I realized the other day that there may not be many more Father’s Days when my dad remembers who I am.
That’s because he has Alzheimer’s. Already his memories are fading or jumbled. He forgets things he said only minutes earlier. He asks the same questions over and over and over again. And my father, an avid devourer of books all his life, has stopped reading, which has been the most heartbreaking change for me to witness.
Watching my dad slip away and become a shell of who he once was has been the most painful experience of my life.
He and my mom, both in their 70s, moved in with me and my husband and young daughter a few months ago when it became too hard for the two of them to live alone. Every day I see how he’s no longer the vibrant, intensely curious and confident father, husband, and grandfather that I remember—a man who used to get up regularly and give speeches for work, who acted as the master of ceremonies at Indian festivals, and who told spirited dinner party stories of his time as a young doctor on the front lines of the Indo-Pakistan War.
I already miss that man more than I can say.
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Not many people talk about what it’s like to care of someone you love who has Alzheimer’s, despite the fact that more than 5 million people in the US, mostly over the age of 65, have the disease.
Even with the progress that’s come from public acknowledgements of the disease—like Seth Rogen’s congressional testimony and last year’s Oscar-winning Still Alice—there’s still a stigma attached to Alzheimer’s, which means Alzheimer’s research is chronically underfunded, and support for families like mine is almost non-existent.
But it shouldn’t be so hard, emotionally or financially. There are times when I get angry, thinking of the millions of families going through this incredibly challenging journey on our own. It doesn’t have to be this way.
So I want to share what it’s like to have and care for a loved one with the disease, in the hope that it will inspire more of us to share our stories.
It’s a shock when you become a caregiver to your parent. Nothing prepares you for that moment when you realize that your roles have been reversed; that you must now, in some ways, parent your parent.
For me, it happened when I went back to my childhood home in upstate New York to celebrate my parents’ 50th wedding anniversary a couple of years ago. I noticed that the house was looking more and more rundown—there was a huge crack in the doorway, and the light fixtures in the kitchen weren’t working. And then I noticed the couch, where my dad sits every day for hours, was broken. The cushions had ripped, the stuffing coming out in clouds. But he had covered it with a blanket to hide the fact that it needed to be fixed.
My childhood home was falling apart. I felt like a terrible daughter, and I knew my siblings and I needed to do something. Things have never been the same since.
It’s exorbitantly expensive to care for someone with Alzheimer’s. For now, my family is still able to care for my dad at home without additional (read: hired) assistance. While I’m at work, my mom is there, and my brother, sister, and I share the responsibilities for managing the selling of their home, their finances, their medical needs, and other legal matters.
But I know we’ll have to hire a home care aide soon to help care for him, especially as my mom ages. But the shocking reality is: unless you’re very poor or very rich, you can’t afford a home care worker.
Medicare, which most people assume covers elder care costs like home care or assisted living or nursing homes, doesn’t actually pay for any of this. It’s Medicaid that pays for long-term care costs—but the catch is: you need to go broke and be below the poverty line before you qualify.
The out-of-pocket costs, if you pay on your own, are staggering—the average cost of a private room in a nursing home is approaching $100,000 per year, and home care, while more affordable, will still run you tens of thousands a year.
Even as a middle-class family, I don’t know how we’re going to be able to pay for it all, and worrying about it is keeping me up at night. It’s even made me and my partner half-jokingly say that we should have another kid, so that our daughter isn’t the only one who’ll have to shoulder the costs of our future care.
There’s no question that being a part of the sandwich generation (or what I like to call the panini generation because we’re all so pressed and stressed), is hard. I feel like I have a full-time job as one of my dad’s caregivers on top of my actual full-time job, while I also try to be a good mother and partner (not to mention taking care of myself). It’s impossible to do it all, and it’s exhausting to even try.
But I’m reminded every day that there’s a lot of joy as well in caring for my dad, who’s shown me so much love and care throughout my whole life. It’s a privilege to be able to give even a small portion of that back to him. I also see how my young daughter loves to spend time with him and her grandmother, and gets to spend more quality time with them than I did with mine. While he slips away, knowing my daughter will have memories of her grandfather is priceless.
And it’s a reminder to me to treasure those moments. So on Father’s Day, I’m going to tell my dad, “Happy Father’s Day, Baba. I love you. I promise to care for you, for as long as I can, and ensure that you have a good, dignified life—all the way to the very end.”