When Vision Loss Affects the Whole Family

Hadley

When Vision Loss Affects the Whole Family

Presented by Ricky Enger

Ricky Enger: Vision loss is a change that can impact every part of your life, including your loved ones. In this episode, Hadley's Cristi Stearns and Isabelle Warga join us to discuss available support and resources for family and friends. I'm Ricky Enger, and this is Hadley Presents.

Did you know you can listen to our podcast plus find how-tos, discussion groups, and more, right from your phone or tablet with the new Hadley app? Search for Hadley Helps in the app store or text APP to 52545 and we'll send you a link to download. And now on with the show. Welcome to the show, Cristi, Isabelle.

Cristi Stearns: Thank you so much, Ricky. Hi, thank you for having us.

Isabelle Warga: Good to be here. Thank you.

Ricky Enger: It is wonderful to have you both. So, for those listening who might not be familiar with either of you, why don't we just get a brief intro? Tell us about what you do at Hadley. Isabelle, because you're new, we're going to start with you.

Isabelle Warga: Wonderful. Thank you so much, Ricky. So yes, I'm Isabelle and I am one of the social support specialists here at Hadley. And what I do is facilitate our Adjusting and Coping Together support groups as well as our Family and Friends Adjusting Together groups. And then I provide support to our community members on the phone.

Ricky Enger: That's fantastic and we appreciate it. Cristi, how about you?

Cristi Stearns: Yes. Thank you, Ricky. I am the Director of Member Engagement here at Hadley. So, my role focuses on helping our members adjusting to vision loss move from their very first connection with us to meaningful ongoing engagement with our services here in our Hadley community.

Ricky Enger: Yeah, that's important. We want people to stick around once they have found us and just be able to take advantage of all of those resources. So, each of you has facilitated our Adjusting and Coping Together support groups. And if you're listening and you have no idea what those are, those are groups where it's a small set of people who are in that adjustment process for vision loss and a lot gets discussed in those groups. So, I imagine that friends and family is a topic that comes up. Dynamics change, things shift a little bit. And I'm wondering if there are just some common things that people have said, "I wish my husband understood that" or "I wish I could communicate this to my son," things like that.

Cristi Stearns: Yes, this certainly comes up quite often in our groups, Ricky. And one of the biggest things members want their loved ones to understand is that just because they may look the same on the outside doesn't mean their experience of the world is the same.

Obviously, vision loss can bring feelings of grief, frustration, fear, embarrassment, overall loss of confidence, and those feelings aren't always visible to the people around them. We hear quite a bit about the struggle between wanting to remain independent and needing additional support. Someone experiencing vision loss may appreciate that their spouse or adult child wants to help, but at the same time, they feel frustrated when that person steps in maybe a little too much and does something that they could have done themselves.

Ricky Enger: Right. Isabelle, anything you'd like to add?

Isabelle Warga: Yeah. I think that was a great point, Cristi. I think our members often talk about how difficult it is to even reach out and ask for help, that they often feel like a burden when they do that. And that's why they're often attempting to do things all on their own. And I think for them, it'd be helpful to share that they often say you don't need a tiptoe around them. They'd rather you ask and be curious about the experience than say nothing at all.

But like Cristi shared, there's a balance to it. I think it's so natural for family and friends just to want to jump in and attempt to solve all the challenges that their loved one might be facing, but rather it's about having that conversation to talk about their struggles, their efforts, their wins, and see where they can fit in and offer that support.

Cristi Stearns: I think that's a really great point, Isabelle. I think what our members often want most is just patience, understanding and the opportunity to have a voice in how they're supported.

Ricky Enger: That is such a good point, having a voice and feeling represented in decisions that are happening. And all of that comes down to communication, I think. And that can be something that we're all perfect at initially. It's always going to be a work in progress. When we talk with Hadley members on the phone who are experiencing vision loss, one of the things we always want them to know is you're not alone. You're not the only person who is experiencing this. You don't have to go through this by yourself.

