Hearing someone close to you being terminally ill is not an easy thing to digest. Even if it is your older parent who we know, on average, are closer to mortality than our younger selves. But especially because they are the ones who have been, in most cases, the stronger support pillars in our lives, it is harder to digest the fact that those pillars are now crumbling.
For all my life I had seen my mother (Aai) as a super energetic person. Whether it was cooking or any other work, the speed and efficiency of her work was always on high fuel. At one time she did home catering and while it was lot of demanding work she never got tired of it, doing it not because of any material need but just to keep herself engaged and busy in doing what she absolutely loved.
Since 2011 Aai had been staying with me here in US. In late 2022 she was diagnosed with CMML (Chronic Myelomonocytic Leukemia) which is a rare version of leukemia. The diagnosis led to series of treatment plans over 18-20 months which included medications, infusion chemo, radiation chemo, oral chemo medications but most importantly monthly blood transfusions due to significant drop in her hemoglobin levels. Each treatment caused severe weakness, fatigue, nausea, discomfort due to increased spleen size and the transfusions required frequent ER admits which are tiresome. One of the hardest parts was blood draws, which seemed countless. As the condition progressed causing her to lose weight, loss of muscles and the skin becoming flabby, it became harder to find proper veins for blood draws, sometimes requiring multiple pokes in various places and bruising.
Educating yourself as a patient or caregiver about the condition helps understand symptoms, treatment options with its pros and cons, progression of the disease and in general what to expect. A private FB CMML group with many patients and/or caregivers was very helpful in learning, sharing and openly talking about it all.
As a primary caregiver you live though your own version of the disease/ condition. In our case it was more so, since due to language and transportation reason, I had to be present for every Dr/hospital appt and answer any questions or provide info (Ninad, my nephew took her a few times when I was out of town). As a caregiver you don't just see what your loved one must go through all these treatments but are constantly watching them deteriorate physically and mentally while you are mostly helpless in making it all go away. There is also the juggling with other things in your own life - children, work, housework, social engagements. In fact, all aspects of your life are impacted. And while doing this you have to keep a strong demeanor and will to ensure you are doing the right things, whether it is talking with the doctors, nurses or supporting rest of your family deal with it.
While relatives and friends did offer help it was difficult to utilize it, especially for medical visits, as I knew the medical history, medications, symptoms etc. of what was going on while speaking with various medical staff. Hence it wasn't easy to substitute anyone. Thankfully I was able to take couple of vacation breaks with help from my nephew, niece & daughter who took care of Aai when I was away, but it always required careful planning.
While all this is going on it's easy to go through a series of emotions such as frustration, anger, helplessness, burden, grief, and guilt. There were times when I got frustrated or angry with Aai due to some conflicting demands during my work meetings or something not up to her expectation only to feel guilty about it later. There's also the fact that people who are fiercely independent in life are the worst patients when it comes to sickness related dependency.
As things got worse I also wished that things end sooner than later so that the suffering is not prolonged. I informed and advised her that the choice for continual treatment is hers to make and she can decide to opt out at any time. Neither the doctors, I nor anyone else can make the decision for her. Explained her about palliative care and hospice option. These are not easy things to discuss and while doing so there was always a feeling of guilt in my mind, thinking whether I was telling this for her own best interest (in this case less trauma and suffering) or a relief for myself from the work and stress of caregiving. This is a terrible dilemma for caregivers as it puts one in a confusing state of mind, making it harder to express your feelings to anyone.
During the last visit with the Oncologist on Apr 15th we made decision to stop any active cancer treatment and switch for home hospice care. When the Dr said 'you did an excellent job of taking care of her. She wouldn't have come this far without your support' it was sort of a relief for me. Based on history and frequency of blood transfusions the Dr had surmised she may survive 6-8 weeks. However, she expired on Apr 24, just about a week from making the hospice choice.
While I have a very rational view on subjects of mortality, quality of life, death with dignity etc. Aai was always heavily invested in being the Matriarch of our family. I had long conversations with her about detachments, letting go of things, stop worrying about any of us, but I know it wasn't easy for her. Ultimately though, based on how quickly everything happened, I could only surmise that our decision did not matter much. The decision was already made by fate, destiny or whatever you may call it. The only solace to mind is that she got enough time to bid farewell to everyone in her birthplace in Kerala, in Pune and here in Detroit and in her last moments she was at home surrounded by her loved ones.
Finally, my only word of advice to any caregivers is that do what you can and need to do for your loved ones. Each situation may be different, you may be close or far away, alone or with lot of help. Just do your best. At the same time take time for yourself, don’t hesitate to seek out for help, share what you are going through with relatives, friends and at workplace. And understand that going through a roller coaster of emotions is perfectly normal. Just take it one day at a time.
Suresh
5/3/2024
