Echoes across dementia caregivers, touching lives

I have been sharing my experiences as a dementia caregiver in India, but I am just one such caregiver. There are many more, most of them invisible, unheard, shrinking into anonymity while coping with their overwhelm. Caregiving is not recognized as a role in India. And sometimes, as Shikha Aleya has said, caregivers are invisible even to themselves.

When I began blogging about my experiences two-and-a-half years ago, I was desperate and wanted to use writing as a tool for catharsis and also to examine my feelings. I hoped writing would help me crawl back up into a more wholesome life. I had nothing to lose; there were no friends helping me, anyway. There was no harm in spilling it out. No risk.

For well over a year, as I’ve become more and more involved in dementia awareness programs and caregiver training, I’ve met and talked to many caregivers, happy, unhappy, reconciled, overwhelmed, people willing to open up, and people all frozen inside and unable to look at their core of pain. I’ve met them in person, and over phone calls and e-mails because they read my blog or saw my site or otherwise heard of me through a common contact. They want help. Caregiving for a loved one with dementia had affected them in ways they had not imagined possible.

I’ve met people who have woken up one day to find that the person staring back from the mirror is a pale shadow of the person they were earlier…

In all this meeting and talking and sharing, I’ve realized that more caregivers need a voice, and that access to such caregiver voices may be useful to other caregivers and to people concerned about caregiving.

Towards the later part of last year, I began creating a website that included a forum where I could put up interviews with dementia caregivers. Give them voice, visibility. I would talk to them so that they could experience some catharsis. Their experiences would be available to others at an earlier stage of the caregiving journey. As I saw it, each caregiver’s journey has unique elements, and there are also echoes of similarity across caregivers. Surely it would create a sense of community and solidarity and support if these were visible?

I began approaching caregivers–some directly, and some through acquaintances. And I’ve found out, up close, how difficult caregivers find it to talk in the open about problems created by the dementia of their loved ones, and how they have been struggling to provide appropriate care.

In a close group such as a support group, where people around them understand caregiving, the caregivers freely open out their bewilderment and wounds. But many of them are scared of exposing these hurts to the outside world, even under the cover of anonymity, even with all identifying details obscured.

I understand the need for anonymity only too well, and it is so sad that the environment around caregivers is such that they don’t feel confident about openly acknowledging this caregiving aspect of their lives. There is a sense of fear of being judged by others, or being seen as weak or foolish or inconsiderate. Or there is a shame in admitting that a parent or spouse has a problem that an ill-informed society judges as a non-problem or a “mental illness” (I dread to think how families of people with mental problems cope). Most of the times, as caregiving is an unexpectedly thrust role, people learn by trial and error, and there is “guilt” merely because a loved one is ill and not getting better. And in dementia, patients get progressively worse whatever you do; there may be some improvements, but the overall trend is downwards.

Guilt when nothing wrong has been done…After all, they did not aim to be caregivers, did not train for it, were not supported by the systems around them, often not even the medical systems.

Take Varun (not his real name), for example, a person I “met” and then “interviewed” using e-mail and phone. In the interview, he describes how his father’s Alzheimer’s affected every sphere of Varun’s life. In addition to suffering from the confusion of dementia, Varun’s father was smoking excessively, a habit that was destroying his health. The family was trying to help him change his smoking habit, a challenge made greater because of the father’s inability to understand the problem. Read of Varun’s loneliness, in that heart-wrenching description:

My leisure time and social life dipped to zero. If I felt like having a drink – and I did feel like that often – I drank at home, after everybody had gone to sleep. Interactions with friends happened through my laptop. Happiness moved online. I decided not to have any romantic relationships in my life for many reasons. One, I wasn’t in the frame of mind to actually contemplate romance. Two, I didn’t want to complicate my life further. Three, I knew that a special new person would draw me away from my immediate responsibilities.

And none of his friends know, except possibly a very few close ones. He probably dons a cheerful face for them, maybe parties with them. They do not know of this part of his life, and they cannot help him.

What is to be appreciated is that Varun spoke up, even if he chose a pseudonym. He faced the truth in his heart and opened it out, and was willing to see his sorrow and guilty thoughts spilled over the web. It takes courage.

There are many others I have spoken to who are unable to even face the painful years of their lives spent in caregiving.

