Dementia: the journey of caring continues

September 2013, the month earmarked as World Alzheimer’s Month with the theme, “A Journey of Caring” has come to a close, but as caregivers know, the journey of caring continues at its 36-hours-a-day pace, day after day, month after month, year after year. As media moves over to other causes, and weary volunteers rest their hoarse throats and tired legs, let’s pause to think how deep and lasting the impact of those awareness drives and calls for supportive policies will prove to be.

Focused efforts to bring dementia and care into the limelight help, of course. Reports like the World Alzheimer’s Report 2013 may nudge some policy makers to pay more importance to dementia. Awareness talks have been held, and maybe some person will get diagnosed earlier because of them, or some relatives and friends will feel more deeply for the persons with dementia and their caregivers and extend support. Newspaper reports include lists of symptoms and names of doctors and organizations, and maybe some persons will now know whom to approach.

How long, though, does the impact of such campaigns last in the public mind? Every day is some sort of World Day, every month is some sort of World Month. Will alertness and awareness continue without sustained effort and momentum?

See, here’s the thing: if we want a paradigm shift in the status of dementia and caregiving in India, more people must understand how dementia impacts the person and the family. This understanding forms the base for any support work. Given that most people are not in cities where walks and talks were held, and that even if they were, they did not attend, all they have is a couple of paragraphs on dementia in a newspaper article once a year. Is that enough to give the public a transformative understanding of dementia (do people even read newspapers so carefully)? Will the benefits percolate enough to change the lives of caregivers? Well…

As a caregiver, I often felt isolated and misunderstood, and as a volunteer who helps other caregivers, I find many fellow dementia caregivers in India feel the same. While some lucky caregivers get a supportive environment, the vast majority do not. Here are examples of what many caregivers say about the people around them (relatives and friends and even volunteers and professionals):

  • These people, they’ve never been caregivers, they just don’t understand
  • All that advice is so impractical. It’s obvious they’ve never done any caregiving
  • I went to a doctor and he didn’t know about dementia
  • I won’t talk to volunteers any more. They just give lectures
  • Why don’t people know more? No one should have to face so much ignorance
  • “They” (“Someone”/ “The Government”) should do something about it. How can we handle all this much work without any support?

Yup, it is true that persons who have never been caregivers cannot grasp how tough caregiving is, how heart-breaking, how tiring. They do not know how isolated and unsupported many of us feel. Two paragraphs in a newspaper once a year don’t give a flash of cosmic insight.

I often chat with caregivers who feel more should be done, and even some caregivers who want to do something themselves. They are currently overwhelmed with their caregiving work, but hope to do something later.

But often other things come in the way “later”, when their care responsibilities are over. Burnout, for example. Depression. The need to move on, the expectations of their friends, relatives, and colleagues that they will put away the “negative” thoughts and “be normal.” Or just the deep sorrow associated with even the word, dementia, the face that pops up in the mind, the memories. Sometimes even crippling guilt, though there is no ground for it after such hard work for so many years. Then they also need to renew their careers and make up for the lost years. And they have to take up roles and responsibilities they had suspended–they have to be a parent, spouse, sibling, child. Resume other volunteer work they had committed to. Do that much-neglected health check-up. And they may hesitate to be seen as a dementia caregiver in a society that acknowledges neither dementia nor the role of caregiving. Family members may discourage, saying, why talk about private things? Can’t you let it alone now? They may lack the energy to work around all this or to contribute anonymously…

Some caregivers share, but often in sporadic ways, localized within safe circles of supportive friends and relatives. Sustained effort is difficult to put in. And seeing that the overall momentum is low, others who may have shared also hesitate to step forward.

As caregivers, most of us have felt that only other caregivers can understand our situation. Yet we also expect that somehow, others will start understanding us, and that some “they” should make this shift in understanding possible. But I wonder, how can we expect others to understand if we don’t talk about it? How can people grasp the challenges of caregiving if they have not experienced it and if caregivers don’t speak up and share their stories?

It’s not easy to stand up and share one’s personal experiences of being a caregiver. I know, I have done it–not just in online blogs but in face-to-face sessions with volunteers and while talking to reporters. I’ve done it again and again, and it has never been easy. I find it very hurtful to talk about some things. Sometimes I face scepticism or criticism, and that hurts. Sometimes listeners say I am “negative” without realizing that I don’t actually want to go back to those memories. A doctor once told me (in a workshop) that I was misleading people by describing the challenges of caregiving because taking care of elders was every family’s duty and people should do it without expecting anything from others. Families should not expect or need support, he told me and the audience. So yes, it hurts to talk openly, to admit to past mistakes and problems and emotional conflicts, but not speaking up seems worse because such silence could mean more caregivers will face the sort of problems I faced. And some people do listen, they ask questions, they try and understand, and that makes it worth it. Awareness grows in small steps…

I think that if more caregivers speak up, we may build the momentum needed to spread awareness. We cannot expect non-caregiver volunteers to fully explain what only we caregivers have experienced. We cannot expect others to understand if we have not opened our hearts and tried to make them understand.

