We’re hosting Roundtable chats every Monday, Wednesday, and Friday at noon Eastern in August. This Monday’s chat focused on the topic of “Advocating for a loved one.” We hope you’ll be able to join one of the chats – you can RSVP here on our Facebook event to see who else will be attending. Here were Monday’s panelists:
Roundtable Recap: Advocating for a Loved One
by Sharifa Simon-Roberts
Continuing in the spirit of this month’s theme, “Advocating for Another,” Monday’s Health Activist Roundtable focused on “Advocating for a Loved One.” Below, is a recap of the discussion which took place among panelists. If you are interested in joining us for one of our roundtables, please visit our Facebook event to RSVP. Here is a list of Monday’s participants:
During Monday’s Health Activist Roundtable, persons who advocate on behalf of a loved member shared their views on their role as advocates for their loved ones. As caregivers, they recognize they can serve as the voice of the patient and it is important to be empowered, have an input, not afraid to ask questions and stand up for the rights of their loved ones.
What ‘Advocating for Loved One’ Means
Kristina: It means taking care of my husband’s medical needs and speaking up on his behalf when he is unable to.
Denise: In addition, it’s being the voice that helps determine what is the best treatment option. You can personalize recommendations and options so it is right for you, family members and your family system. You know your family member’s history better than anyone else. You know what your family member can do and what your family member wants. That’s critical.
Andrea: I think the medical community is certainly more open to this than they have been previously but I think we really have to look at the health advocate as part of that team and we really need to make them feel valued and welcomed. Doctors’ orders are much easier to follow if you get that health advocate on your side.
Kristina: One of the biggest challenges is self-care. I always preach ‘take care of yourself’ but it took me a while to learn. Juggling everything and not forgetting about myself and not losing the focus can be huge challenges.
Andrea: Not everyone agrees with the approach a family might take to facing an illness. To feel like you are facing a health crisis and to deal with personal criticism of how we were handling it hurt a little bit. It isn’t necessarily helpful to the caregiver in the midst of the storm.
Denise: So much changes that self-care seems like a good idea but then how do you actually implement it. I think there is an aspect of guilt that comes in with self-care – how do I take time away when someone needs me. Until you are in that situation it is hard for people to understand how hard that can be to figure it out.
Andrea: I’m going to use a cliché, ‘when life gives you lemons, make lemonade.’ [The experience] gave us a wonderful opportunity as a family to say maybe I could spend a year volunteering with a key cancer organization, which I did but even better we can look back at where we were 8 years ago and say we’ve been able to help countless families who found themselves in this position. We get to tangibly see how our family’s experience has been an encouragement to other families facing the same thing. That’s pretty unique. Not everybody gets that happy ending.
Denise: Parenting teaches you how to love. Caregiving teaches you how to live.
Kristina: When things go right; when I know I have taken at least one care off [my husband’s] mind. Someone has reached out to me and said ‘thank you for sharing your story because now I no longer feel alone.’ Sharing our story and knowing that it helps others, helps me immensely.
Differing Opinions on how to Advocate For Loved One
Kristina: It can be really difficult. I have always been very outspoken when I see something I think needs to change. I know not everybody will agree with the things I do and the way I do things.
Andrea: My role within this situation was to ensure I could do everything within my power to make sure my husband was there to walk our daughters down the aisle at their weddings. I personalized it because I needed everyone to view him as a human being and not a statistic. It succinctly defined what my role was. It pretty much kept the negative comments at bay after that.
Denise: I had to come to terms with my role was offering suggestions to [my dad], sharing the information and research I had discovered and letting him decide what he wanted to do. Whatever his answer was, I accepted it and moved on. That was very important to me. That way we stay on the same team.
Kristina: Sometimes, we have to take a step back and say while we are the ones advocating for our loved ones we can not take their whole say away. There are a lot of choices still that need to be made by the person themselves.
How to Decide What and How Much to Share
Kristina: It was always very important to talk to my husband because I knew mental illness has a lot of stigma attached to it and I needed to know what was he would be comfortable with me sharing with a wider audience. Those discussions took and take place regularly because things change. There always has to be this communication between us so I don’t overshare.
Denise: My bloggers bolster that as well. Some times caregivers log under an anonymous name, not necessarily share all of their information and what I find is, the discomfort eases over time as they get used to writing and the support they receive. Those first few blog posts are so nerve-wracking. Ultimately, people come to the place where they say it is good to talk about this because it does help someone else.
Andrea: [My husband and I] talk to our children to make sure. We never use their actual names. As long as there is an honest conversation when it can happen with the people you’re talking about, I think it’s fine. Where there is a great opportunity is for the situation Kristina is in with mental illness, with such a stigma attached. For her to lift the veil and talk about that in a meaningful way that people can connect with it really offers a way to raise awareness.
Advice For Someone Just Starting To Advocate
Denise: Give yourself time to sit with a blog post and get comfortable with it. Once you get used to it, it’s almost as though you feel you are out there in the world naked, you’ve just completely exposed yourself. It becomes this cathartic experience that you just write about without judgment of what can happen. It can be a truly valuable coping mechanism during a really tough time.
Kristina: There is no wrong way to do this. Find what you are comfortable with, what works for you, for the person you are advocating for and share you story. It is your story. Nobody can share your story the way you can.
Andrea: People have to feel comfortable having [the blog] feel like them. I think it feels a little more authentic if it reflects how you would be in real life.
Denise: Don’t minimize your story. It is important to you. That’s what matters. It’s an incredible record of what happened to you and someone who is important to you. I would encourage you to use video to journal about the experience. Think about other ways to capture what the moments and experiences are like because they will really become treasures for you.
Programs, Tools and Resources for Caregivers
Denise: I’m hoping to create a way for family caregivers to connect with each other while they are waiting – for news, diagnosis, in the hospital, in the doctor’s office. There is all of this time you spend waiting alone. So we would like to have a mobile app which connects all these family caregivers while they are waiting so they can use the time to connect, get support, talk to each other, perhaps gain a little information about what they are waiting for, watch a video, so the time doesn’t not become wasted and wasted with anxiety but really a nice way to keep connected with others who understand.
Andrea: There are great opportunities for cancer patients to get maid service and meals delivered. I think that’s great but caregivers need those services as well. For caregivers to be able to tap into those services just as easily as the patients would be a great paradigm shift for those of us who are trying to manage households and health crises at the same time.
Kristina: There are a lot of resources and the problem is finding them, especially while you are in crisis mode.
Denise: We have a great knowledge base yet we do not tap into it so I’m trying to build a care squad. It is a volunteer-based group. The care squad goes to the home, meets with the family caregiver and says here are some suggestions for you. The care squad stays involved throughout that caregiving experience. At the end of caregiving, the care squad helps the family caregiver transition.
The Health Activists who participated in Monday’s roundtable hail from different backgrounds and as such their stories are diverse. However, the thread which connects them and resonated with me was their passion and commitment to their loved ones in the role as caregivers. In addition, they were forthcoming as they shared their experiences and readily offered suggestions for those about to embark on similar journeys. Andrea, Kristina and Denise, thank you for your contribution.