Some of these persons who find it difficult to speak out, even under the cover of anonymity, were not even direct caregivers; they were children in a family looking after an elder with dementia. Some months ago, I approached one such caregiver to share a few incidents from the past; this person really wanted to help others facing a similar predicament, but found it extremely difficult, and wrote back:

I really can’t remember anything. It was painful at the time  to see my beloved that way, my mind seems to have blocked out many things.

This caregiver is referring to a patient who died some years ago. Obviously this person still carries a core inside that is frozen and dare not be touched…

As I said earlier, people who talk openly to me of their problems are often unwilling to share their pain and dilemmas publicly. Or they feel compelled to whitewash away the troubles and do not want to mention any episodes where they were angry or frustrated or the patient acted too oddly. Even under the cover of anonymity, on a site that no one they know will ever visit, they fight shy of opening up.

For every interview I have placed online, there have been two I have not been able to place because the families, after having spoken frankly to me, changed their mind about sharing their experiences in public. They just want to move away from the memories. The good part is that speaking to me helps them reach closure. I sometimes feel that the value of my interviewing people is helping them reach closure, and if they ultimately to agree to share the interview with others, I should consider that a bonus, an icing on the cake 🙂

The point is, for caregivers to share openly, we need a non-judgmental environment. An environment where such sharing is treated as an honest attempt to examine a situation, and will not become a matter of “shame.” In India, dementia caregiving is not a honored role, and this shows in the defensiveness I see around me. Yet, this is an unfortunate cycle, because if people do not see others sharing, they do not share their experiences.

We have to break out of it.

A few days ago, I got a note from Rukmini (name changed, of course), who wrote about how her mother and aunt, who took care of a patient with vascular dementia, remain ignorant about dementia and caregiving even now. Rather, they still remain in denial about dementia, because admitting that dementia is caused by genuine medical problems means admitting they didn’t do the best they could have done. Rukmini feels:

Part of the problem is because our family has always claimed to have solid “values”; everyone is highly educated, in good positions in their jobs, well-respected in their social circles, and many elders are known for their spiritual and philanthropic works. In a family of this profile, one expects that everyone will rally together to do what is right. Mom and Auntie have both taught in colleges, and were known for their strictness. I have often heard them lecture others on how elders must be respected and how the new generation did not take good care of their parents and in-laws. I guess it is embarrassing for them that they placed their mother in an old age home. Perhaps their emphasis on how difficult Nanima was, is their defense against unsaid accusations.

When I read what other caregivers say about their problems, I often find echoes of my own experiences and experiences of people I know. Like when Nayantara talks of her father (a dementia patient) suspecting her intentions. He wanted her to sign a stamped paper to protect himself. Like when Rukmini’s mother insists on the supremacy of willpower to conquer dementia.  Or Varun describes his happiness moving online. Or Saraswathy Subramoney talks of doctors who acted arrogant and did not give a diagnosis. Or Vidya describes a family unprepared for dementia care. Or Sarla describes the intense conflict within the family regarding caregiving for an Alzheimer’s patient.

These openings of the heart help us appreciate the range of challenges. I hope they reduce the critical voice around us, and help people see that caregivers need support. Every interview where someone opens up the heart and tells us of his/ her pain is a gift to other caregivers, who will understand that they are not alone, that they need not hide or feel guilty.

There are glimpses of suggestions and solutions, too, the sort of sharing that helps people improve situations. Ranganath Subramoney’s interview describes how a family has managed to coordinate care by taking turns and using available facilities in a creative combination. Another caregiver shares tips on supporting dementia caregivers. Volunteers share their experiences on topics such as how to take a patient for outings, and how day care centres <help dementia patients.

Imagine an environment where caregivers openly talk of their problems and share tips on how to handle them, without defensiveness and fear of criticism. An environment where caregivers are respected for what they do. Where people admit that this work is not easy, and stop this whole guilt trap.

The only way this can happen is if we all see how necessary this is, and how much pain it would save to everyone around. As Ekta Hattangady, thrust into a caregiver role at a tender age of 15, says while concluding her interview:

My parting advice would be just let people in…share your thoughts more…and you will find you can touch the lives of others like you. There is no better way to heal, than to help someone else heal.

Which is why I blog and hope others will, too.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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