Introducing Honest Answers

Many matters related to caregiving are taboo. While caregivers may feel comfortable discussing the physical and logistical aspects of providing care, when it comes to more complex topics — like feelings of guilt and resentment, financial challenges, or even the effect of an illness on a loved one’s appearance and self-esteem — confiding in others is much harder. These types of difficult conversations are a big driver for our first product at Caregiver Support Technologies, Blue.

Since founding this company, I’ve had the privilege to speak to many people about their experiences with caregiving. I have been humbled not only by the stories I’ve heard, but also by the willingness of people to open up to me in ways they don’t with others — not even their closest friends and family members. Whenever I give a talk or write an article, someone reaches out to privately share the difficulty of their experience with me. One person confided about the embarrassment they experienced as a patient; another about the feelings of awkwardness they overcame to help their father shower; and yet another about the guilt they feel knowing they just can’t give their healthy children the same attention they give to their sick kid. These very personal conversations, and many more, always come with an implicit trust and an unspoken agreement about confidentiality.

As frequently as I hear these things, I know that an implicit guarantee is not enough for everybody. And, as much as I’d love to, there’s no way for me to listen to every story people wish to share about the endless challenges around caregiving. But what if there were a way? What if Caregiver Support Technologies could provide a scalable, anonymous forum to help people share their more taboo stories — and, in doing so, to start breaking through that taboo entirely?

This is the simple but, I hope, powerful idea behind Honest Answers. With this series, we will conduct anonymous, or at least explicitly confidential,research to gain new and unique perspectives into the caregiving experience. The research, which will mostly comprise fully anonymous surveys, will provide insight into how different people have felt, acted, and reacted when confronted with everyday caregiving scenarios. Importantly, Honest Answers will look for the perspectives of not only patients and caregivers, but also many others: neighbours, colleagues, employers, professionals, and of course, friends and family. In doing so, this series will provide an open forum for people to share their regrets, frustrations, and other struggles in a way that shows others they are not alone.

We decided to begin by reaching out to those in a position most of us are familiar with, and one that is paramount to our company’s mission: supporters of caregivers.

Becoming a Supporter

I shared this first survey with members of my network, some of whom shared it further. Ultimately, it reached 25 respondents. The purpose of this survey was to collect anecdotes about the experience of finding out that another individual — whether a friend, family member, or more casual companion — has taken on the role of family caregiver for a loved one.

There were several different types of relationships represented in the responses: Some supporters reported having a parent who was a caregiver, some had another family member in mind, and some were thinking of a friend or colleague. Respondents answered 6 demographic-focused multiple choice questions and 4 more qualitative questions about their experiences. A more specific breakdown and analysis of the responses can be found at the end of this article, where I also detail the limitations of the study.

The themes of regret, confusion, helplessness, sadness, and all of the other emotions you’d expect came through loud and clear across all responses, but I’d like to share a few stories that really stuck out to me. These anecdotes speak to larger themes that I’ve encountered repeatedly in my discussions with caregivers, supporters, and others who have confided in me.

Story 1: In the Dark

Imagine living far from home and finding out, second hand, that your friend’s child has been diagnosed with a potentially terminal condition. What would you do? This respondent, in the midst of feeling “surprised, shocked, [and] saddened,” did what many others might have done in a similar situation; namely, they did some research to learn more about the illness, and they also sent a generous donation when the family was in need. There wasn’t much more this individual could have done to provide support in this scenario. What struck me about this story, however, was that the respondent never really found out what happened. As this individual explained:

“[I] would have liked to know how it went? If she still needs help? I know my friend’s daughter survived but don’t know her well enough to know her health status now (to know if she’s doing okay or not).”

To me, this speaks to part of what makes people so uneasy about sending money in the first place: The feeling of funding something ambiguous is unsettling. Platforms like GoFundMe seem to have more success when there is a well defined need, like a surgery or an expensive drug. By contrast, the incidental costs that accompany chronic caregiving scenarios are harder to articulate, meaning fewer people are willing to respond as generously as this respondent did.

Story 2: A Changed Relationship

Only one respondent reflected on the experience of having a spouse who was a caregiver, and this individual provided a unique perspective. When the respondent’s spouse was forced to provide care for a sibling, the respondent felt helpless — but not for a lack of ideas, energy, or access to resources. Instead, the respondent questioned whether it was even appropriate for them to offer an opinion, let alone for them to actively intervene. With this in mind, they opted to wait and see what would be asked of them. In the end, this created a sense of discomfort, ultimately causing the couple’s future together to feel uncertain. The respondent also reflected:

“Resentment is something that may sound taboo, but [it] is a very real part of this experience.”

