19 October 2017

That unassuming, oft-forgotten other parent of mine…

Those smiles and better-than-normal state for my dad did not last long. I had gone to bed at around 12:30am. By 2:30, my dad’s ailment had taken a firm grip and gotten the upper hand. I woke up suddenly to loud yelling. Glanced at my Fitbit to check the time and rushed to my dad’s room.

Dad was in bed – clearly awake – and was yelling as hard as he could. The assistant lady was helplessly sitting beside him. And my mom was deep asleep next to my dad. My dad was trying to wake up mom with the one arm that is still functioning. But mom is so overcome by exhaustion – and as I have mentioned before, she is a patient herself – her body just could not take any more in spite of all that chaos that was happening a foot away from her.

I went by my dad’s side and started to calm him down. He was slurring all the time. Completely incoherent in his speech, there was absolutely no way to communicate with him – let alone apply reason or logic. You could sense that he was feeling very helpless and wanted my mom to be with him. As part of his brain damage – he calls my mom “mom” now!!! He does not remember her name. He just calls her “mom”. I will write about a defining moment in my life about my dad and his mom (my grandma) later.

I tried a lot of things – getting him to sit up, getting him to lie down, giving him water, just talking to him in soft voices…. He kept on going thru a phase of what seemed like a few moments of logical thinking (“Go to your bed! It is too late now!!”) followed by a few minutes of complete insanity (“Call mom! She has borrowed money!! I need to drink milk!! – and those were the words I could actually comprehend). In about 20 minutes he tired himself out and then went off to bed.

I went to mine to start writing my blog. He woke up in another 10 minutes and we went thru this cycle three times till he finally slept off at around 4am. My mom never woke up at all thru all this.

Sat in the balcony and made a few birthday calls to US. Checked the emails and realized one of my patients in hospice had “transitioned” this morning. When I went to check on him on Monday before leaving for India, I had met his son-in-law there – it was pretty evident he was not going to make it for too long.

Shut down my computer, overwhelmed with my thoughts of my dad, my hospice friend who is longer no more and my mom.

When I go to hospice, it is a volunteering thing. If I want not to deal with a situation or am frustrated by a patient, I can always walk out. Or go to another patient. I have a choice.

The caregivers in the hospice – they have less of a choice – but at some level this is their profession. They are trained for this and to some extent, they have chosen this as their calling. But still, my heart goes out to them watching them keeping their sanity amidst some of the gut-wrenching scenes. (How do you really deal with a situation when the patient helplessly looks at you and asks – “Can you speed this up?”. Yes, I have seen that happen with one of my patients)

The assistants we have here at our house – my heart goes out even more. They are not professionally trained at all. These are middle aged women who are doing this because they need a livelihood. I have found, so far, all of them extremely compassionate and incredibly patient. What they do not have in training, they make up in sincerity.

And then there is my mom. She is having to carry the biggest burden of the care giving. She has refused to sleep anywhere but next to my dad in spite of knowing that she is going to not get much rest. Dad is yelling always for her – without any rhyme or reason. She has not complained yet of her situation even once or has asked any of her kids for any more help than we are giving now.

Here is the tough reality – she was offered no choice. Life dealt her not the brain stroke itself but the biggest collateral damage it can cause.

Being a primary caregiver is much tougher than I will ever realize.

By the way, when I went back to dad’s room, mom was changing his diaper. To give them some privacy, I stepped out and came out to the balcony to enjoy the dawn break – something my dad and I often enjoyed together.

Went back a few minutes later and saw that the kitchen lights were on. Stepping in, I saw what was going on… My mom, instead of going back to sleep, was in the kitchen making tea for me!!!

Like I said, being a primary caregiver, is very very tough.
Being a mom? Much tougher, I suspect.

Being both? Beyond my level of comprehension…



Posted October 19, 2017 by Rajib Roy in category "Family in India", "Vacations

82 COMMENTS :

  1. By Mark E Meade on

    God bless you and your family my friend. I didn’t realize your dad had a stroke until I read your blog a couple of days ago. I know this is a very tough part of life. My thoughts and prayers are with you.

    Reply
  2. By Soumyadipta Basu on

    Rajib da: very well written. I guess Mom is always a Mom whether for her kids or even if her husband calls her by “that name” due to his illness

    Reply
  3. By Shreya Sengupta on

    I feel mothers are rockstars and honestly only they know how they handle so much yet stay so calm and composed majority of the times. You are lucky to have such awesome parents. 🙂 Speedy recovery to your father and more power to your mom. Big hug to her.

    Reply
  4. By Sri Ganesh on

    Rajib Roy I can fully understand the situation. My dad was paralyzed neck down and was completely dependent on mom refusing to take help of the assistance giver. Fortunately my mom was and is still in good health. But in the 4 year period she was physically drained. I pray for your dad to have lower levels of pain and recovery.

    Reply
  5. By Deepasmita Bose on

    Sometimes somethings are beyond our comprehension and control. All we can do is to hope for the best. My regards to your mom and dad. Take care Rajib da.

    Reply
  6. By Sankalp Saxena on

    Sending you positive vibes. Stay strong. It is very challenging to see our parents age. Your being there itself will lift their spirits immensely.

    Reply
  7. By Dale Green on

    This brings a lot of thoughts. My dad is going through his second treatment for prostrate cancer. I called him today to listen to him brush off the treatments like nothing was wrong. He’s always done this his entire life. He never breaks down and just has an honest conversation.

    Watching aging parents can be difficult. My prayers are with you my friend!!

