On World Alzheimer’s Day - Take Care of Yourself, Fellow Caregivers!

My father waits patiently
to meet a doctor at Apollo, Delhi.

In India, most children fall into the natural role of becoming caregivers for their elderly parents or parents-in-law.  More often than not, as women tend not to work, the role of care-giving falls on the women of the household, normally a daughter or daughter-in-law.

Whereas looking after any patient can be stressful, research shows us that looking after a patient with Alzheimer’s or Dementia is the most stressful.  It is stressful to manage a parent whose short term memory is bad or completely lost, with a parent who gets frustrated and angry with their inability to remember even basic things, with a parent who seems to be physically OK but mentally not there, a parent who is disoriented, or one who has delusions or hallucinations.

I look after my father who has Parkinson’s disease and Dementia, among other things.  So in addition to all the Dementia related issues, I also need to deal with the physical disability that Parkinson’s causes.  

At a Vyaktitva session on Human Performance Improvement

I worked for over 29 years in corporate India, managing large, globally distributed teams, have survived bloody mergers, acquisitions, divestitures, and it pales in comparison to managing my sick father’s home and health needs.  I finally, gave up working a full time job, and do some consulting, but a major chunk of my time and effort goes into managing my father’s home and health.  And that is more than a full time job.

Even now, when I am asked what I do, my standard, reflex-response is “Nothing”.  And that is a big lie.  I do a hell of a lot of work.  I am just not paid for it.  The work does not have a time slot in a day or week or month. There are no appraisals and no increments.  There are no awards, rewards, and recognition.

I fall asleep, out of sheer exhaustion,
in the middle of a conversation,
at a friend's place 

Unfortunately, with all the activities and mental space that my father’s care takes up, I forgot about myself, the caregiver.  I became, what I thought was, the only person who could take care of him.  The person solely responsible for him, 24 hours a day. Literally, 24 hours a day.  Always on call, even in the middle of the night or the hour before dawn. Even when I was at dinner or at the movies.  I carried my mobile phone to the bathroom.  I spent less time at the parlor.  I can’t remember when I last had a manicure or pedicure or a head massage.  My conversations revolved around my father, what he was doing, what he wanted, etc. and not about me, what I was doing, or thinking or what I wanted.

But caregivers, like me, need to be cared for too!  If you are a caregiver, then let me tell you, NO ONE is going to take care of you.  I have realized that I need to take care of myself too.  I need to demand care for myself and from those around me.  I don’t do this well myself.  It is a struggle.  I am trying. 

So here is my list of care giving that I believe all caregivers need for themselves:

•  Give up the guilt: I don’t know why I feel guilty.  I am doing a lot.  I am doing things to the best of my ability.  My father is happy (so he says).  Yet I feel guilty.  Guilty that I am not doing more, that my father gets depressed, that his health is failing. I have to consciously keep telling myself not to feel guilty.  I have to be realistic about what I really can and can not do.
•  Don’t over-research the disease and prognosis:  This is a tough one.  I need to research my father’s illness so that I can understand and deal with his symptoms.  But the prognosis of his diseases frightens me. I don’t know what I am going to do if and when my father reaches the end-of-life stage.  Can I watch him slowly starve to death, or lose his ability to breathe?   I don’t know.  What I do know is that I don’t want to.
•  Take time off: Find someone - an uncle or aunt, a cousin, a brother or sister and ask them to look after the Alzheimer’s / Dementia patient parent for a couple of weeks at a stretch, and as often as you can get them to give you a break.  And yes, a couple of weeks. A couple of days are not enough.  You need to cut off completely from care-giving responsibilities to really unwind.  Go away in these two weeks.  Don’t call.  Don’t think about the patient.  I have not done this myself till now.  Starting tomorrow, I am going to take time off for 10 days!
• Find or rekindle a hobby:  If you already have a hobby – reading, music, painting, photography, biking or anything that you enjoy, then rekindle your interest.  I used to read 35-45 books in a year.  Since January this year, I have read 1.5 books.  I have lost something I loved to do.  Reading a book and going to different lands, learning new things, having new adventures.  I have lost all that and I recognize I have done this to myself.  Now I am slowly hobbling towards rekindling my hobby of reading.
• Do something artistic: I wanted to write. There were earlier attempts, but they all fizzled out for various reasons. Then I got great advice from my friend Justin, “Write for the pleasure of writing.  If something comes of it, then consider it a bonus.” And I did write. Then I created a blog. Then the blog posts got picked up by people. Then I got commissioned to write articles. WOW, what a feeling it is!
• Learn something new: I want to learn dancing. Perhaps even belly dancing.  I’ve looked for dancing schools nearby but haven’t really found any good ones and have not yet signed up.  What’s holding me back?  Well, wondering if I will be able to keep up with the schedule of dance classes with my consulting work and care-giving responsibilities. 
• Have THE CONVERSATION with the patient parent: This is the conversation on what our parent would want in terms of end-of-life care and/or medical intervention when their illness progresses to a stage where we can no longer take care of them ourselves. I have agonized over this conversation for over a year. The one time that I had a conversation with my father on the medical intervention he is OK with, and with his doctor on what we can do, there was a sense of relief. I have not had the complete conversation.  But I am working my way towards it.
• Laugh a lot.  Laugh out loud.  I find that when I laugh with a friend / family member, or laugh when I read a joke on WhatsApp or Facebook, I feel better.  But there are times when I am out with friends who are all having a good time and laughing, and I feel hollow.  It depresses me. But if I can find something to laugh about, then I laugh, no holds barred. The effect of laughing may last for a few minutes or for a few hours. However long the feeling lasts, it is worth it.
• Exercise: I am personally not great at this.  I walk 6 kms in a little less than an hour, 2-3 times a week.  Nothing great at all.  Not enough, according to most wellness advocate’s advice.  But, it is better than nothing.  And the days I walk, I feel good.  When do I get the time?  In summer, I wake up at 4:45am and hit the park at 5:30am.  What will I do in winter? Well, walk in the early evening, I think.   

