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I Have a Dad With Parkinson’s (& Here’s What I Don’t Need to Hear)

My dad is a Parkinson’s patient and I am often tired of people giving well-intentioned but truly insensitive advice.

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I Have a Dad With Parkinson’s (& Here’s What I Don’t Need to Hear)

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 tell me that there are common threads and themes. Here are some comments that caregivers wish they had not heard.

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“Caregiving Must be so Rewarding”

Caregiving consumes me. (Photo: iStock)

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.

“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.

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“It’s Easier For You to be a Caregiver, You Don’t Have Children”

Just because I don’t have children doesn’t mean that I am sitting on my hands or twiddling my thumbs. (Photo Courtesy: Sangeeta Murthi Sahgal)

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?

“I’ve Done it Too”

Yes, you have. And maybe better than me. But could 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 three elderly people and running two homes?

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“Pray; It Will Get Better”/“Have Faith”

I do not believe that faith will cure a degenerative disease or prevent suffering. (Photo Courtesy: Sangeeta Murthi Sahgal)

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.

“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.

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“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.

“Tell Me if I Can do Anything to Help You”

Friends who bring Anna treats or who pull me out for a movie or meal are the ones who really help. (Photo Courtesy: Sangeeta Murthi Sahgal)

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.

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Here’s an Article on Parkinson’s/Dementia. Maybe It’ll 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 and progress) and sad (that it is too late for my father).

“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?

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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.

(You can read the rest of the list on Sangeeta’s blog ‘Parables of a Parkinson’s Patient’.)

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(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.)

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