    Reply
  8. By Sudhir Rao on

    I am going thru similar experiences for the past 3-4 years and can fully relate to your blog. My conclusion: Its a privilege to spend such days with your parents at this stage….

    Reply
  9. By Smita Kar on

    Hope she gets the strength to cope through this physical and emotional roller coaster. Reading your blog reminded me of my mom when she was a primary caregiver to my dad who was battling cancer, it was such a difficult time.

    Reply
  10. By Vishal Bamba on

    Selfless service is a rare virtue. I have seen my mother do the same for my Dad. She always did it with a smile, never once complained. It is their unconditional love that gives them the strength, which to us at times can look superhuman.

    Reply
  11. By Urmi Duttagupta on

    Bachhuda once again I am amazed by your compassion, observation, and writing style. Ami ekhono kaku, kakima ke khub clearly mone korte pari. Kaku loved gardening and used to call Soma as “Somu.” Ki bolbo ar. Tumi okhane achho – setai anek pawa onader. Not everyone can do what you are doing! Bhalo Thakar chesta koro.

    Reply
  12. By Siddhu Sridhar on

    I went through exact same phase with my dad and watching mom in the same situation….. i know how tough it is to take it. Prayers with you and you family to give strength during this difficult time Rajib.

    Reply
  13. By Joyoti Chaudhuri on

    Please accept my heartfelt respect for your sensitivity. I have witnessed the same at my home but couldn’t ever articulate it the way you did.

    Reply
    1. By Rajib Roy on

      Thank you Joyoti. If I can stay awake this evening, I will drop by your house? How is your mom and in laws doing? How is Debasish?

      Reply
  14. By Indu Godura on

    My prayers for your parents.Your mother is a typical example of Indian mother n wife.How she reminds me of my mother.God be with you all struggling through tough times…..

    Reply
  15. By Suzanne McBride on

    That “heart” I clicked was one of compassion.
    So many of my friends have unexpectedly served as primary care givers… to their spouses, parents and in one case, her own child. As I face the prospect of becoming a caregiver myself in the not too distant future, I find stories like the one you shared both enlightening and unnerving.
    Thank you for sharing this part of the journey.

    Reply
  16. By Rupak Ganguly on

    Thank you for sharing such personal stories. It is heartbreaking to hear what your dad is going through. Your mom on the other hand is a strength and inspiration for me. Being a mom is hard and most selfless thing. I have always respected women for that. All I have is best wishes and hope that he will feel better. Talk to you soon.

    Reply
  17. By Arindam Chatterjee on

    Rajib, my dad is in advanced stages of dementia and Ma is the primary caregiver. We have two professional nurses for him (12 hour shifts) and two maids for Ma (again 12 hour shifts). This does help although it is somewhat expensive.

    Reply
    1. By Rajib Roy on

      Thanks Arindam. We have three such help at home but as I mentioned, they are not exactly professionals (in Kalyani, the availability is not there) but still a big help.

      Reply
  18. By Biplab Dey on

    I pray to God to give strength to you and your family. Kakima too. Very tough reality. Hope everything gets better fast.

    Reply
  19. By Bill Hubbard on

    Heartfelt EVERY BEST WISH to you and all those close to you. Kiss his forehead and tell him you love him. He’ll understand

    Reply
  20. By Amrutha Renganathan on

    Thank you for sharing Rajib Roy I truly feel blessed to have met you. I will pray for your parents. For peace amidst it all. My mom is in India right now with her parents too. They are in a similar situation. I’m so sorry your parents are in pain- I can’t imagine all the emotions you must be experiencing right now. I’m happy you are with them though. I’m sure you light up your parents world.

    Reply
  21. By Vicky Ruffin Cupit on

    so sorry RR…as you know this is my 4th time as a primary caregiver for a family member… it never gets easier… but your mom must rest and breathe for herself… he needs her to stay around…bless you and your family in this difficult time…

    Reply
  22. By Sonjukta Halder on

    Please give your dear mom a tight hug from all of us here. It is so tough to be in that situation, but she is strong…I have seen my mom…. tears filled my eye reading this.

    Reply
  23. By Prosenjit Dutta on

    You articulated the situation so well, the heart wrenching condition of your dad, the unwavering sincerity and sacrifice of your mom, the love and caring of your father’s caregivers… The way you narrate the scene by your father’s bedside reminds me Dickens’ David Copperfield where David abstracts himself to be the least important character of all but in reality is pivotal to the narrative that Dickens intended. Very touched, Rajiv. You are such a worthy son to your parents! I am sure that’s what keeps them going through all the difficulties they face every day.

    Reply
  24. By Greg Hutmacher on

    Very close to home for me. I lost both of my parents within 10 months of each other. I watched my mother die of Alzheimer’s and was with my father at his home when he succumbed to the cancer he’d fought for seven years. I understand how tough it is and how hard it is on those who are the caregivers. My thoughts are with you.

    Reply
  25. By Sarani Ghosh on

    Rajib Roy – Rajib da .. I hope your dad gets better .. praying that god gives your mom the strength & patience to get through these tough times !

    Reply
  26. By Arthur Altman on

    Honor your Mother and your Father… Your actions model what that really means. Best wishes for a full and speedy ecovery for both your parents.

    Reply
  27. By Ashok Das on

    Rajib..painful memories of my dad in eighties were relived as I read your piece here , moms are priceless for what they do – out of selfless love throughout their lives .
    Our thoughts and prayers are with
    your parents .

    Reply
  28. By Georgie John on

    God bless you and your family dear Rajib. I can very well understand your situation and your loving mother’s, because at some point of time I too have gone through the same. Our sincere prayers are with you and your family.

    Reply

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