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…