Who Cares

Caregiving - Can't Give If You Don't Care

Postscript: This post was supposed to be a narration of the chaplinesque that our life has been since Dad moved in with us. Serious. But it turned some other way. Dad is 85 at the time of writing, delirious with life (and surely some of the innumerable pills that he takes), wheelchair bound, faulty plumbing in most major organs, a regular contributor to op-ed political and social discourses in the major dailies in far-away Kolkata, churning out new volumes of work through prestigious publishing houses, repeats everything multiple times citing forgetfulness of having said it earlier, and receives more mails, couriers, phone calls and visitors than Madhavi, Dev, our housekeeper and I put together. He lives like he has always lived, playing kabaddi with the possible. In the midst of unimaginable challenges, his presence in our life is like a mystic raised middle finger to the world. And through it, he teaches us more than any master or mentor ever could. So I thought it would be nice to document some of the more hilarious, zen-like moments in a blog post. However, as words flowed, like chilled Maaza from my mind to the keyboard, it took on a life of its own. It also grew beyond what the proprieties of blogging consider sizeable. There are repetitions, of course and of thoughts and ideas, but I let them be as, how shall I ever survive this, they are traits of my father in me. This blog has seen greater and more futile rants, so I just let everything be. I believe this post is one of the more important things that I have to share with you. Enjoy.

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The last couple of years for us have been about loss and learning. While we have been through different kinds of losses in this time, the one that whites everything else out is the loss of Mom. Mom died last year at a time when we were looking forward to a new phase of life, that of having our parents move in with us. Dad had to go through the process of winding up his life in Kolkata more abruptly and with greater finality than he had bargained for and then settle in with us while dealing with the loss of his partner of more than five decades. This was compounded by a rapid decline (very rapid and a big decline) in his health, both physical and mental. He lost what little mobility he had and had to reconcile himself to a life with catheters and bags. The trauma of grief, a recent cerebral stroke, and age in general made for a depressing mix. All of this also led to significantly greater need for caregiving.

Caring for Dad has been more educational than challenging but that education wasn't exactly a free online tutorial at your own pace. With both of us working across the clock and a toddler at home, the missus and I barely had time to care for ourselves. With Dad, we did the best we could, without realizing what the implications were. With time, we began having to deal with very strange problems ourselves. We felt increasingly irritated, angry, self pitying and guilty, sometimes even acutely depressed and hopeless, in addition to the physical and mental exhaustion that we accepted as par for the course. We looked at holiday pictures people posted on social media and felt resentful and unfortunate. We ended up arguing and snapping at each other, at Dev, and even at Dad. He wasn't doing great either, though he put up a brave front. We could sense that he felt guilty and as if he was a burden on us. Communications between all three of us, and even Dev, took a beating as we were unable to clearly express what we were feeling. On the contrary, we often ended up expressing something totally different from what we really felt. We were not getting ourselves even minimum rest or recreation, since any spare time we had went taking items off our mandatory to-do list.

We were also denying a lot of what we were feeling, since to accept it seemed like a death sentence on the people we thought we were or wanted to think we were. We felt angry and resentful at Dad, for example, but could not accept it or talk about it, because as his children, that made us "bad people," something we were not ready to live with. We also felt guilty for not being able to meet his needs, along with the needs of each other, and rather than accept it and look for solutions, we vehemently defended ourselves and felt upset and hurt that others could not see what we did for them. We found it difficult to accept the compassion fatigue that we were experiencing. On the other hand, we expected more from each other, not realizing that all of us, Dad and Dev included, were experiencing this "resource constraint" in our own ways. We kept on the mask of being agreeable and caring, but when you are a part of a loving family system, it is difficult to keep your loved ones from sensing what is really going on with you. So we lived with what we were feeling, with a sense of what others were feeling, but without being able to acknowledge, talk about or resolve it.

It wasn't too long before it reached a point where all of us realized something had to change. As a family unit, we were experiencing emotional burnout that threatened to consume all that we cherished about our lives and selves. That was when we started seeking help, speaking with people, family members who have dealt with similar situations, reading up on resources for caregivers. It is close to a year that we set out trying to understand the challenges of caregiving, and I believe that what we learned will be of benefit to anyone who is in a similar situation as well as to those who have no reason to believe that they will ever be in a similar situation.



