Listening to caregivers, respecting them, supporting them: a follow-up post

Some weeks ago, I wrote a post on non-judgmental listening being a form of support ( Listening to caregivers, respecting them, supporting them), and I was foolish enough to say I’ll do a follow-up post to share whatever feedback I’d got/ any additional thoughts, so here it is, a post to tick one more item on the three-mile long disaster called my to-do list.

Through the “listening” post, I shared my experiences and perspective as a dementia caregiver as well as a volunteer helping other dementia caregivers. I wanted to know how other caregivers felt about what I’d written–do they agree or do they have a different view? I wanted to share my thoughts and opinions with concerned non-caregivers (friends, colleagues, volunteers) and get their perspective too. So I asked for feedback on the post in various forums where members included caregivers and volunteers.

Most of us, when we read something, do not leave any comments, leaving the writer unaware of our reaction. Did we agree? Disagree? Did we benefit from what was said, or did we find it a boring ho-hum rehash of old stuff? Did any of it matter at all? This silence of the readers means that the writer has no input to consider, and refine the next article. Then we read another boring article by the same writer and say, hey, she’s still a bad writer 😦

I get feedback sometimes–as comments on the blog, through the contact form, and emails sent directly to me–and I learn from every person who writes in. When I invited comments on the above-referred post, I was hoping to get more data.

I can probably divide the feedback I got in two broad categories (1) concerned persons who are non-caregivers and (2) caregivers (current and ex-caregivers) .

The concerned non-caregivers first: A lady volunteer wrote (paraphrased) to say that she’s experienced those moments of insight when listening, when the caregiver says something that clicks in place for her , and that such moments made her work worthwhile.

I could relate to her experience, and was glad to know she had connected with the article, and valued listening.

Unfortunately, I did not get more feedback, so I have no idea what other concerned non- caregivers felt about the views I’d expressed.Maybe they did not feel anything strongly enough to write in.

The caregivers were far more vocal. Many wrote in to say that they fully agreed with all I’d said, that I’d expressed their thoughts for them. But they also wrote more stuff…

…stuff about what more they (the caregivers) should do, or already try to do to be heard by others…

I got my first caregiver feedback at the stage when my blog entry was still an unpublished draft. Because my blog entry described an interaction with one caregiver, I had sent this caregiver the relevant section of the draft, and she called back to consent to its inclusion in my blog. Then she added (in a worried voice), “I hadn’t realized that I was being repetitive.” I assured it was not a problem, but she said, “You may have listened, but I can’t expect others to listen if I talk like that. I must be alert about it when I call up people.”

I was taken aback. I explained that I was writing the blog to let people know that caregivers needed unconditional listening and I was not writing it to tell caregivers to change their way of talking. I reiterated to her that I didn’t think it fair to expect a caregiver to be very measured and careful on days she was so overwhelmed that she needed to just talk.

But even after the blog entry went live, many of the comments I got from caregivers were precisely about that—about how they must tune their way of talking so that others will listen. About how they must choose what to talk about, whom to talk to, when to talk about it, what to be careful of. Some shared anecdotes.

Frankly, I was somewhat upset with myself.

I didn’t think the caregivers should be burdened with having to change the way they talk, in addition to all the rest they already do. My intention was to share my observations with persons interacting with caregivers, to say that, listening attentively and without judgment is itself support, or at least the beginning of, and an essential condition for support. My suggestion was that people should listen to caregivers rather than wait for gaps when the caregiver pauses to breathe, so as to start pouring out comments or consolation or advice. The “All will be well, so why talk of negative things” type of stuff that doesn’t actually either console or help…

But it seems that the effect of my entry was to make caregivers introspect. I had not managed to reach out to non-caregivers or involve them enough to write back….

To confess, I’m never really sure what this support business actually is all about. Or counseling, for that matter.

What I’ve found often is that giving “support” (by non-caregivers) is sometimes the same as giving advice or preaching without understanding the ground reality. Worse, under the umbrella of support, some people even list more things caregivers should do for the patient, or for themselves, without adding practical suggestions on how the caregivers can get the required time/ energy/ space/ money to squeeze an additional task (or “relaxation”) into the day. Support, in effect, becomes another forum for caregivers to feel they must do more. Counterproductive, eh?

The lack of listening means outsiders don’t actually understand what care involves. So (and this what makes it weird), in addition to caring for the patients, caregivers have to do “PR” because people think they are not doing enough, and the caregivers have to either put up with the veiled (and sometimes blatant) criticism, or take active steps like inviting people home so that these “supporters” can satisfy themselves that the caregivers are doing their job properly. As if caregivers didn’t have enough on their plate 😦

Definitely, I had not written the post to give caregivers any suggestions on what to change. So when I got those responses from caregivers, my first reaction was a sense of worry, thinking that I might have sounded preachy and prescriptive. I read my post again, and felt relieved when I realized that the caregivers’ response was driven more by memories and thoughts my post had triggered–they remembered incidents and experiences of trying to communicate to outsiders, they thought of things they had done to be heard better, and of what else they could do. And I told myself, okay, if my writing has helped some caregivers examine their way of sharing their problems, and if that will get them more listeners, it’s not too bad an outcome (even if making suggestions to caregivers was not what I had set out to do).

And then I realized the reason why caregivers tend to read and start pondering, remembering, considering what they have done and experienced, and what they may want to do: Caregivers are major stakeholders in this caregiving business. Every idea, every suggestion that can help them manage their care better, get them more support and acceptance, and reduce their stress directly improves their quality of life.

It is somewhat different for the concerned non-caregivers.

Many concerned persons care for, and want to help caregivers. They are committed, yes, but they are not adversely and personally impacted if they are ineffective in listening and supporting. They don’t have a direct stake, even if they are emotionally deeply committed to supporting caregivers.

