهڻو فرق ڏٺو. هن کي ٿڌو کاڌو کائڻ شروع ڪيو، جيڪو هن مئي جي آخر تائين روڪي ڇڏيو هو. مون محسوس ڪيو ته هو ماحول ۾ ڪجهه تبديلي چاهي ٿو. بهرحال، اهو مختصر رهندو هو، 27 جون کان 15 جولاء تائين. آهستي آهستي هن جو پيٽ گهٽجڻ لڳو ۽ 18 جولاءِ تي هن کائڻ بند ڪري ڇڏيو ۽ مون کي هن جي مزاج جي خرابيءَ بابت فالج جي سنڀال وارن کان باقاعدي فون اچڻ شروع ٿي ويا. 

On the 24th of July, I asked the doctor if I could stay with my dad that night. The doctor granted me permission. I called my brother on a video call and my mother on an audio call. He asked me to sit by his side and asked me to gently rub his chest and later stroke his head. I couldnt take him to the holy land, the only wish he had in his life, but I had a book from the church that contained small stories or lessons. I read that to him. He was extremely happy, for 30 mins he was in a blissful state. He insisted on using the restroom. He tried to use the restroom, and we supported him. He finished his urinal and came out. After then he collapsed.We took him to the bed; the nurse checked his vitals and informed me he was fine. However, I was not confident and comfortable. The nurses even assured me that 24th July was not his day. 

آخرڪار، 8.30 وڳي ڀيڻ اندر آئي ۽ مون کي ٻڌايو ته اهو سندس سمهڻ جو وقت آهي. هن کي آرام جي ضرورت هئي. هو صرف پري ڪري رهيو آهي ڇاڪاڻ ته مان اتي هوس. مان نرس کي نه چوڻ نه ٿي چاهيو، پر مون هن کي ويندي ڏٺو ۽ اداس محسوس ڪيو.  

عام طور تي، نرسن ڏٺو آهي ته منهنجو پيءُ اوندهه ننڊ ۾ وڃڻ کان اڳ ڪيترائي ڀيرا ٽاس ۽ ڦرندو هو. ۽ اهو نه ٿي رهيو هو. رات 10 وڳي کان ٽاسنگ ۽ ٽرننگ گهٽجڻ شروع ٿي ويا. مان 10:30 PM تي بستري تي ويس، ۽ 10:45 PM تي، مون کي جاڳايو ويو. مون کي چيو ويو ته هن کي جيئرو ڪيو، هن سان ڳالهائڻ سان جيئن هن جواب ڏيڻ بند ڪيو هو. جيئن ئي مان ڪمري ۾ داخل ٿيس، مون ڏٺو ته آڪسيجن ماسڪ هن جي نڪ ۽ وات کي ڍڪي رهيو هو، پر ان جي اندرئين سطح تي نمي نه هئي. هن جون اکيون اٽڪيل هيون ۽ مٿاهون نظرون هيون. مون کي خبر پئي ته ان وقت هو گذاري ويو. 

هي اهو ڏينهن هو جنهن جو مون کي گهڻي وقت کان انتظار هو، ۽ مون ۾ اها همت نه هئي ته اُن کي اڪيلو منهن ڪري سگهان، جنهن ۾ منهنجي گهر واريءَ جو ڪو به فرد نه هو. ۽ اهو ئي سبب هو جو مون هن کي فالج جي سنڀال ۾ داخل ڪيو. مون وٽ 5 نرسون، هائوس ڪيپنگ اسٽاف، منهنجي چوڌاري سيڪيورٽي هئي ۽ اهي ان وقت منهنجو خاندان بڻجي ويون.  

هڪ پرائمري سنڀاليندڙ جي حيثيت ۾ زندگي:

I have been a primary caregiver of my father for almost nine months. I have learned various things in this journey. As a caregiver, One should know how to handle and take care of themselves before taking care of the patient. If only a caregiver is stress-free, they can handle someones mood or behavior. If one cannot deal with their own emotions, how can they take care of the patient who is continuously having mood swings. Every day you have to look forward despite the outcome. A caregiver must understand that this is not a battle; this is a journey. It is not a struggle; it is just life with some ups and downs. 