And I'm wondering about the loved ones, the support network. Do you think it’s easy for them to realize you are not alone as you are watching these changes with your loved ones with vision loss? You're not alone as you're learning to navigate how things are shifting. And I think that it doesn't get talked about as often.

So, I'm wondering what are some ways that family and friends can find resources, can find places to ask questions or connect with other people?

Isabelle Warga: Yeah. Ricky, I completely agree. It's not easy for loved ones to find that same support. And it's also not easy for them to recognize that they too deserve that level of support. I think they're often so focused on their role as a support person that they might not consider how they're being impacted and that they might be overwhelmed and grieving as well. I think as far as seeking that support, it may be helpful to talk with loved ones, check out if there's any resources at the local blind organizations in your area, or consider meeting with a therapist both individually and as a family.

Ricky Enger: Great point. Anything to add, Cristi?

Cristi Stearns: I think Isabelle did a great job of just expressing how difficult it can be and most likely more difficult for family members and friends recognizing that they need that support. She hit the nail on the head that it is important for them to recognize those needs for themselves.

And also, how she highlighted that not everyone may identify themselves as a caregiver. They may just simply think of themselves as a spouse or an adult child thinking I'm just helping my mom or a close friend may not see themselves as a caregiver at all. That's one of the reasons we wanted our program to be inclusive of family members and friends regardless of whether they identify with that caregiver role, just to have that opportunity.

Ricky Enger: Yeah, absolutely. Because I think the word caregiver does have some connotations both for the person who is supporting and for the person being supported. So, figuring out how you identify is maybe less important than knowing that there is support for you and that you deserve to find that and have that safe space to discuss things. So, to that end, we recently did have a support group much like our Adjusting and Coping Together support group, and we invited family members to participate in that. And we hope it's the first of many. I'm curious what came out of that support group? What were some takeaways that the family members, the loved ones are finding challenging with an adjustment like this?

Isabelle Warga: Yeah. That very first group was so amazing. I'm sure Cristi would say the same. What stood out to me the most was the parallels and experience that just like our members with vision loss, the loved ones are going through an adjustment process. They're grieving and at the same time, they're putting an incredible amount of effort to learn how to best support their loved one. And so, we had the opportunity to explore that in our group. And one theme that Cristi and I were speaking about the other day that was very clear throughout every session was the challenges that arise when balancing support and independence. The group members spent a lot of time wondering, am I doing too much? Am I not doing enough? How do I know when to step in, especially when there's risk involved and when to stay back and allow room for independence?

Cristi Stearns: Absolutely, Isabelle. I think one of the things that really stood out for me, and I would say both of us, is just how meaningful it was for those family members to have that space where the focus was actually on them. So often their conversations revolve around how their loved one is doing, what their loved one needs, or how they can be more helpful.

And while all of those things are obviously very important, we wanted to create a space where we could ask, how are you navigating all of these changes in this adjustment process? Because obviously, like Isabelle mentioned, there are some complicated emotions that accompany supporting someone with vision loss.

People may feel sad about changes in their relationship, anxiety about the future, frustration when their attempts to help aren't well received, or like Isabel said, guilt for various reasons and wanting to have time for themselves or guilt that they aren't experiencing the vision loss, that they are still sighted. And that can be difficult to acknowledge, especially when you care deeply about the person experiencing vision loss.

Ricky Enger: And it sounds like it was really helpful for people to be able to discuss all of those feelings and to have a place where they could say, "Oh, it's not just me." And I imagine too that as part of those discussions, just as with our adjusting and coping together or really anything that we're doing, in those discussions, ideas come about, "Hey, we could try this. Hey, have you tried that?" Because that's really part of being a member of a community, whether it's a very small group like these are or something larger, you're all exchanging not only feelings and acknowledging what you're all going through, but also maybe sharing some ways when I'm feeling like this, here's what I've done, maybe this will help.

So, we are actually in the process of putting together more groups like this. This first one was such a success, so we want to do more of these.

We know that it's important. So, if someone is listening and maybe you have vision loss and you're like, "Oh, I know my wife needs this or I know my daughter needs this," or maybe you are a family member and you're listening and you want to be involved, what's the process for showing interest in participating in a group like this at Hadley?