Caregiving is a part of life

Caregiving for someone who is unable to care for him or herself is a reality that most people will experience at some point in their life. Most care receivers not only did not plan their lives that way, but never even imagined that they would be in such a situation. Same with caregivers. Whether it is a chronically ill child, a disabled spouse or an aging parent, it is a reality whose prevalence you fail to realize till you are faced with it. It is a part of life in the sense that human life is frail and no one can guarantee that the system will run perfectly all the way through or even part of the way through.Most of us see it as a situation that happens to others, not realizing that we ourselves might, at any point in time, find ourselves at one or the other end of the caregiving-receiving continuum.

More important though is the perspective that it is a part of life, and not the whole of life. Even when you are the only one caring for your loved one, and it seems like that is all there is to life, there is more. Caregivers often focus on caring for their loved one to the exclusion of everything else, including themselves. They feel lonely, misunderstood, unsupported, unloved, and most debilitating of all, unfortunate.

The first steps in our recovery as a family unit dealing with the challenge of caregiving was to see it as an opportunity to improve the quality of all our lives. In a world of finite energy, finite time, and finite resources, this is easier said than done. Our crisis taught us to prioritize these very gifts in a way that we all could move towards wholeness. We began to see being able to care for a loved one as a privilege and not just duty or devotion. We began to make time for ourselves as a couple and as parents. We resumed meeting with friends and socializing. (We make it a point to have a friend over for a meal at least once in six months, I doubt we could bear anything more frequent.) We began to eat, rest and play better, albeit in small doses given the limitations we had. We realized that our role was not limited to that of being a caregiver. Initially, all our conversations with Dad revolved around his grief, his depression, and his medical condition. We identified this and consciously started engaging with him on an entirely different set of terms. We joked about his dementia foibles, his current girlfriends, threatened to find a match to marry him off (usually to people he found most disagreeable), laughed about his bags and pipes misadventures, and encouraged him to take his disabilities as a baseline and then work up from there.

Once we were able to see that caregiving was just one part of a larger, fuller life, the drowning intensity of what we were going through eased up. As we started tending to the rest of our lives, we found it easier to tend to the task of giving care.

You cannot give care if you do not have care to give

In order to give, one must have an abundant source of caring within one's self. This is usually linked to feeling cared for yourself, feeling safe and supported in your universe, feeling a part of a larger whole. This can be especially difficult if all you are seeing in front of you all the time is despair, decay and degeneration. Not only is caregiving demanding physically, but it also makes incredible demands on your emotional, mental and spiritual health. This is more so in cases where you are caring for the elderly or the terminally ill.

When Dad's health took a downturn, we were so caught up in trying to care for him, we forgot that we are part of a system. Family members who had similar experience, friends who were willing to help out, social and medical services that are a phone call away. We felt we were in a private, personal battle with no tangible support. We even failed to see that as a couple, we were a support system to each other. Fortunately, before we could drive ourselves too far along this road, friends and family muscled us off it. They offered to babysit Dev, they offered to babysit Dad, and sometimes they offered to babysit Madhavi and me. When they encouraged us to go for a movie or for a dinner, we felt they were unable to understand the situation - because in our mind, to go out and have a nice time while Dad struggled alone was an act of betrayal and inhumanity. When we gave in and did go out, we realized that the world not only did not end, but looked a lot better for the spiritual succor that our time together as a couple or a family gave us.

In our particular situation, I was out of the home for 13-14 hours of the day, and almost all the caregiving functions were carried out by Madhavi. She did this while working a full-time, stressful job from home and taking care of Dev. She would look forward to my days off, when I would be able to give her some respite and some me-time (as in she-time, not subho-time), but on weekends and holidays, I would be obsessed with having time to myself to rest and recreate my way, preferably towing her and Dev along. She did this cheerfully (most of the time) and led me to understand that we were stronger and more deeply connected to the universe than we imagined we were.We also struggled to express our needs to each other, stuck in the cycle of guilt, blame and anger, and the process of getting out of this cycle tested and strengthened our relationship.