This is not a complete list.  And I am not an expert on helping caregivers take care of themselves. I just hope that this post with help start a dialogue between caregivers so that we can help each other.

First published in The Quint on 21 Sept 2015

The Sandal Skirmishes

Anna has a pair of Bata sandals that he guards as if they are two bars of solid gold. I don't know how old they really are.  All I remember is that Anna wore these sandals even before Amma died. That was over 4 years ago. Even then the sandals looked worn out. Now, they are just simply falling apart.

In the beginning of summer this year, I decided that Anna needed a new pair of sandals.  More because I was embarrassed to see his feet ensconced in tattered sandals, than anything else.

Bata Store at DLF Mall, Saket

So on one of our weekend expeditions, we took him to his favorite shoe store. Bata, of course! Here is how the conversation went.

Me: Anna, we are here to look for new sandals for you. Do you see anything you like?

Anna, looking down at his feet, safely resting on the pedals of his wheelchair, covered by tattered leather Bata sandals:  I already have sandals

Me:  Anna, they are old.  You need a new pair.

Anna: I hardly walk.  These sandals are fine for the amount of walking I do.

Me (being as encouraging as I can): Anna, just look around.  Maybe there is something here you will like.

Anna does not move his eyes even a nanometer. So then, I start picking up sandals and pushing them into his hands or just dropping them in his lap.

Me (being sneaky, leveraging Anna's leather technology background, to get him interested): Anna, is this good leather?

Anna succumbs to the lure of leather and starts to examine the sandals in his hand.  And of course, I am told about the quality of the leather, whether the cow / calf was healthy or not, the dyeing process, how the leather was treated etc. Comments that I have heard a hundred times before. Comments that are comfortable to hear, because, I have heard them a hundred times before.

Slowly and surely,over the next 30 mins, we find a pair of sandals he finds comfortable.  Before he can see the price, and ignoring all requests to know the price, I buy the sandals for him.  If I thought that was a victory, I was mistaken.

Me: Anna, would you like to wear your new sandals?  We can leave the old sandals here for the store to throw.

Anna: No!  Lets take them back. I can still use these sandals.

Me: Anna, these sandals are old.  You now have a new pair. Lets throw the old pair away.

Anna: I can still wear the sandals. Then comes the whammy! Just because they are old, does not mean you throw them away!

Little did I know then that it was the beginning of what I now call "The Sandal Skirmishes". Skirmish 1 was won by Anna!

Over the next few months I have tried to get rid of the old sandals and have lost each skirmish.

Skirmish 2:

Me: Anna, lets throw away your old sandals.  They are so tattered, you will get blisters if you wear them

Anna: You get blisters from new sandals and not old ones, Sangeeta

Skirmish 3:

Me: Anna, the new sandals are comfortable, right? Lets give away your old sandals to someone poor who can use them.

Anna: You said they are too old and tattered for me to wear.  How can you give them away for a poor man to wear?

Skirmish 4:

Me: Anna, don't you agree your new sandals look nice? Is it time to throw or give away your old sandals?

Anna: Lets wait a little.  Till then, can you find my other pair of glasses? When you do, I'll think about throwing away the old sandals.

With each skirmish he wins, his grin becomes wider.

He has not worn the old sandals since the day he got his new sandals. The old sandals are kept safely under his bed.  He asks to see them every now and then.  For a man who often forgets the day of the week, or date, or what he had for breakfast / lunch, or whether it is morning or evening, or which city he is in, he sure remembers his leather Bata sandals!!

Perhaps, he and the sandals are linked by memories of years gone by.

Perhaps, it reminds him of a time when life was sickness free.

Perhaps it reminds him of visiting relatives, or walking in markets, or going to weddings / munjis (thread ceremonies) / house-warming poojas with my mother.

Perhaps it is a reminder of days when there was never enough money to buy all the new things we wanted.

Whatever it is, this pair of frayed, battered & tattered Bata sandals, which were the pride and joy of my father's feet, are still loved and cherished, even tho' they are no longer worn.

The Sandal Skirmishes have been won, fairly and squarely, by Anna!