Thursday, January 19, 2017

Crossing Something Off My Bucket List

One would expect that I would be super excited about doing something on my bucket list. Of course! But with that excitement comes worry. Before I talk about worrying, let's talk about what I am going to tick off my bucket list.

For years, I have wanted to attend the Jaipur Literature Festival. And for years I haven't. I haven't because of the same dreary reasons we use all the time - "I can't take time off from work", "I don't want to go alone", "I forgot to register", "I haven't booked a place to stay". And as a caregiver, there is the additional excuse of "Who will look after my father?"

Most primary caregivers (including me) will tell you that being a caregiver often leaves us feeling that our lives have come to a stop. There is only care-giving.  Our minds are more than just occupied, they are packed to the brim and overflowing. Overflowing with thoughts of medicine, therapies, patient daily activities, nutrition, entertainment, emotional support, dealing with emergencies & demands. We live in a world of "what-ifs" & "Oh hell". It feels like slowly drowning in quicksand.

It took me a long time to overcome what I call "the caregiver's Chakravyūha" (a multi-tier defensive formation that looks like a blooming lotus or disc when viewed from above. The warriors at each interleaving position would be in an increasingly tough position to fight.). We war with "I have so much to do to be a (perfect) caregiver" and "there is no time to do all that I need to do" adding "I need to also ensure that other commitments don't fall thru' the cracks" and wanting to do something purely for myself, by myself. And that causes guilt. When it shouldn't.

It took me time to break out of this unending spiral-trap Chakravyūha. I did, and so I am off to the Lit Fest with college-mates (Santana and Aradhana). Whoopee!! I am so excited.

I decide to tell Anna that I will be gone for 5 days.

Me: Anna, I am going to Jaipur.

Anna: Why? Do you have work there?

Me (for a split second I think of saying "yes" but don't) : No Anna. I am going to the Jaipur Literary Fest.

Anna: Why?

A simple question needed a simple answer.

Me: Because I like books. I like reading. I write.

Then there is a long pause. I expect that Anna, as usual, will ask me who will look after him. He doesn't.

Anna had a grey leather duffle bag like this one. His "last minute bag".

Anna: Sangeeta, I need a "last minute bag". Anna has always called cabin baggage as "last minute bag".

Me: Anna, you are not going anywhere. Why do you need a "last minute bag"?

Anna: I should have one. What if we have to travel?

Me: Anna, you need a "last minute bag" if you are travelling. You are not. I am.

Anna (still thinking he is going to travel): I need a place to keep my things.

Me: What do you want to keep in the bag Anna?

Anna: Lots of things. Pause.  My toothbrush & toothpaste. Shaving kit. A change of clothes. My pajamas. Bedroom chappals. 

Me: And a towel.

Anna: And a towel. And emergency medication.

He remembers everything that he used to pack. And forgets that he thought that he was travelling with me!

So, I am off. Sanjiv, my husband, is going to hold fort. 

I am not going to worry. I am not going to feel guilty. I am going to enjoy myself to the hilt. Just the anticipation gives me a high.

Jaipur ......... Brace yourself!

Thursday, January 12, 2017

You are Schtopal

Anna, all bundled up
My father is definitely slowing down. Earlier he could shuffle-walk to the big park behind his apartment. Now he barely gets to the gate of the colony. Previously we had more hours of wakeful cogent conversations. Now when I do have cogent conversations that last for 30 mins, I call it a good day.

As usual, last Sunday morning I decided to take Anna out for coffee. He was waiting patiently, sitting at the dining table for me at 11am, our usual hour.

Me: Anna, are you ready to go out for coffee?

Anna: Yes.

Me: Anna, where do you want to go? To Starbucks in the mall or to the Barista where we sat outside with Mamta and the family last weekend?

Barista at SDA Market
Anna: Say again!

Me: Anna, do you want to go to the mall or sit outside and drink coffee?

Anna: Outside.

I check that he is warmly clothed (something I check each day!), focusing on number of layers vs thickness of woolens. He says he is feeling quite warm. And off we go!

At Barista, he shuffles to a table outside the cafe, waits patiently for his coffee and treat. Today we have a double treat - coffee with Irish Cream flavoring and a paneer, corn, & cheese turnover. We chat about mundane things. And about his illness and the restrictions it places on him. It's like a "repeat it" game. He asks me to repeat questions and responses and I do.

