Mother’s day 9th May
The World celebrates Mother’s Day on 9th May each year, with renewed enthusiasm, grandeur and gratitude. Our Social media networks, the commercial ads and every other platform get flooded with portraits of a ‘Mother’ and enlists her various attributes and virtues of unconditional love, sacrifice, patience, heroic, suffering and many more… Yet, we often forget that ‘A Mother’ is also a human being just as you and me, and is also equally filled with complex emotions and flaws, just like the rest of us. It is a well-established fact that mothers all over the world manage everything quietly, suffer silently, and is unbelievably courageous for her children, and for others around her.
Compassion being one of palliative care’s core values, we realize the pivotal role a mother has in each of our lives and how every palliative care professional also frequently adorns the hat of a mother to a patient.
We celebrate mothers’ as we present to you below, below, short stories of how mothers display resilience, astounding courage and selfless love as they continue to care for their children who are suffering from chronic and incurable illnesses.
The silent Hero nurturing little Aadhi
Shared by Dr. Biji MS, Asst. Professor, Department of Palliative Medicine, Malabar Cancer Center, Kerala.
Few days ago, a young woman in her early twenties walked into our department holding onto a prescription for morphine. Our nurse greeted her, checked her prescription and suggested that she bring the patient to the hospital for a consultation after which she would be given the necessary medication.
The nurse then told me “Madam, the prescription is for her child who is only a year old and is reportedly very weak. I am not sure if he would be able manage morphine and its recommended dosage. I think it is better you meet them”.
The nurse led the same young woman into my room, as the child slept peacefully on his mother’s shoulder. The doctor in me began visually assessing the child. As she was settling down, I noticed that the child was very weak, had a Ryles tubes inserted and was in fact only a baby. I felt that he must have only been around 6 months of age.
Once settled, the mother heaved a big sigh of relief and said, “I thought you asked to meet me and my baby to clean his mouth. That is the reason my father sent me in to meet you as he cannot tolerate seeing my son cry”.
As I began to understand the child’s medical history, I learnt that he had already undergone 20 fractions of radiation and had to endure another 8 fractions. This procedure had resulted in him developing some soreness in the mouth, due to which the radiation therapy was stopped. The mother went on to add that the doctors were waiting for him to get better and to gain a little weight before resuming treatment.
I was short of words for her.
I then gave her the Morphine as prescribed and provided proper instructions to administer it. She smiled and rose to leave along with her son. I walked her out of my room, shut the door and sat idle for a bit before I was ready to meet my next patient.
I still remember not knowing what was happening to me. I felt upset and experienced a myriad of emotions – anger, sadness, frustration, fear… all at the same time. I felt very weak, probably because I pictured myself in her place. The image of little Aadhi (named changed) and his mother, both seated in front of me kept flashing across my mind that entire day. I also had disturbed sleep that night, as I kept thinking about sweet little Aadhi and his young mother.
Two days later, Aadhi was admitted into our ICU due to a low white blood cell count which was a threat to his already low level of immunity. During my rounds the next morning, I noticed that Aadhi and every other patient in the ICU was fast sleep. However, Aadhi’s mother remained awake; day and night. Aadhi’s mother told me that Aadhi was unwell the previous night and was therefore crying throughout the night. She also told me that none of the other patients in the ICU were therefore able to sleep that night due to his crying.
As little Aadhi was fast asleep, I was able to spend some time with his mother, without any distractions. She said that it all began 2 months ago when little Aadhi was unable to sleep at night due to a nasal block which led him to breathe through his mouth. On examining him she noticed a small growth in her son’s left nostril. Little Aadhi was immediately taken to Calicut Medical College. After a lot of investigations and a biopsy, he was diagnosed to have Rhabdomyosarcoma of left maxillary sinus. He was then promptly referred to our hospital. I learnt that little Aadhi had undergone several Chemotherapies without experiencing much problems. However, he was unable to withstand the radiotherapy (RT) after 20 fractions, after which the RT had to be withheld. She repeatedly kept enquiring with me if her son would be able to continue his RT. I reassured her that once his Mucositis was healed, his doctors would resume his radiotherapy and that Aadhi would proceed to complete his treatment.