You cannot keep making withdrawals from your emotional bank indefinitely if you are not making some deposits from time to time. It might be in the form of time out as a family, spiritual practices like prayer and meditation, stargazing cuddles, a night out with the boys or at the movies, or even just a good sweaty workout once in a while. Remember you are responsible for yourself before anything else. If you are yourself impaired physically, mentally or emotionally, you are impaired in your ability to care for another person.

You can prepare yourself to give care

Most people who find themselves in a caregiving situation are overwhelmed by the task at hand. Caregiving does not give you a lot of advance notice, expect in cases like autism or early dementia. As a result, one is not only faced with the task of giving care, but also the task of understanding and being sensitive to a medical and psychological terrain they are totally unfamiliar with. As an Indian, I have been led to believe that love and responsibility flow naturally – kind of like sex for the first time on your arranged marriage wedding night - that if you love your care receiver, you will automatically know what to do. If you do not, something is wrong with your love. As caregivers try to negotiate the new terrain based on their "normal" rules for life, they can face failures, obstacles, setbacks, and even sheer hostility. These can be very damaging to the self worth of the caregiver.

Learning about and being sensitive to what the care receiver is experiencing is critical to successful caregiving. One of the problems with caregiving is the time frame. All of us are evolving as people all the time. Your loved one is too, and with it how he or she feels about the disability and the need for care. Specific medical conditions come with specific problems. You might need to lift, support and transfer, or you might need to remind him who you are. You might need to help clean him up, change clothes or sheets or change catheters and bags or you might need to help him take the right meds at the right time. Then there are things that you might not need to help with. All of these change with the context and with time.

End of life issues are another set of challenges, and the emotion of it is more challenging than the medical or socio-legal aspects of it. The duration of time that care is needed is another variable that we have no control over. Given all of these uncertainties, the best we can do is to equip ourselves with the best understanding of the specifics of caregiving pertinent to your situation.

I have known people who believe that as one grows old, they should "retire," take god's name and confine themselves to a corner far from the lives of others, in the tradition of vanaprastha, not be a bother to anyone, just take the mattress out into the courtyard and wait for death. With due respect to the vedas and the upanishads, I disagree. Mom published her first book at 72 - a memoir for her grandkids, her second at 74 - a tribute to her mother-in-law, and was working on two other volumes when she died. Dad learned how to use a basic mobile phone 5 years ago; today, he drives everyone nuts with his missives at all unearthly hours. He works 10 hours a day, takes care of his personal needs like transfers, bathing, meds, and continuously educates us on history, politics, religion, sociology, literature, films, football, the list is long, and the depth of wisdom beyond comparison.


A rational approach to humanism stresses on the importance of the present, and the immeasurable value of even a single day of human existence. We encouraged Dad to build projects that were challenging so that he could place his life in a larger timeframe. We held him responsible for his prophecies about what good Devank would come to by insisting that he be around to be proved correct. We reminded him of things that he and Mom had dreamt of but not fulfilled. Given his Heath Robinsonian situation, all of these might have seemed absurd to an onlooker, but to us and to him, this defined the intensity with which each new day was to be lived. And hey, it has been a number of days, and things have only gotten better.

Depending on the level of disability, there are things that can be done to live in the present more meaningfully. This will differ from person to person, but in our case, it was things like old Hollywood films (include the terribly teary, depressing ones), fights with Dev over Dad's pencil case or the keys to his study locker (which child can resist a grandparent's hoard?), red meat biryani, a wheelchair ride in the garden to see the trees and flowers, an almost impossible, eyebrow-raising fine dining outing, and long drives suffixing hospital visits.

Being willing and able to do all that is possible to move away from the stress and demand of caregiving and move towards the joy and reward of caring for someone you love has another upside to it - the improved quality of care, and the improved quality of life that it brings for both the giver and receiver of that care. Even when dealing with terminal illnesses or conditions that worsen with time, this effect is noticeable. Dad has conversations with us now that we have never had in our lives. We talk about how life conditions us to live out scripts that might not be valid, for example, and we are able to have such conversations without malice or regret. We talk about things that happened in his or our lives that we did not agree upon then and do not agree upon now, and we are able to disagree without anger. In the interest of privacy, I will not detail specifics of such conversations, but will emphasize that just being able to have honest and nonjudgemental dialog about one's life, one's roles, one's mistakes and regrets can bring healing that no medicine chest or office couch can.

