Listening to caregivers, respecting them, supporting them

Years ago, when I was still a newbie caregiver and very overwhelmed, a friend/ colleague made the mistake of calling me up and asking me how things were. He vaguely knew of my mother’s issues and my problems of coping, and I therefore (I’ve always been naïve) took his question to be a genuine one, and proceeded with the answer. If a squirm can be seen over a phone line, well, that explains what I perceived, but I was desperate, and here was a listener…

Or was he?

A few minutes into it, he said, (I paraphrase and abbreviate, but you’ll get the drift) “Yes, well, sorry, hmm, ya, okay, so, must be bad, huh, hmmm, yaa, so, what else is going on? Let’s talk of something hmmm, ya, well, like, well positive…so how’re things…what else…”

Utter fool that I was, I answered, “There is nothing else.” Then it registered on my slow brain that he hadn’t wanted any of this rant. He’d probably expected me to be “positive.” He’d probably just wanted a couple of good, positive sentences from me before he went on to whatever else he had called for.

A full-speed train takes a few minutes to stop after the brakes are applied; I would probably have tapered off in about five sentences but by that time he had managed to sign off the conversation anyway.

I felt bewildered and also let down. I may not have minded had he not asked at all, but asking me and then not listening…

He never called again. I don’t know whether he took a conscious decision about it; it was probably just a discomfort he felt when he thought of me, something that made him choose to make other calls instead. He probably forgot the incident.

This incident happened almost nine years ago. As far as I was concerned, I was not asking him for solutions, or even sympathy. All I did was narrate my situation in response to a question. I may have come around to the point of uttering “positive” statements that society expects, but he shut me out before that.

Overall, this was just one of the early incidents that made me start understanding how isolating caregiving could be. It is through stuff like this that I began to realize that if I talked about the realities of my life, people switched off or decided to avoid me. If I wanted company, I had to pretend my life was very different.

I often get to meet other caregivers now, and I want to give them what I did not get from that ex-colleague. Respect. Willingness to listen.

I can’t claim that persons listening to me sense my willingness to listen, so all I can say is, I try. It is the least I can do. Sometimes, my listening helps people open up. Just the act of my listening is support to some persons.

A few days ago, a caregiver called me. This caregiver, I’ll call her Vee, sounded really “down” (she is often bubbly with energy). Though her dejection was obvious, for several minutes she basically repeated facts I already knew — her “normal” range of problems. But as I know how energetic Vee usually is, and her tone was so different, I felt there was more to it, stuff she wasn’t yet able to articulate. So I just listened, didn’t ask anything. Didn’t expect anything. Just stayed there with her, phone clutched.

Around ten minutes later (or that is what it seemed to me) Vee said, “the reason I am remembering all this today is,” and with that, she told me the recent incident that had made her emotions slump. It was a horrifically stressing event.

I couldn’t think of anything to say, except, “I can’t even begin to imagine such a problem.” I made no suggestions, uttered no trite stuff like “it will improve” or “don’t worry, things will sort out.” As she talked, I only said a few words, asked a few questions that flowed in with what she was telling me. If we’d been face-to-face, I may not have needed to say anything, but over phone, I didn’t know how else to let her know that I was there with her, attentive, open, hearing every word.

A while later, her tone got energetic, her dejection now replaced by rage.

Around an hour after she had started, the rage changed to a simmer and then cooled. Calmer now, she thanked me. For what, I asked.

For listening, she said. I needed to vent.

She said she would call later, after breakfast.

Vee’s next call was very different. This time, she sounded part-energetic, part-contemplative. First she wondered whether she had overreacted, whether she was incompetent. I discussed the sheer magnitude of her current problems and told her I thought she was courageous and had a lot of resilience. Her problems were unusually challenging, a complex bundle. I reiterated that I could not even imagine coping with such problems (a truth, sincerely said) and that I could not in any way claim I understood the emotional state she must be in, but we could talk.

Then Vee started telling me what she thought she should do and wanted my opinion and suggestions. I gave her my perspective and ideas. She talked, I listened, and I talked and she listened. Again, she thanked me for having listened to her earlier, and said she had needed to do that venting.

I remembered, as I always do, that man who had not listened to me nine years ago, and I told Vee that I understand.

Listening openly —-without switching off, or judging, or dismissing, or problem solving —-is not a skill we are taught. Nor do most of us think of it as important; we are more keen to solve problems, give advice, all that. The more competent we are, the faster we dole out our solutions and wisdom.

I don’t think I would have ever understood how important listening is, if I had not found how scarce true listeners were when I wanted to talk about my caregiving situation.

Sometimes caregivers tell me (when they talk of volunteers who are doing their best to help)–They mean well, but they just don’t understand what it is to be a caregiver.

But here’s the funny part: I also meet well-meaning, deeply committed volunteers who are dejected and say: We tell caregivers what to do but they are not willing to do it. They don’t seem to care. They want miracles but won’t do what we tell them. They don’t listen to us.

In fact, some volunteers are so frustrated they need to be consoled that they are doing useful work.