I noticed that Aadhi was always accompanied by his mother and grandfather. So I asked her about Aadhi’s father. Aadhi’s mother immediately teared up as she told me that he was in the Gulf and was unable to visit them due to the Corona crisis. She mentioned that he had left for the Gulf when Aadhi was only 10 days old. I enquired if Aadhi knew his dad, to which she said that they do connect regularly over video calls. Having access to such technology is such a blessing in difficult times. The young mother then went on to share that her support was her father-in-law who was there with her in the hospital. I learnt that her mother-in-law was unable to accompany her as she was handicapped post her accident a few years ago, and that her only sister-in-law was now married and unable to accompany or stay with her in the hospital as she was herself undergoing infertility treatment. She went on to conclude that though her family was extremely supportive, none of them wanted to interact with a doctor due to the fear of receiving any bad news.
After listening to her, I told her “So you are the strong person in the family?” She instantly shared that “My mother always told me that circumstances would make one bold and that God would never leave me alone. You see, Aadhi is the only grandchild for both our families… and he was born after 2 years of our marriage.. and with a lot of prayers”.
Personally, for me, seeing a young 23 year old mother, single handedly managing an infant suffering from acute illness, without the physical support of her husband is a very disturbing sight. This is the age when most of us would probably be enjoying college life, or be stepping into a new phase of our life: the beginning of a happy family life.
Though Adhi’s mother had the support of several people, yet, she had not slept for weeks together, because little Aadhi did not find any other hand or shoulder to be as cozy or comfortable as his own mother’s. Even though his mother always wore a smile on her face, I could see that she was suffering in silence. Crestfallen, she finally shared “The fact that I am unable to breastfeed my son, makes me feel weaker than he is. I am unable to communicate or share this pain with anyone. Though there are so many people for Aadhi, I still feel terribly lonely and helpless”.
These words by little Aadhi’s mother keep ringing in my ears till date. I strongly believe that I can connect to this and understand her feelings as I am a mother more, than I am a doctor.
Let us just be there, for the Mothers
Author: Dr. Spandana Rayala, Pediatric Palliative Care Consultant, Sunflower Program, Hyderabad.
Pain Relief and Palliative Care Society.
When we are successful or famous, we thank God and our mothers.
It is absolutely essential for someone to illuminate the significance of these beautiful creatures, the ‘Mothers’. It also becomes important to elucidate the things that they have done silently and for the things they continue to do so by expending every ounce of their energy towards ensuring that their child is alive, comfortable and enjoying the best quality of life for as long as possible.
Good fathers are amazing. More often than not, global norms call for the mother to be the primary care giver and the one who caters to the ailing child’s every need. This, is in addition to her caring for the rest of the brood; the other kids, the husband, the in-laws and the pets at home. She is expected to not feel tired, impatient, depressed, lost and at times not even experience emotions that her child is unwell; the reason being “If she is depressed, she is going to make her sick child more sad… and that is why she has to be strong”. This message will be re-enforced by everyone, at every given opportunity along with suggestions of “Smile… Move… Be productive… Think positive… Don’t cry…. Give hope…”
So, who cares for the carer?
I make it sound as if all mothers are amazing and all fathers are bad. That of course, is not true at all. There are instances where a mother has abandoned a sick child and the father has not done so (despite it being a GIRL!!!), and has continued to provide gentle care to the sick child, who was adopted at the insistence of the mother. Good fathers are amazing.
This story is about those women, who no one talks about. This piece of writing is to showcase the courage that these women display as they encounter and battle their own worries, fears, depressions, while being completely aware that their child is going to die soon. It is about how they fight tooth and nail to provide their child with the best care that they are capable of providing.
