Recently a friend tending to his cancer-stricken father requested me to create a cheat-sheet for him -- a one-page list of what to expect and how to understand a diagnosis of cancer.
I replied that the journey of every patient is different. Based on that, it is always my goal to empower patients to take the lead in their own medical decisions. Providing knowledge is the better solution rather than giving an answer that may or may not be suitable depending upon the case.
Nevertheless, the conversation did spark in me the need to address caregivers around the world. This is my list of the top 10 things that every caregiver needs to know.
10. Stress is faster to spread than any tumour. You aren't the patient, so stop acting like you are. Unless you wish to usurp your loved one, be there for them and lighten their stress, don't increase it.
9. Every patient is different. Just because it worked for Uncle Neal or it didn't for Mrs. Thomas does not mean that the same is going to happen here.
8. If Dr. X said something, it does not mean that's the only option. Doctors base their assessments on the knowledge they have and the understandings they've developed over the course of their studies, practice and patients. It's important to trust your doctor, but just remember that they don't necessarily have all the answers.
It's unfair, it's unkind and no matter how much you try, you do, you expect - you may not see the result you want. As a result, rather than solely focusing on gaining 'more life', focus on 'living now'.
7. Rather than make decisions for the patient, first and always give them the choice. Even when they feel helpless or nauseated or are in extreme pain. Remember that when they are losing control of their body, reminding them that they still can control something can often be more therapeutic than any medicine.
6. Be there without expectations of appreciation. Saying is not doing. Doing goes without saying.
5. There's a lot of pressure being a caregiver. But like every patient needs support, so do caregivers. Do not neglect yourself in the process of being there for someone else. We are all one step away from trading places -- let's not make that any easier.
4. Be content with who is there and be grateful for what is there. Focusing on why someone isn't or something isn't does not help in maintaining a positive attitude.
3. This is a disease. This is an illness. It does not have to be an isolating experience and you are not the only one in the world facing such a challenge. It's unfair, it's unkind and no matter how much you try, you do, you expect -- you may not see the result you want. As a result, rather than solely focusing on gaining "more life", focus on "living now".
2. There is never a bad time to discuss end of life issues. Conversing about our wants and needs is not morbid nor does it mean that it's going to happen any sooner or later. Be prepared no matter what and do it with a smile.
1. Being a caregiver can be the most rewarding but thankless job. It's up to us to decide which way we take on this role. If we are doing it out of duty, responsibility, obligation or to show others we are just caretakers. If we are doing it because we can't think of anything else other than "caring" to "give" for that person -- then we are doing it for the right reason.
While we shouldn't let a prognosis dictate what we are capable of giving, when such a challenge comes towards us, we must step up and know that the more we advocate, the more we can support and enliven the patient's life who in turn becomes that much more secure in living life and if need be, letting go. This does not mark your failure. You did what you were meant to do. And ultimately, no result takes away from your efforts and energies - and at the day's end - you will be at peace knowing you were there for your loved one through their most challenging hour by enabling them to remain empowered, no matter what.
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