I was never in a panic or anxious mood. My dad used to observe me and say, thats why I am so comfortable with you taking care of me. I would get up early. I finish my meditation and yoga, have breakfast very early at around 7:30 AM. By eight or 8:30 AM, I used to wake my dad up. He then had his breakfast after bathing and all the morning chores. There were bad days where he did not felt like waking up from the bed, so I had to convince him to get up somehow and take the medicines. 

My life as a caregiver was a pleasant journey with my dad. We had an understanding between us. As a primary caregiver, I was his everything, from being a daughter to a doctor or a nurse. I do miss my dad, but I dont get haunted by the questions anymore. If one knows how to take care of themselves, caregiving is a very good journey. Anybody can do it with proper research and, if you know, how to handle the patients emotions, needs, and mood swings. 

تشخيص کان پوء علاج جو سلسلو:

جيئن ڪينسر اچي ٿو، ماڻهو اڪثر ڪري ڪيموٿراپي سان علاج ڪن ٿا. هن کي IV جي مهيني انجيڪشن ڏني وئي سڌي 1 ڪلاڪ لاءِ. هن جون هفتيوار دوائون ٽيبليٽ فارم ۾ هونديون هيون. ڊاڪٽرن هن کي هفتي ۾ هڪ ڀيرو هڪ اسٽيرائڊ وٺڻ جو مشورو ڏنو هو. 

The doctors gave him ريڊيراپيراپي/تابع جو علاج for 19 days. This happened between April and May 2020. He was barely able to walk and we had to travel for more than 10 Kms. As a doctor, if I were in that position, I wouldnt have allowed or suggested radiotherapy for a person of his age. When we switched and went to Apollo hospital, the doctors observed his reports and scans. After the screening, the doctor said that everything is perfect and under control. There is no need for any test or therapy to be done. They wanted to shift the patient to palliative care.

 مان پنهنجي عقيدي، عزائم ۽ اميدن تي تمام گهڻو بيٺو آهيان. تنهن ڪري مان شامل ڪرڻ چاهيان ٿو ته هتي ڪو به علاج ناهي، خاص طور تي هڪ کان وڌيڪ ميلوما ۾. مان سمجهان ٿو ته هن بيماريءَ جو علاج وڏي عمر وارن ماڻهن لاءِ ناهي.

زندگي جي انداز ۾ تبديلين کان پوء:

After my dad passed away, I was grieved in anger. My mother and brother were not there with me, and no one understood what I was going through or what I was trying to say. I did not found my closure for an extended period. I kept struggling and got haunted by questions like did I do my best, or was there anything else I could have done for him, etc. I joined a course in palliative care where they helped me to come out of this feeling. There I found my closure. I dont think I couldve done anything beyond that. And this was the perfect closure or answer to my questions. 

My fathers dream:

منهنجي پيءُ جو واحد خواب هو ته هو پاڪ سرزمين اسرائيل ۾ گهمڻ. هُن اُن رستن تي هلڻ ٿي چاهيو، جتان يسوع هليو هو، هن جو اهو خواب مون لاءِ جنون بڻجي ويو. مان چاهيان ٿو، مون کي هن جو اهو خواب پورو ڪرڻو آهي ۽ هن کي تمام گهڻو خوش ڪرڻو آهي. 

غلط اثرات:

Sometimes I noticed my dad with severe mood swings. He also had a اشتلي جو نقصان. I believe the medications and diagnosis can cause side effects, but it is the persons will that decides how to take all these side effects. My dad had a strong will. He kept looking forward to things in life regardless of what he was going through.

جدائي جو پيغام:

As a caregiver, you need to be sensitive about yourself first. It is always best to take care of yourself, mind your moods, get proper sleep, and eat properly. After doing all these things, then only one can address the other persons well-being.