Shruthi (name changed), was a peadiatric patient of mine, and was the sweetest little girl, being cared for by her single mother. I learnt that when her parents divorced, the father chose to have custody of the son, while the mother got the girl. Shruthi was therefore the apple of her mother’s eye. Shruthi was diagnosed with cancer just before the COVID pandemic began. Her mother worked hard to ensure that the financial demands were met; and at times even borrowed or sold her possessions to ensure that they reached the hospital and were able to continue Shruthi’s treatment. Things were going ok until Shruthi relapsed, eight months into her treatment.
Shruthi’s mother was determined to move heavens and earth to ensure that Shruthi would continue to have access to treatment and recover, as Shruthi was the only family she had. Shruthi, though aged only 9, had the wisdom of a 90 year old. Eight months of being in and out of hospitals, watching friends die and listening to the worries of new patients and their parents, made Shruthi comprehend exactly what was happening. She told her mother, “Please don’t waste time. Let us go home.” Her mother was however unrelenting and convinced her daughter to begin treatment again. Shruthi passed away shortly.
This is where I began contemplating the several questions that popped into my mind.
When Shruthi’s mother had so little money, why did she spend it all on seemingly inconsequential luxuries such as buying Shruthi a pretty dress or a new art set?
Why did she spend a substantial amount of the borrowed money in giving Shruthi nutritious (read costly dry fruits and such) food?
Was it easier or difficult to actually stop treatment?
It would have certainly been easy on the pockets to have stopped treatment. Yet, why did Shruthi’s mother choose the path that was the most strenuous?
Now, with her only daughter gone and financial loans piled up, she is forced to work hard just to stay afloat.However, I am quite certain that Shruthi’s mother does not think so and wouldn’t mind so. As if to confirm my assumptions, during one of our bereavement calls, she made it clear “I know I tried my best. I did everything humanly possible.”
Did Shruthi’s tiny hints of love to live manifest in her interest in crafts and beauty, which was construed by her mother as Shruthi’s desire to live and the reason for her motivation to work so hard?
Over time, I also learnt that when Shruthi’s mother reached out to Shruthi’s father, and that he had said that he had nothing to do with Shruthi, and that she was her mother’s problem. As a way of rubbing salt into the wound, I believe he ended the conversation by saying “I don’t know what you did, that she got cancer?”.. Was this why Shruthi’s mother never considered stopping?
In the midst of all this, I once asked Shurthi’s mother if she missed her son. Firstly, she gave me a surprised look as to how I could even contemplate asking her such a question. Secondly, she was very vocal in articulating how much she missed her son and how the thread of connect is forever broken and erased from their lives. She went on to share “Of course ma’am.. I miss him.. He might have forgotten me in two years… But I think of him everyday.. even in this madness. I think of him even if he hates me; despite being aware that his thoughts towards me are being poisoned”.
Mothers of children having palliative care needs are warriors. They personify hope not just for themselves but for everyone around them including their entire family. Their initial hope revolves around wishing that the child is going to be cured. Then, they adapt to saying and believing “Let the treatment prolong their life and let me have them for as long as I can”. As time progresses further, they begin to hope that the last few weeks and days are as comfortable and pain-free as possible. While being in the thick of all this, (as if this is not enough) they are expected to keep the rest of the family intact, ensure that the other children flourish and perform well in their schools, cook, undertake every other chore there is to do, help financially by selling their possessions, maintain cordial relations with the extended family, etc. etc. The list goes on!
Mothers are unfortunately, not allowed to care about anything else. Their day job definitely does not take precedence. They are not expected to have any addictions. They certainly can’t say “things were not so or that things could have been different, if not for this child”. If she even conceived such a thought, she would immediately be questioned and shamed of “How could you?” She is THE mother. There cannot be excuses. There cannot be any slips.
So, let each Mother’s Day be a reminder to us, to humanize our mothers and have realistic expectations. Let us listen to them. ACTUALLY listen to them! Let us recognize that it is okay for them to falter, stumble or even fall. Let them vent, without being subject to judgment. Let us just be there, for them.