Dad has been at work doing what he knows to do best – write to warn coming generations about the dangers of ignorance. He has a list of things that he knows Mom would have liked him to achieve in his lifetime, and he is slowly going about his to do list. At his age and with his severely limited function, it is a marvel to watch him do what he feels he needs to do to honor the love of his life. There was a time when we used to hand all credit to him. Today, we do not hesitate to stake claim to some of that achievement.

One of the lasting lessons from this time for me has been the resistance we have to accepting our situation and accepting help. Asking for help is not that difficult but to accept it with humility and grace is difficult. I see it in myself and I see it in Dad. We rage against our inability and we rage against the help we are offered. Till I did not start reading about this dilemma that most caregivers and receivers face, I was not even able to identify it. Now that I see it, I believe it is my responsibility to share my understanding.

I hope this post will help those who are caregivers or are preparing to give care. I also hope it will be of benefit to all others. In one of our conversations with Dad, he explained their "miscalculation." He said, "Your mother and I, we did not realize that we would live this long, become this old, this infirm. We also did not realize what life would be like when we became this infirm."

This applies to all of us. We believe that life will go on as it is, that we will continue to function as we are, that we will never need to be cared for. The truth is everyone needs to be cared for - perhaps in different ways but at all times. It is only the degree of need and the ability to express it that varies.

If you are reading this paragraph after skipping the rest of the post, please leave a comment. If you have read through all of the nearly 3000 words of this post, our respect. No comment needed. 

10 comments:

  1. Caregiving is a role most of us must take on at some point of time in our lives. Reading your post made me realise how grossly unprepared we are for it. Of course it’s a learning curve where we get to discover horrible things about ourselves. Thankfully with the right attitude and self awareness, it can be changed.
    Thank you for writing this piece.

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    1. Thanks, Purba. Preparedness leads to being able to see caregiving in a different light. Instead of struggling one is able to enjoy the gift of life, of companionship and of love. Pity it doesn't happen by default though.

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  2. I have read the entire post abs could relate with a lot you wrote. I was a caregiver a long time ago when mum was ailing. She was half your dad's age and it was a very tough time for a younger me. I would ask you to read the book Being Mortal. It focuses on care for geriatrics and I found it stunning. All the best to you guys. This is a very tough time for you and it can take a huge toll on your relationships.

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    1. Thanks, Rachna. Will look out for Being Mortal. If the situation is this demanding for us at our age, I can only imagine how challenging and frustrating it must be for younger people. As a society, we have a long way to go to realize and appreciate the intricacies of senior care.

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  3. Fantastic and enlightening post. There needs to be more dialogue about caregiver and compassion fatigue, especially in the Indian context. Reading through your post I could not even imagine the things that your dad, you and your family were going through but hopefully sharing this will help us, the readers, find some light in our darkest times. You showed us how we can be more sensitive and sensible to the seniors of our society by also taking care of our loved ones physical, spiritual and mental well-being. Bookmarking this.

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    1. Thanks, Sandeep. The bright side of the story is that it actually builds you up, strengthens you and helps you find meaning in relationships that you would otherwise take for granted. Do share this post with your friends if you want to.

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  4. Subhorup, Nice post that comes from the heart. As you aptly put it, "caregiving is a part of life" journey!

    #my2cents http://www.mohanbabuk.com/2017/12/musing-on-caregiving-for-elders-and.html

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    1. Thanks, Mohan, your post is very touching and helpful too. Preparedness can make a world of difference, and efforts like yours and mine are a small contribution to help others be prepared.

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  5. I once expressed caregiving as "living in a continuum of meaning." I would ask myself what is the most meaningful thing I can do right now, constantly throughout the day. And you have expressed in detail what that meant to me every day. Especially about not getting a minimum of rest or recreation. This post is hilarious at times and tragic at others, just like life. You've written something lovely, thank you. I haven't written anything nearly so comprehensive, but I did touch on the subject recently: https://www.nixgluten.com/2018/02/senior-citizens-and-celiac-disease.html I wish your family lots of happiness!

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    1. Thanks, Angelica. I have unconsciously been returning to your question of what is the most meaningful thing now repeatedly over the last couple of years, and it is helpful in dealing with the present. I will read your post at the earliest.

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