In December 2019, my father was diagnosed with Multiple Myeloma, a type of bone marrow cancer. He seemed all fine before the diagnosis except I noticed his loss of appetite and swelling of gums.
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 Myeloma 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.
As a doctor, I always have the habit of connecting the dots. I remembered in the year 2017 he had a similar episode. My mind rushed to the thought that if this could be the same
When he got discharged from the hospital in 2017,( this discharge You are referring to the 2017 am I right ) the doctors said, we are lucky, he would have gone for renal failure if treatment were delayed. It was a miracle and he is in a safe place now.
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, couldn’t 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 father’s 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 dad’s 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. It’s 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 couldn’t 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. Swelling 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 couldn’t 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. I had to make sure that I was prepared with a solution in the lockdown if he has to go through any pain. I was preparing myself for every scenario so that I wouldn’t end up in an anxious state where I could not handle my father and myself simultaneously.
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 mother’s presence to support him and keep cheering him up. It was an extraordinary journey for both of us.
For passing the time, dad would help me with cutting vegetables for the meals and maintaining the garden. He used to get angry because he couldn’t go out or to the beach for a change. Lockdown was irritating him. He wanted to meet his son and wife but he was not able to because of the nation-wise lockdown.
The journey was going fine, but his illness was growing. I had to switch many doctors according to the situation. Then finally, I went to Apollo Cancer Hospital. The oncologist there was very friendly, and they even opened options of palliative care. The doctors could feel that I was burnt out. I did a lot of research to see if there was a palliative care unit near my locality and located one which was about 5 mins drive from my house. I made enquiries if they could take care of him in these covid times.
I remember before he left for the palliative care centre , his last words to me were, “I don’t know what is happening around me anymore, but you’ve 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.
My son and I used to visit him while he was in palliative care. I saw a lot of difference in his health by June end. He started having solid food, which he had stopped by the end of may. I realized he wanted some change in the atmosphere. However, this was short lived, June 27th to July 15th. Gradually his intake reduced and by 18th July he stopped eating, and I started getting regular calls from the palliative care about his mood swings.
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 couldn’t 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.
Finally, by 8.30 pm the sister came in and told me it was his time to sleep. He needed rest. He is just pushing away because I was there. I did not want to say no to the nurse, but I saw him leaving and felt sad.
Generally, the nurses have observed that my dad used to toss and turn several times before he went into a deep sleep. And this was not happening. The tossing and turning began to reduce from 10 pm. I went to bed by 10:30 PM, and at 10:45 PM, I was woken up. I was asked to revive him, by speaking to him as he had stopped responding. As I entered the room, I saw the oxygen mask covering his nose and mouth, but it had no moisture on the inner surface. His eyes were fixed and had an upward gaze. I knew that very moment he passed away.
This was the day I had anticipated for a long time, and I did not have the courage to face it alone with no family members by my side. And it was for the same reason I admitted him to palliative care. I had 5 nurses , housekeeping staff, the security around me and they became my family at that moment.
Life as a Primary Caregiver:
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 someone’s 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, that’s 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 don’t 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 patient’s emotions, needs, and mood swings.
Line of Treatment after Diagnosis:
As cancer comes, people often get treated by chemotherapy. He was given monthly injections of IV for straight 1 hour. He had his weekly medicines in the tablet form. The doctors had prescribed him to take one steroid every once a week.
The doctors gave him radiotherapy/radiation therapy 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 wouldn’t 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.
I am much grounded in my beliefs, ambition, and expectations. So I would like to add that there is no treatment per se, especially in multiple myeloma. I believe that this illness has no cure for people who are older.
Lifestyle changes after:
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 don’t think I could’ve done anything beyond that. And this was the perfect closure or answer to my questions.
My father’s dream:
My father’s only dream was to visit the Holy land in Israel. He wanted to walk on the roads where Jesus had walked in. This dream of him became an obsession for me. I was like, I have to complete this dream of his and make him so happy.
Sometimes I noticed my dad with severe mood swings. He also had a loss of appetite. I believe the medications and diagnosis can cause side effects, but it is the person’s 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.
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 person’s well-being.