Thursday, September 7, 2017

When Life is a Bitch, What Else Can I Do But Laugh!..... Really??

That's right! "Try to laugh", that is. For life is a bitch. A real bitch! 

Specially for caregivers, for whom the alternatives of crying or running away or changing the situation, do not exist. Often, cries for help are not made, or when made, are not heard or understood.  Caregivers just have to learn that everyone believes their life is complicated and tough - taking on an additional responsibility or carving out time to help, is asking for a lot. 

Want to know what its like? Here's a quick tour of my bitchy-life's last 5 months.

April 2017: My father's major-domo, Tairas, goes on vacation for 3 weeks. I rearrange my life  and work schedules to be Anna's major-domo for that period. 10 days later, Tairas calls to tell me he is not returning. A 21-day extra-work schedule turns into a 7 week extra-work grueling schedule. The new major-domo, Alex, arrives May 23rd. Somewhere in the middle, I battle an infection that leads the doctor to ask me to have a punch biopsy. I wonder when I will get the time to do this.

29th May 2017: My father-in-law, Daddy, who is 92 years old, is diagnosed with Acute Myeloid Leukemia.

June 2017: We are told that Daddy has 3-6 months to live. Given his age and the progress of the disease, we decide that managing his symptoms and ensuring quality-of-life is more important. We have 2 hospital stays in a month - once via Emergency and once for a blood transfusion. Sanjiv, my husband, spends almost every waking moment caring for him. The tables are turned, as Anna is wheeled daily to meet my father-in-law.

July 2017: Daddy is visibly deteriorating. On 14th, I am conducting a program in Gurgaon. At 3 pm, Sanjiv calls to tell me that Daddy passed away. The next 10 days are a blur of arrangements, people visiting, etc. End of the month, my mother-in-law, who is 82 years old, spends 5 days in hospital with acute gastroenteritis.

Sanjiv lies in the same hospital room as his mother;
 separated by a few days

August 2017: We rush my mother-in-law to emergency twice. She spends over 10 days in hospital, 5 in MICU. Acute gastroenteritis again. And again, I spend the days at the hospital while Sanjiv spends the nights. Finally, she is back on 19th. On 21st Sanjiv starts a fever that sends him to Emergency on 28th with Dengue. Somewhere in the middle of all this, I manage to get my punch biopsy and it is clear.

September 2017: Sanjiv is released from hospital on 1st afternoon. That evening, my mother-in-law tells me she has bleeding piles. Off to the doctor I go again. By the time I am back home, I am literally teetering on my feet.

And thru all of this, Anna and his needs are the lowest in priority. Anna understands ~70% of why I can not be with him more often or spend time with him as I had before. For the 2nd time in over 3 years, I get angry with him and yell at him. And cry afterwards.

Sept 2015: I am so tired that I fall asleep,
while at a friends place, just after dinner

During this time:

  • Some family and friends do what they can to help. Offering vs being asked. And when asked for help, providing it and more, without hesitation. 
  • Some are downright insensitive and uncaring. I hear every excuse in the book, from "I have work to do" to "everyone's life is complicated, yours isn't special". 

So what can I do but laugh? And wish that the helpers never have to be in my situation. And the uncaring brutes? That they go thru a part of what I have, to know, really know, how bad it can be. I hope that it will make them more empathetic. Am I being uncharitable, mean, selfish, and a bitch. Yes, I am. It feels right!  

Chances are, that you know of at least one caregiver in your family / circle of friends. A parent or sibling, a cousin or an uncle / aunt, or a friend. You probably get a small view of their world when you visit them or call them (if you call at all!). That caregiver, is slowly dying without you knowing it. Worse still, is that they themselves aren't aware of parts of them that are dying. And dying they are. 

As you battle with the challenges of living a full life & leaving a legacy, your caregiver's battle is with death. The death of the patient. And their own death - the stresses of care-giving have been known to shave off 10 years from a caregiver's life.

Few people can understand the stresses and strains of care-giving. Even caregivers themselves will tell you that their stint is unique and different from others. But you can make a difference, if you really care. Really. Care.

  1. Give the caregiver a break. Not a day or a week. Give them at least 3 weeks off where they can go somewhere and really wind-down. 
  2. Know the patient and their care-giving requirements well so that you can provide hospital stay relief when needed. A good night's sleep does wonders for a caregiver.
  3. Ask caregivers how they are. And listen. Their health, both mental and physical is important, and they will ignore it. Help them improve their health. Take them to a doctor, commit to exercising with them regularly, take them for a movie or a meal. There are at least 50 things you can do to help.
  4. Commit to help. Be consistent. Don't pull back after telling a caregiver that you are ready to help. That is cruel; like offering a drowning person a life jacket and then pulling it back when they reach for it.
If you care, then reach out to help a caregiver. Today!

'Coz laughing ain't gonna help.

And life is a bitch. A real bitch!