For me, every time I hear a different caregiver I am reminded of an infinite variety in the challenges people face, and how they cope. I’m always amazed by everything new I hear. And listening carefully makes it easier for me to offer suggestions that I think could be relevant in their context.

That said, though, it is the caregiver who faces the situation and knows the shades of complexity around it. So if a caregiver chooses to ignore a suggestion I make, or if the caregiver does something quite the opposite, well, sure, I don’t get disheartened. I accept that the caregiver knows the ground reality and it is the caregiver’s prerogative to decide what to do or not do. I only try to understand the caregiver’s choice better, so I get more insight about what happens.

Perhaps I choose this approach because I am a caregiver myself, and I have ignored some advice given to me when I felt the advisor did not understand or if someone else’s advice seemed a better fit.

As a caregiver, I have wanted to be heard, respected, and understood. Sometimes, I just needed to vent. If I felt someone was so eager to advice that he or she was not listening, only keeping quiet out of “manners” (and sometimes not even keeping quiet), I have, frankly, found it difficult to be attentive about the advice the person gave me. I have also found it difficult to evaluate advice if person proffering the advice sounded condescending or preachy, or stated that I lacked creativity, or was “negative”, or treated me as a “case study “and not a person. When persons later asked me how I had implemented their advice, and if they acted superior (as if expecting me to “report” to them) I have been put off. After all, a suggestion is a suggestion, and an advice is an advice; it is for me to see if it truly fits my situation.

Howsoever well I explain something, an entire complex situation cannot be conveyed completely using mere words and in a few sentences. And if the person is not even listening, well, how relevant can their advice be?

When I am trying, as a volunteer, to help other caregivers, I always remember my own experiences. If caregivers want to vent, that is fine, I am there to listen. If they don’t want suggestions, that is fine, and if they hear suggestions and forget or ignore them, that is fine, too.

And all I can tell the disheartened volunteers and others who try to support caregivers is, listening is the first and most important part of support. It is the foundation of communication and building trust. Listening allows the caregivers to reach a state where they can ask questions. It not just provides information, it also establishes trust. By listening, we show openness and respect.

Caregivers usually face overwhelming situations and need some time and space to unwind and explain it all and ask questions. It is not easy for caregivers to explain a very complex situation in a compact way, and they often have to simplify what they say, or leave some things unsaid because of privacy concerns. On top of it, if volunteers are so eager to advise that they switch off because they are framing the answers in their mind, the chance of finding relevant solutions reduces further. And caregivers, who often sense this disinterest and distance, taper off explanations and don’t feel confident about any suggestion they get.

I think we all need to respect the competence and commitment of caregivers who typically handle so much stress and work for so many hours a day. Let us respect that caregivers can evaluate what they hear, and if a caregiver discards advice, let us not assume that caregivers somehow do not want answers or solutions. Or that they are not “interested.” Just because they discard a solution, we cannot say that caregivers don’t want solutions; we can only say, they did not find the offered solution useful. When caregivers ignore a suggestion we considered good, let us examine our way of listening, our way of advising, our way of earning the confidence of the caregiver. Our way of being useful.

And even with all that, ultimately advice is only advice; the person handling the situation is the one to decide. Persons advising them do not live in their shoes….

But listening… that is a good first step for everyone concerned.

Perhaps even volunteers need counselors who listen to them vent 🙂

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

10 Responses to Listening to caregivers, respecting them, supporting them

  1. Shashie says:

    Hi Swapna, this is just so much on target. Just great!! And what I really liked is that caregivers DO NOT want to hear trite phrases such as those you quoted “it will improve” or “don’t worry, things will sort out.” Nothing gets sorted, in the long-run it is just going to reach entropy. I start getting really impatient when I hear people say these things to me, and am eager to switch the conversation off or to a nice discussion on TV serials.

  2. Anuja says:

    Till yesterday I was at the listening end and used to exchange couple of soothing words with others. But today I became a care giver, this sudden change caught me unaware, am struggling to build myself as a care giver. your experiences are truly interesting and motivating. I wish to join the care givers’ association if there is any.

  3. Pingback: Listening to caregivers, respecting them, supporting them: a follow-up post « Swapna writes…

  4. Julie L Getman says:

    Hi Swapna, I love your blog. It eloquently expresses the issues I am facing with my mom who has dementia and is now bedridden. I just searched in google: ‘elderly bedridden’ and your beautiful blog came up. The reason I googled this is because my mom being completely bedridden (coming home from the hospital in a ‘gurney van,’ her stretcher inside a van) made me think that her life is over but at the same time she is vital still. She sings songs with me, she talks all the time (her language completely intact), she expresses her preferences. So I felt a dissonance between thinking that because she is bedridden her life is ending and what I see when I look at her which is her usual beautiful, talkative self (except with paranoia and occasionally psychosis thrown in).

    Your many topics are so interesting and I can relate so well to what you are saying.
    Thank you!

  5. Julie says:

    Thank you for your kind and insightful posts.

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