Laughing with dementia

In this post, Geeta Iyer shares lighter moments that make her dad smile and laugh. Laughter may not be the best medicine, but it definitely helps her dad and her live life loud and not just survive!

Heard this on a TV show the other day and it stuck with me: “You can laugh about things. You don’t have to cry all the time about life.”

Like most full-time caregivers, I had forgotten how to relax and be happy for a while, until help arrived. The stress was just all consuming. Within months after our move to India, I started losing weight and ended up with Alopecia Areata, something I hadn’t heard of before. I realized that it was essential to just laugh every now and then to feel sane, be healthy, to live. I had my crossfit gym routine in the US, I replaced it with yoga and found a small group of friends to do things with. Still a long way from where I want to be in terms of ‘working’, writing, visiting people, and having a routine outside of dad. The Alopecia is gone now (with treatment) and I am smiling more. Gaining unnecessary weight too!

My dad had some spontaneous words of wisdom for me today.

Me: “You are smiling, Appa! You look so happy!”

Dad: “What else can we do? Cry?”

Laugh and be random

One thing I try to do every day is hanging out with my dad for an hour or so and be totally random. It is usually after he has had his bath, which is around 10:30 am. I will bring up topics he can relate to, ask him questions that I know he can answer, or quietly watch him listen to his favorite Rudram chants. I like to just sit there with him, hold hands, and cuddle. I will often lie down with my head on his lap and feel his hands gently brush across my hair. I feel that all of this gives him a sense of familiarity, something dementia tends to erode. And it helps me create new memories in this odd, surrealistic father-daughter relationship where our roles are inverted.

Just like how Sue made Dani’s mother laugh, I try to get my dad to have a good laugh at least once a day. There are moments when he will just let loose and crack up, usually over the same joke that has been told 1000 times. 

Me: “Achupichu Amalakutti!”  

Dad thinks for a few seconds, trying to find what is on the tip of his tongue. Then, he exclaims, “Samisaarathu pondaatti!” (Saamisaar’s wife). Laughs aloud unable to contain himself. 

These are the first two lines of a four-line Tamil poem a prankster from dad’s village wrote decades ago, making fun of an apparently not so bright lady named Amalakutti. She was Samisaar’s wife, Y’s mom, and Z’s sister is the gist of the silly poem.

My mom: “Amalakutti was actually quite smart.”

Me: “Appa, how would the family feel if they heard this? Isn’t this mean? I think I am going to change this to ‘Achupichu Appukutti’!” (just an alliterative pet name I made up for dad to fit the poem). Dad keeps guffawing.

Two years into the care-giving business, I have learned a thing or two, and have my bag of essential tricks that work most times. This silly four-line poem often helps entertain dad and lighten a tense moment. Walk into the loved one’s world, distract and redirect is the recommended approach for handling agitation.

Learning to enjoy, once again

I used to think dementia is the very death of all things lovely, for me, my mom, and my dad. A well-meaning relative told me I need to ‘learn to enjoy this’ when I confided my caregiver woes to her. I couldn’t believe anyone would ask someone suffering from a hopeless disease to enjoy it; it seemed unempathetic and frankly pissed me off at the time. However, I feel that over time I have adapted and learned to have fun with this new avatar of my dad. There are heartbreaking moments of mourning what we can never have, the loss of what my dad used to be, but I know that there are still many things left for us to enjoy together. I am lucky to have the help I do, as otherwise, I would not be able to talk about enjoying anything with my dad. I would just be surviving this and be resentful.

May 30, 2019. Mumbai, India

Dad had just woken up from his afternoon nap. His naps are intermittent and can happen throughout the day. He is in a good mood today. I sat down next to him and picked a random topic: 

Me: “It’s so nice to see you happy, Appa!”

Dad: “Thank you.”

We make some small talk and I suddenly decide to try something new: 

Appa, do you know there is something called laughter yoga? People just get together and start laughing loudly.”

Dad: “Everyone will say we are crazy.”

Me: “No Appa, it is supposedly good for your health. Let’s try this. Ha ha ha!”

Appa stays quiet. I go again loudly, “Ha ha ha… Come on!”

Dad: “Ha ha ha, ha ha ha!” 

I ask Leela, our daytime helper, to join in and she does. We do a few rounds of this and I decide to switch to music.

“Let us sing, Appa, Sabhapathikku veru deivam (I start with the first line of a song popular in South Indian classical music). I know this one is familiar to him, so I often go back to this song.

Samaanamaguma,” he joins me enthusiastically.

He looks at me as he is unable to remember the next line. “Kripanidhi,” I hum for him. 

Kripanidhi ivaraippola,” he sings the higher notes passionately, keeps repeating the line. It is adorable to watch him take his voice higher and getting into the song. There was one time he tried to do a crazy improvization that was just hilarious! 

This is my new dad. 

May be different from the one who would buy me ice cream, after he had punished me for bad behavior. I feed him ice cream now, and my heart delights when he shakes his head in total approval. “Tasty, very tasty,” he says.

May be not the same as the one who would wake up early morning to make me coffee as I crammed for my college exams, or the one who would iron my clothes as I got ready for work.

I now coax him to have his glass of hot milk and two Marie biscuits. Feel proud when he can do it on his own. It is my turn now to get him the best mangoes in town like he once used to.

Still, when I put my head on his lap and he gently brushes my hair with his frail hands, I know that if he could, he would do everything in his power, just to buy me a few more minutes of sleep to make my life even slightly easier!

My relationship with dad has always changed as we became different versions of ourselves over time. Instead of mourning the loss of the one that can no longer return, I have decided to create memories with these new versions of my dad and me.

Appa, remember you were known as the lion of Chembur once?” Chembur is a Mumbai suburb where we live, where I grew up. Dad looks at me and smiles, “I am no longer a lion. I am a little kitten now!”

We both laugh together.

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An eternal dreamer, she somehow ended up with an unlikely Bachelor's Degree in Commerce from Mumbai where she was born, and a degree in management from Michigan where she would spend three decades. The many years spent working as a consultant in the realm of financial systems taught her that one can find passion even in unexpected places. Deep down, she still believe that the best version of her would be singing, writing, thinking and traveling with her extraordinary friends (or alone, as she has traveled many times). One fine day in Michigan, she woke up and had to make the decision of becoming a single parent to the two wonderful people, who had raised her and sacrificed for her, her Appa and Amma. Her 94-year-old father had been diagnosed with dementia. As she witnessed the cognitive decline helplessly, she felt more ignorant, imperfect, and unsure than ever before. It may have been a whim or an inevitable choice, but she wound up her life in the US and moved to Mumbai with her parents in April 2018. You can reach her at [email protected].

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