It’s not clear who resented whom, but this person has keyed into a prevalent effect of caregiving on relationships: namely, its often-destructive nature. Marriages often fall on hard times when these issues arise, particularly when one spouse cares for another — a scenario that is estimated to lead to divorce rates reaching 75%.

Story 3: Slow and Inevitable

In the final story, the respondent’s grandmother slowly lost her cognitive function and physical wellbeing to dementia — a scenario that I, and many others, can personally relate to.

“It was an ongoing conversation in the family, so it was not surprising. The original diagnosis of dementia was tough to come to terms with, but again, not shocking. The more upsetting news was the additional cancer diagnosis that followed.”

Cancer certainly exacerbated the family’s already tremendous sadness, but, thankfully, they had an edge: The grandmother had five children to share the load of caregiving. Two of them handled most of the finances and admin, while the other three stepped up more with acts of physical service. The respondent expressed that they wished they’d had a better way to organize the many different types of support being contributed, however — from money, to time, to management of the patient’s medical needs — so that they could account for and celebrate the contributions of those putting in effort.

What We Can Learn From These Stories

These are just a few of the many stories respondents shared about their experiences as supporters of caregivers. Across all of the responses to this survey, there was one consistent takeaway: “The caregiver needed more support than they got, but I don’t know how I could have done more.”

People lack many things when trying to support a caregiver. Some of these, like time, money, or even physical access, are obvious. Others, however, are more nuanced. Supporters need permission to help and ways to stay connected, while caregivers need to feel like they have permission to ask for support. To do so, they must understand the key takeaways of this survey: That people not only want to help — they want to help more, and they want to act earlier.

Breaking Down the Data: Analysis and Limitations

Limitations

I’d like to begin by acknowledging the significant limitations of this survey and, consequently, the limits on how much we can extrapolate from the data collected. Because this was our first survey, it had several limitations. The two most significant ones were:

Small Sample Size

We don’t have the reach (yet) to draw a large number of survey respondents, which is why we began with an anecdotal approach. At 25 participants, we collected a number of unique stories, but our results boast very little statistical power.

Skewed Population

This survey was largely pushed through my network. Again, I am forced to acknowledge my privilege here: It is entirely possible, perhaps likely, that most participants are well educated and sit on the higher end of the socioeconomic spectrum.

Study Demographics

Even with these limitations, we managed to get a good spread of participants. Here is the basic demographic information we collected:

• Of the 25 participants, 12 focused on the caregiving experiences of their own parents (including 1 stepparent), 6 focused on another family member, 6 reported having a friend who was a caregiver, and 1 recounted the experience of having a colleague who was a caregiver.
• All respondents reported that the caregiver in mind was caring for a close family member, such as a parent, child, spouse, or sibling.
• Nearly all of the respondents — 23 out of 25 — found out about the situation directly, having been told by the caregiver or witnessing the progression of the illness themselves.
• When asked, only 9 of the 25 respondents reported having personal experience as a caregiver.

Further Analysis

I was very interested to see how the demographic data would tie in with the long-form answers participants provided to the qualitative questions. The most striking divide between respondents was exposed by a simple question: “Before this experience, had you ever been a family caregiver?”

As noted previously, only 9 people responded “Yes” to this question. Of those 9, most also said that they wouldn’t change how they responded to the other individual’s caregiving scenario. This seems reasonable — in other words, individuals with more caregiving experience felt that they knew how to provide support to others in this role, and acted accordingly.

The thing that leapt off the page, however, was not the answers themselves, but instead how the questions were answered: People who had been caregivers before were far less verbose. Experienced caregivers used only 27.5 words to answer the 4 long-form questions. Their inexperienced counterparts, on the other hand, used a whopping 80.3 words — 2.9 times as many! One might have expected those with more knowledge to offer more insight, but the opposite was true.

The limitations of the survey prevent us from digging any deeper into this intriguing piece of data, and its confidential nature makes it impossible for me to follow up with respondents. Still, I can offer a few possible interpretations:

1. Because they knew what to do, experienced caregivers were efficient and effective when helping another person. From their perspective, there wasn’t much to say or recount about this experience.
2. On the other end of the spectrum, perhaps people who lacked caregiving experience felt the need to describe what happened in order to better understand and process the events.
3. It’s also possible that experienced caregivers felt more jaded due to their own experience, the result being that they didn’t want to elaborate as much.

Figuring which of these interpretations is most accurate, if any, is impossible with our limitations — however, the striking difference in response length is surely worthy of further investigation. It’s my sincere hope that as we grow our community, Honest Answers will serve as a tool to open up new streams of dialogue in a way that helps normalize even the most taboo topics in care. Be sure to stay tuned for our next post in this series.