One thing I have learned in these past years: there is no “they” who will set things right. We have to be the “they.” We have to say what it is like to be a caregiver.

September is over, the World Alzheimer’s Month is over. But the journey of caring continues day after day and our efforts to spread awareness must also continue.

Are you a caregiver? Have you ever felt people do not understand what it is like to be a caregiver? Maybe you’ve wished somehow that the situation would change, that non-caregivers would understand you better and know how to support you. Maybe you have wondered if you can do something to improve matters. Please use the comments below to write about what would enable caregivers like you to share your experiences, needs, and problems with non-caregivers. Maybe you can thinking of sharing that could be done in small, private circles of persons close to you. Or maybe you have some ideas on what would enable caregivers to share in public. Maybe you have faced some specific problems that stopped you from talking about your experiences. Please write about it below. You don’t need to give your name to add a comment; use your initials or use a pseudonym, whatever you feel comfortable. The comment form will ask for your email id, but the email id will not be visible to those who see your comment.

I’d love to read what you have to say.

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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.

11 Responses to Dementia: the journey of caring continues

  1. Rummuser says:

    I would consider myself lucky on many scores. To start with, my care receiver, my late wife was not an extreme case and was not too difficult to give care to. My family and friend circles were extremely understanding and helped in whatever way they could. On the other hand, when the care receiver was my father, it was a different story on the first part but the second stood firm and today, as I look back I can say that by and large I came out of the experience unscathed.

    As you repeatedly iterate, each case is different and so it is for the care givers as well.

  2. Gowri Manian says:

    That “there is no “they” who will set things right” are golden words! .Unless the non-care giver is passionate about the care giving and the related issues, which are truly diverse, it is not possible for the caregiver to get the support he/she deserves.The so called supportive relatives etc turn critics too when not called for, which is flip side to having support. Our cultural background, with religious beliefs and spiritual values have to be nurtured to make the caregiver look for support within himself/herself.This is the ultimate support one can wish for and which will never fail. At least this is what I do!Looking for information outside and for moral strength inside.

  3. Kalpana Malani says:

    I think ( at least in my case) there were certain stages I went through – I was initially in the “why me” stage – then a sort of acceptance but still a lot of irritation and annoyance at having to miss out on normal stuff – for example we can rarely go out together as a family on holiday. A resentment that there are no old age homes or some kind of respite care for even a few days – then finally it dawns on you that this is how things are and you have to just find the right way yourself – kind of sit down and list all the things and just find the solution. I realised that I’m never going to be perfect but as an imperfect caregiver I get the chance to be content and if I’m happy my mother will also sense it.

    • Thanks for sharing, Kalpana. It’s great that you’ve found a satisfactory pace and approach…so many caregivers struggle to find that balance where they accept the situation and their strengths and limitations and feel content…

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  6. puja says:

    hi ,
    im really glad to find this blog and more than anything ,there is really lack of awareness on psychiatric disorders and not enough carecentres which can treat such patients. they are niche areas and are always difficult to find.
    I need help here : My father is an alcoholic and also sufferes from bi-polar disorder.the de-addiction centres have younger patients who can take care of themselves while undergoing withdrawal and other issues.With my dad ,he needs de-addiction ,but also needs psychiatric help at the same time needs regular physcial examination.Most centres dont have a inbuilt physician who can take care of suddent such requiremnts .Can any place be suggested where he can be specially taken care like his feeding ,we can’t keep him at home becuae he gets agressive and it gets diffcult for us to keep him away from alcohol ,where can i keep watching him,that is feed him
    etc at the same time his blood etc cna be tested on regular basis and can also have a psychiatrist attending to him…pls help

    • Hi Puja, Thanks for sharing your situation, which is very challenging. I really have no idea which rehab/ de-addiction centre would meet your needs. Maybe you can ask senior psychiatrists at any major hospital in your city? Or surf for such facilities and then check them out to see if they meet your need? Also, some of the big cities have NGOs working in the cause of mental health, and they may be able to point you to satisfactory facilities. My overall impression is that even if a centre does not have a 24 hr physician, they should be having nursing staff, tie-ups with doctors on call, ambulances, and arrangements with nearby nursing homes. Of course you will need to be really satisfied with the facility before placing your father in their care. I wish you the very best in your attempts to find solutions for your father’s problem.

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