Caregivers are defined in the dictionary as “a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.” But after this month’s roundtables, HAchats and countless stories shared in the Blog Carnival — we all know this is definition misses SO much of what it really means to be a caregiver.
This month has really brought to light the different lives that caregivers lead. Together we uncovered: the hurdles, the rewards, and the true reality of being a caregiver or parent advocate. In this month’s final HAchat, we wrap up the #A4Amonth discussion, and looked back at the lessons we learned during this month.
A New Perspective
A different perspective was in the spotlight this month. Those who normally focus on the patient perspective may not realize what it’s like to be a caregiver or parent working in the advocacy space. And, because it’s difficult topic, many may not realize the toll that a loved one’s illness has on the caregiver. But we are all in this together – working toward the same goals of improving people’s lives and raising awareness. This is why it’s so important to bring Health Activist patients and Health Activist carers together: to learn from both sides about the effect of living with an illness.
“Serenebutterfly: As a patient it has made me more aware of the impact of illness on parents and caregivers – made me appreciate them even more!”
Caregiving is stressful. And advocating is, too.
Actually, the word “stressful” does not begin to cover it. When with the one they care for, a caregiver can be constantly worried about what they are doing. Questions of self-doubt arise: Could I be doing something differently? Am I doing this right? Even the thought of teaching your loved one how to live everyday life can be exhausting and overwhelming. Advocating online is not a simple task either! It can also be very stressful and difficult to discuss the situation you are in.
“KimmieCollas: sometimes it can be frustrating and feel like we’re not getting anywhere because we don’t get feedback on everything we do”
“Nursesantos: Many find it difficult to address that we all die. We can advocate so that peace & dignity prevail during that transition. “
“FeliciaFibro: hard to find the balance between motivating/empowering a reader & making them feel guilty for not having done it”
“CaregiverSN: For many, being an advocate makes them feel like they can’t talk about their own experience– if it’s causing them pain, loneliness”
“EncompassSenior T1.2: Tough to discuss bad things that could happen with ones illness. Something nobody really wants to discuss.”
These common challenges only reinforce how important the conversations we’re having truly are. Working toward awareness is a worthy goal for patients and carers alike.
Reading Success Stories and Tips Can Give Hope to Others
Advocating and writing about your loved one can open up so many doors. You’re not only helping yourself as a caregiver, but you’re also able to enrich your life as a person. According to the Health Activists that participated: success stories are the best received and the most rewarding to read. By sharing successes, advocates give others hope and address real issues — therefore creating a dynamic community.
“Nursesantos: Stories about one person randomly helping another, or who’ve been there through thick & thin. Gives all of us hope.”
“Serenebutterfly: Always great to hear stories of people achieving something big despite chronic illness so that we can all be inspired”
Right now, over Facebook or Twitter. (Anyone catch my Beatles reference?) But really, there are so many ways to connect with other advocates. We just need to share how to do that. In the chat there was a mutual understanding that Facebook and Twitter are the most popular social media outlets to directly connect with others. They offer a place where people already are and where people can share easily – which makes for a great environment for coming together.
“Serenebutterfly: Think Twitter and Facebook are the perfect places to come together – easy to use and can use hashtags to easily find information”
“EncompassSenior: Twitter and Facebook. As well as different forums that may be out there.”
“serenebutterfly: Also using specific organizations concerning that particular illness, non-profits and charity websites and forums”
Finally, advocating for your community as a patient is kind of like being a caregiver in a lot of ways. It is a journey. For an advocate, it is a journey through learning how to do their best as a carer and come to express how they feel about their loved ones illness. The process may not be perfect, but communicating and reaching out to others is key.
“KimmieCollas : communicate, communicate, communicate – sometimes you have to find the right WAY to say it so they can “hear” you”
And, though Advocating for Another Month here at WEGO Health has come to a close – we will strive to always include this important group in the conversations we have about Health Activism (and hope you do, too!). Next month we’ll get back to what keeps us all going for Health Activist Inspiration month.