What Caregivers Don't Want To Hear

May 2015: Anna (in yellow),
with his brother K V Krishnamurthy (right),
and his housekeeper and attendant 

As my father's primary caregiver I have been at the receiving end of what I assume, is well-meaning and well-intentioned advice, comments, suggestions, sympathy, etc. Conversations with other caregivers tells me that there are common threads and themes. Here are some comments that caregivers wish they had not heard.

1.  "Caregiving must be so rewarding"

Most family-designated caregivers, like me, will tell you that caregiving sucks most of the time. It is tiring. It consumes me. It is draining. It is exhausting. I have to watch while my parent withers away. That is not a reward.

2. "Caregiving is easy in India. You have servants. It won't take much effort"

I won't presume to know how difficult or easy it is in countries other than India, so why do you? If you think corporate life is VUCA then you have not managed household help, attendants, service providers in India. It is the most VUCA world you will encounter. Employing people to help with caregiving does not solve it.

3. "It's easier for you to be a caregiver, you don't have children"
Caregiving is not easy. With or without children of your own. Just because I don't have children doesn't mean that I am sitting on my hands or twiddling my thumbs. I don't comment on your personal life or choices so why should you presume it is OK for you to comment on mine?

Caregiving - What You See
Is The Tip Of The Iceberg
Photo: www.SurvivalWorld.com

4. "I've done it too"

Yes, you have. And maybe better than me. But can you not lord it over me? Also, your experience and mine can and will be different. Our parents' illnesses are different. I am different. Can you give me some credit for being the primary caregiver of 3 elderly people and running 2 homes?

5. "Pray - it will get better." / "Have faith" 

If you are my friend, you know that I am an atheist. Why would you ask me to pray? I do not believe that faith will cure a degenerative disease or prevent suffering. My father is not going to get better. I would rather you say, because you have strong faith, "I will pray for you and your father, Sangeeta." It tells me that you are thinking of us. That you care. That your faith helps you.

6.  "Your dad recovered because I prayed / chanted for him"

I understand that you have strong faith, but do also credit his fighting spirit, the skill and care of his medical staff and our family support system.

7.  "You are blessed / you are getting blessings"

I find it hard to understand what these nebulous blessings are. Can you articulate them for me? For me a blessing is an easier life (and a painless death) for my father. And for me, the ability to do meaningful work, travel the world on vacations, read books. None of these are happening.

Photo:
Helping Hands - Building Trees of Hope Project

8. "Tell me if I can do anything to help you"

I know you mean well, but tell me what can you help me with? Buy groceries? Do hospital stays? Fill pill boxes? Cajole the ill to eat? Help me understand what you can help me with. I don't ask for help because you haven't invested the time to build a relationship with my father, or I think you have too much to do already. Friends who bring Anna treats or who pull me out for a movie or meal are the ones who really help.

9. "Here's an article on Parkinson's / Dementia. Maybe it will help you with your father"

Thanks. Most of what I get are interesting. But ever so often, I will get articles on things that are still in concept stage and hence not applicable to my father's situation, and I wonder if the person read it at all. Also, reading it makes me happy (about medical focus & progress) and sad (that it is too late for my father).

10. "Don't you have a brother?"

Even the most educated person will ask me this. And it pisses me off. So what if I have a brother. I am a daughter, and the caregiver. Why is it so surprising that I take care of my father?  Your question tells me that you have an unconscious bias. You don't think anything amiss when I look after my in-laws, but find it odd / surprising that I look after my father?  

11. "You don't want to hear about my problems. You have so many of your own"

No. That is not true. I want to hear about your problems. I want to be there to support and help you in any way I can. You are my friend. Your problems help me forget mine. They tell me that I am not alone. They bring my coaching brain and solutioning mind to the forefront.

12. "Lets not talk about our vacation. It'll only make you jealous"

Do you really think I am so shallow? Let's please talk about your vacation. Let me hear about the places and experiences you have had. Let me live it vicariously. It's definitely better than what I have been doing or can imagine doing in the near future.

13. "We stopped calling you to go out. You are never ready to meet-up"

What's left unsaid is "at the drop of a hat!" I am no longer the spontaneous person I was. I cannot drop everything and head out to meet friends at a couple of hours' notice. There are so many moving parts that I need to plan for and arrange, before I go out. As friends that I miss meeting, can you please plan at least 24 hours in advance. I do want to meet up with y'all.

14. "Lets meet in Gurgaon"

There are other places that we can meet that are convenient for you and me. I can't understand why people who live in Gurgaon don't want to travel to Delhi to meet up, but expect me to trudge to Gurgaon. Gurgaon is not the center of the universe. Can you please travel a wee bit to meet me half way?

Photo: http://www.techcentral.co.za/binu-expands-into-africa

15.  "You never call" / "You have become unsocial"

All my life I have been the person to call people to chat. To stay in touch. And now, when I am occupied, I am asked why I don't call them anymore. Huh? Friendship is a two-way street, buddy. Call me when you want to chat. Or call me because you want to hear my voice or react to something I have written. Make the effort. I am worth it.

16. "I don't know how you do it"

I don't either. I just do what has to be done. Early in the caregiving journey, I realised that I could not do everything perfectly all the time. So there are a number of things that fall thru the cracks. I let them. The critical things get done and so there is the illusion that everything is shipshape.

And finally, dear fellow caregiver or caregiver's friend, if there are other comments that we should add to this list, I'd love to hear from you.

----- Coming soon: What Caregivers Would Love To Hear