For caregivers, life can be a real b****. For caregivers, 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 it’s like? Here's a quick tour of my the last five months of my life.
April 2017: My father's majordomo, Tairas, goes on vacation for 3 weeks. I rearrange my life and work schedule to be Anna's majordomo 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 gruelling schedule. The new majordomo, Alex, arrives May 23. 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.
29 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 two 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 the 14th, I am conducting a programme 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.
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 the 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 the afternoon of the 1st. 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 through all of this, Anna and his needs are the lowest in priority. Anna understands 70% of why I cannot be with him more often or spend time with him as I had before. For the second time in over 3 years, I get angry with him and yell at him. And cry afterwards.
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".
Chances are, 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 and 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.
(After working in corporate India for over 29 years, Sangeeta has taken time off to look after her father, who was diagnosed with Parkinson’s Disease in 2008. Sangeeta hopes that these authentic stories will help patients and caregivers understand and appreciate the impact of Parkinson’s Disease. You can follow Sangeeta’s blog here.)
Related Stories in the Series:
My Anna Holds on to his Bata Sandals, Even as He Loses his Memory
Who Knew That Nutella Would Convince My Old Dad to Take his Pills?
For a Dad with Parkinson’s, I’d Get Him All the Junk Food He Wants
Pray, Why Does My 87-Year-Old Anna Need an Aadhaar Card?
When Anna Forgot the Words for Pain & Medicine & Suffered Quietly
A Dialogue: The Day I Saw My Dad For the Feminist That He Is
Why I’m Going to Research Organ & Body Donation For My Brave Anna