Look at it this way: persons who are ineffective in supporting a caregiver may feel bad that they could not help, but the bad feeling doesn’t stress out their life so drastically as to keep them edgy or isolated; they do not pay a major emotional or physical price for being ineffective in supporting someone. They can always tell themselves they’ll do a better job with the next caregiver.

A volunteer (whose job description includes supporting caregivers) may not even know she was ineffective because most caregivers don’t tell her that. The caregivers will possibly talk less to her the next time they meet her, or they may withdraw fully. The volunteer may not realize this is because she was ineffective in supporting; she may think the caregiver has no more problems, or even that the caregiver is too proud or obstinate to take help of professionals. And even if the volunteer suspects that she didn’t quite manage to help, she’ll chalk it to “I’m just learning,” or “I tried my best.” If she feels bad and tells peers and friends, they will console her by pointing out that social work is a noble task and that she should not be discouraged–everyone is “human”. In terms of job performance, that is usually measured by the number of caregivers she “counseled” and the hours spent doing that, rather than whether they benefitted and felt better after the sessions.

What I am saying is, howsoever much non-caregivers may be concerned, they usually have much less at stake. Only truly committed persons would seek more information about how to support caregivers or be vigilant about how effective they are or ask caregivers for feedback on how effective their support was.

But for caregivers, the situation is up close, unavoidable, whether they like it or not. It’s their life.

Caregivers want to be heard, understood, supported, and often suffer when that does not happen. They are therefore more eager, more receptive, more introspective, more willing to change–they want the benefits of being heard and understood and supported.

I guess (it follows therefore) that, because caregivers are stakeholders in caregiving, they are also stakeholders in systems intended to support caregiving. Caregiver involvement can be (should be?) an important component in the creation of caregiver support mechanisms, of a body of knowledge that can help, of communities and facilities, and such stuff. Their need and drive may add valuable perspective and even expedite the work. I am not sure, though, that the organizations that work for caregiver welfare see caregivers as stakeholders in the creation of caregiver support systems, or that these organizations include mechanisms to keep caregivers involved and to incorporate their views and voices and feedback, especially given that caregivers cannot always be available; caregivers are busy caregiving, see, and also juggling bunches of other stuff and trying to prevent their own stress, and they cannot “lobby” for inclusion.

And there’s another thought, to what extent can caregivers be the drivers of their own support mechanisms? They are stakeholders, they know stuff, but can they get together, start initiatives, follow them through? Last week I’d written about caregivers forming their own support groups to pool experiences and tips.(Online caregiver communities: supporting each other How does the caregiver get the time, the energy for all of this?

I started off this discussion with the premise that caregivers need support because they are often overwhelmed, and yet there’s also this aspect that well-designed, effective, sensitive mechanisms to support caregivers can only be possible if caregivers are included the process, where they have been heard or understood, and their data incorporated.

This is all so confusing. I’d love to hear from you, but this time I’m not promising any follow-up post.

Earlier posts referred to above:

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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.

6 Responses to Listening to caregivers, respecting them, supporting them: a follow-up post

  1. Kalpana malani says:

    Could it be that the best support for caregivers have to come from other caregivers ?- after all only they would be able to listen with some degree of empathy unless non caregivers are extremely perceptive and tuned in.In my own experience I have had the best, most practical advice from other caregivers who have given me absolute non judgemental support. Maybe we should work out our own support group on these lines with non caregivers who would learn to really LISTEN ( sorry for the caps). I feel the media has not helped with their highlighting of neglected senior citizens which give the impression to their readers that by and large most families are neglecting their parents and the media and NGOs are like white knights charging in to care for them. This relentless media coverage would obviously colour people’s impression of caregivers.

    • swapnawrites says:

      I have felt that media bias myself, and also had people “quoting” it to me to “prove” that children neglect parents, and that I must therefore be doing so, or would do so if people did not keep reminding me and lecturing me to keep me on the right path of being a good person. Guilty until proven otherwise, is what many people assume when it comes to children caring for their parents. I wonder how one changes that mindset; it is such a stressor.

      And I agree with you that caregivers are best equipped to provide non-judgmental listening and help, and I wonder whether others can better help by facilitating caregivers to help each other…but for that, they will need to accept that caregivers are, by and large, competent and well-meaning persons who just need some support…

  2. Linda says:

    I found the best help by attending a small class for caregivers with a focus on trying to care for ourselves. We all understood each other so well, despite our different situations. After the class ended, we continued to meet and discuss things. My father, who had dementia, has recently died, so I don’t feel comfortable going any more.

    Your blog also helped me to feel less alone. I felt as if you were walking ahead of me in the dark, carrying a lamp. Thank you for reaching out, and everything you do.

    • swapnawrites says:

      Thanks for sharing, Linda, and so happy to hear my blog helped. I’ve often wondered about the awkwardness that ex-caregivers must feel, where on one hand they understand and are concerned, but on the other, they feel they don’t fit…Given how much valuable information caregivers gather, there surely must be a better way for them to remain involved to the extent they want, without feeling uncomfortable…

  3. Supriya dutt says:

    Yes I think the best support does come from fellow caregivers. Not because others cannot or do not want to support. Its probably because they do not understand the language we caregivers speak… Our society unfortunately is not aware, not literate about caregiving. The other family members especially siblings are scared of what they see and hear and are grateful its not them (who is the caregiver). And as long as its someone else doing it , its someone else’s problem….

    Perhaps as Swapna has taken upon herself it is us caregivers who can increase the awareness around us.

    Thanks Swapna for all the support you have given me and other caregivers. Hope we can do a little for you too.

    Cheers

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