Cristi Stearns: Yes, Ricky, we're really excited about continuing to offer family and friends adjusting together groups. As you mentioned, our first group was a pilot, which gave us an opportunity to begin exploring how we could better support people who are supporting their loved ones with vision loss. And so, as we are developing additional groups, we hope that people can call us here at Hadley on our 800 number or they can reach out by email as well.

Ricky Enger: And so, we'll have that number in the show notes. It's 800-323-4238. And again, you can also email us [email protected] is a good place to start just to say, "Hey, I would love to be involved." We're also going to have some videos. We currently have a set of videos on the emotional impact of vision loss. If you're a person with vision loss yourself, or even if you're a family member and you kind of want to get a glimpse of what is my loved one going through, those are available. So, in early January, we're going to have the compliment to that for friends and family. And I actually don't know this, so I'm curious what topics are going to be covered in those videos. What kinds of things are we talking about there?

Isabelle Warga: Yes, so we're very excited for these videos that are being developed, and the topics in the videos that we'll cover will be similar to those that we've explored in our support groups. So, they'll talk about the understanding of vision loss, some of those more difficult or uncomfortable emotions that can arise with adjusting, like grief and loss, talking about feelings of guilt. They'll also explore relationship dynamics and then healthy ways to manage this stress and cope with it.

Ricky Enger: That makes sense.

Cristi Stearns: I think it's also really important to point out that in these videos, we won't just be talking about how to help someone with vision loss. We'll be talking about how to navigate the emotional changes that happen within families and relationships and how to care for yourself in the process as well.

Ricky Enger: Yeah, I think it's so important to acknowledge that it's a big change and it's a big change for everyone, and each person has kind of their own internal emotional things happening, and that in turn affects the dynamic of the household. And just figuring out how to navigate through all of that together can be a challenge, but it's also very, very possible to do in a healthy way, and we're hoping to help with that.

So, as we're putting together these groups for loved ones and these videos of how to navigate these challenges, are there things that people can do in the meantime just to have some ideas about what's available, what is possible either from a practical or from an emotional standpoint?

Cristi Stearns: Sure. I think it's really important to recognize that anyone can access any of our content here at Hadley, whether it's our practical how-tos or workshops or all the way through our podcasts. Also, as you were mentioning, the emotional impact of vision loss videos before, and also start having those conversations about the emotional side of vision loss, even if they feel a little bit uncomfortable at first.

For someone experiencing vision loss, I think it's important to share those videos with a spouse, adult, child, or friend. It might be a wonderful way to start that conversation just to share how they might be feeling as someone who's experiencing vision loss, just to help expand that knowledge.

Ricky Enger: Yes, absolutely. And I will say that it is easy to access our content. You can do so from anywhere. We do have our website, and we also have our free app now, so that's really exciting. We've done some awesome redesign as well, and I think that may make a couple of things a bit easier to find. What might people notice as they open the website or the app in terms of how they can find content?

Cristi Stearns: One thing that anyone visiting our website might notice in the redesign that we recently published was we now have sections of common challenges that people experiencing vision loss might be facing. And we also have a whole section for family members or anyone who has a loved one that has vision loss. So, you can select that section there and you'll find many of our resources that might pertain to you, helping you understand vision loss a little better or also what your loved one might be experiencing.

Ricky Enger: Fantastic. So do be sure and check out the website, hadleyhelps.org. Search for Hadley Helps in the app store or just give us a call. We're happy to help you navigate any of this and just have that discussion, 800-323-4238. Thanks so much, Isabelle and Christie. It's been wonderful having you here, and I appreciate everything you do and for stopping by and sharing your thoughts.

Cristi Stearns: Thank you so much, Ricky.

Isabelle Warga: Thank you, Ricky. Same to you.

Ricky Enger: Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you.

Send us an email at [email protected]. That's P-O-D-C-A-S-T at HadleyHelps. Org, or leave us a message at 847-784-2870. Thanks for listening.