Begumpur / Vijay Mandal Park
Photo Courtesey:
After coffee and a paneer, corn, cheese turnover I ask him if he would like to go to the "really big park". He says yes, and we drive to it. That is the easy part. Getting him thru' chained gates, walking down an incline and wheeling his wheelchair on rough red sand takes effort. But, what the heck, he loves the 3 km "walk" in the park.

On our way home, here is how our conversation goes:

Anna: Sangeeta, you are great!

Me: Really? What did I do?

Anna: You are great!

Me: Thanks Anna. But you have to say that! You are my father.

Anna: No, I don't have to say that.

Me: Fathers always think their children are great.

This goes on for a while. Then Anna changes tack.

Anna: You are very patient. 

Me: Yes Anna, I am.

Anna: You have listened and replied to all my questions and comments today.


Anna: You are schtopal.

Me: Schtopal? What does that mean, Anna?

Anna: I don't know. But it says what I mean.

I have no clue what he wants to say. I think of all the possible words in Tamil, Kannada, Hindi, and English that "schtopal" sounds like, but for the life of me I cannot come up with a single word or phrase. I even google it with no luck. Yet Anna is clear that it describes what he wants to say.

Perhaps Anna's Parkinson's and Dementia brain is creating a new language!

Thursday, January 5, 2017

' Tis The Season Of Dry Skin

Shed Snake Skin. Photo Courtesy
Early in October last year Anna's skin started to flake. And when I say flake, I really mean flake. His legs looked like they had dandruff. Not loose dandruff that can be brushed off. It was skin pealing but still attached by a tenuous skin-thread. And it was more on his legs than his arms; while his face looked well moisturized (like that of a baby's)! 

I teased him a couple of times that he was shedding like a snake. The first couple of times he did not react. Then one day he says, "It can't be like a snake's. We would be able to see a continuous sheath of skin. You have to find another term." And so I did. I just called it flaked skin!

I wasn't sure if I should run off to the doctor. I asked Anna if his skin itched and he said, "No." As the skin was not broken / cracked and it was not itching I decided not to make a trip to the doctor. I decided to research the internet and find solutions.

Dry flaky skin on leg. Photo Courtesy
One of the primary reasons for dry skin in the elderly is the absence of oil glands. Also, all my research told me that Anna had to avoiding hot baths, use a moisturizing soap, not use a heater / air conditioner, moisturize skin with a hydrophobic ointment / lotion, drink lots of water and avoid alcohol. All of which he did.

Anna is massaged everyday with mustard oil. We use a gentle glycerin soap for bathing. After a bath, he is again massaged with a Vaseline / coco butter lotion. Nothing worked to improve his skin. Then I decided to replace the lotion with coconut oil. And voilà, in 2 days all his flaking skin was gone! I couldn't believe it! It was again soft and wrinkly smooth. Now I could happily tell Anna, "Your skin is more baby soft and smooth than mine!"

My Parachute Coconut Oil
I have struggled with dry skin all my life. It is so bad that I even get dry patches on my stomach and back. When I saw coconut oil work so well with Anna, I decided to use it myself. Even tho' I did not like the smell of coconut oil on my skin, I bore the ever-so-slight discomfort for the health of my skin. And it worked! Surprisingly well!

I was so pleased with the effect of coconut oil, that at the first opportunity I got, I proudly pulled-up the sleeve of my shirt and showed Anna my arm.

Me: Anna, look at my arm. Is it looking different?

Anna: It looks like your arm.

Me (running my nail over my forearm): Anna, see my skin is no longer dry.

Anna: How come?

Anna sleeps as his face shines!
Me: Anna, I used coconut oil. Just like we used on you.

Anna: I hope it was pharmaceutical-grade coconut oil.

Me: No Anna. I used Parachute coconut oil.

Anna: You should only use pharmaceutical-grade coconut oil.

Me: Why Anna? 

Anna: You are young. You should use only pharmaceutical-grade coconut oil. Your skin has to last longer.

Me (I giggle a little at being called "young"): OK, Anna.

---- We continue to use a variety of techniques and lotions to keep Anna's skin moisturized and soft.
As I do for mine.