How to Handle Aging Loved Ones

On this episode of Change Makers, we are learning more about aging loved ones, mainly loved ones with declining vision. Learn what resources are available and how you can help your loved ones this holiday season

On this Episode (In Order of Appearance)

• Kathryn Frederick, Digital Content Manager VisionAware, APH ConnectCenter
• Lori Scharff, APH ConnectCenter
• Pris Rogers, Special Advisor, Aging and Vision Loss

Additional Links

• APH Connect Center
• Getting Started 2020: A Guide for People New to Vision Loss

Transcript

Narrator: 0:00

<silence> Welcome to Change Makers , a podcast from a p h. We're talking to people from around the world who are creating positive change in the lives of people who are blind or have low vision. Here's your host.

Sara Brown: 0:15

Hello and welcome to Change Makers . I'm APH's Public Relations Manager, Sara Brown . And today we are learning more about aging loved ones, mainly loved ones with declining vision. Learn what resources are available and how you can help your loved ones this holiday season. Also, we're gonna learn how to handle vision loss in the workplace. Up. First, I'm talking to Katie Frederick and Pris Rogers. Hello Katie and Pris, and welcome to Change Makers .

Kathryn Frederick: 0:44

Thanks for having me.

Pris Rogers: 0:46

Great to be here.

Sara Brown: 0:47

Would you like to introduce yourselves to our listeners?

Kathryn Frederick: 0:51

Well, thank you for having us, <laugh> . <laugh> . Um, Pris and I work together, and so we oftentimes talk together sometimes too. So , um, I'll start though. I'm Katie Frederick and I am a Digital Content Manager in the Connect Center, a part of APH and I focus on our, the segment of the ConnectCenter known as Vision Aware , which is our adult and , um, resource for adults and , um, older people as well as professionals in the field.

Pris Rogers: 1:27

This is Pris and I , uh, help Katie with Vision Aware . I have been involved with Vision Aware for a long time in another life, so I've been helping out with that <laugh> and also I work with AFB as a special advisor on Aging and Vision Loss and with a National Coalition on Aging and Vision Loss, where we're doing a lot of work having to do with , uh, service needs and other things that older people , uh, with vision loss have. So,

Sara Brown: 1:55

Alright . And talk about some of the services that the Connect Center and Vision Aware provide.

Kathryn Frederick: 2:00

So we have in the ConnectCenter , um, we have, we recently redid our new website, and that's, that happened at the beginning of, of August. So the new APH connectcenter .org has all of our resources and content in one place. So we hope that that makes it a little bit more easy for people to find , um, what they're looking for. And so we offer , um, we have blogs, we have webinars, we have , um, our Connect Center calendar, which is open to the community so people can submit events of interest , um, for the field. Um, we have our directory of services and we're working on updating that and making sure that that is up to date with that as a listing of agencies that help people who are blind to low vision all across the country. So , um, we're getting that updated and we also have our information referral line, and that is, that's really a, a core part of our, our work. I mean, all of it is, you know, connects together. That's why we're called the Connect Center. But , um, the information referral line is really where, you know, people can call in, talk to Alan or Sharon, one of our, our specialists who are both individuals who are blind and really receive, you know, some of that personal experience and , um, you know, get, get the help that they need to answer their questions and, and help them , um, navigate their life as someone who's blind or low vision .

Sara Brown: 3:36

And this podcast is about aging, loved ones that are losing their sight. What information and details can visitors find to the ConnectCenter website about this topic?

Kathryn Frederick: 3:48

Pris, do you wanna talk about some of our, our aging articles that we have up?

Pris Rogers: 3:52

Oh, sure. I'll be glad to. Um, a major issue that older people with vision loss often have is social isolation. So , uh, in our aging section we have some information on social isolation and loneliness and , and so forth so that people will know about that particular topic because it's, it is just really major. And although , um, this, the self-care section is not in that area , uh, one of our peer advisors, Audrey Dimon , has just written a wonderful series on self-care and that includes some information about social isolation as well. So I would recommend that , uh, to anybody. Uh, we also have other articles about , um, what to do if you have other types of, of conditions such as dementia and , and vision loss or , uh, you know, there are all kinds of things that go along. In fact, I've been involved in another life and working on a study that indicates there are a number of chronic conditions that are associated with aging, such as diabetes and heart disease and so forth. And they're really high numbers , uh, with older people who have vision loss. So , uh, we, we try to have a lot of information on Vision Aware that addresses those issues. And we do have a great deal of information, for example, on diabetes, how to live with it, how you can control it, how to deal with it. Uh, just a lot of stuff in English and Spanish. So not just for , um, the , the , uh, family caregiver who speaks English, but also Spanish because diabetes is an a , a major issue among the Hispanic population. So that's the reason that we wanted to make sure we had really , uh, good information in , in that area as well. So we are gonna be adding to the aging section as we go , uh, because there're like , uh, we talked about , uh, this is such a , a major issue in the , in the visual impairment community. Uh, older people with vision loss make a , a larger number of people with vision loss in any other age group. And it's increasing , um, as we go along. So , uh, we want to be aware of that. We are aware of that at Vision Aware, and we will continue to add to that area of our site as we go along. And we also have set up a section , uh, for family members as well and on Vision Aware , uh, which will have , does have some really good information for those family members.

Kathryn Frederick: 6:15

Um, we also have some articles on , um, that while they may not be directly aging related to aging , um, some applicable topics that might apply. You know, talking about vision changes in your mental health , um, managing depression , um, especially, you know, during the holidays that might come up as, as, again, kind of tying back to that, that lonely piece or that , um, piece that we talked about earlier with the loneliness. So just again, a wealth of of content and resources and, and as I said, we have, we have more to come that we are going to be adding in our , um, Aging 101 section of our, our website.

Pris Rogers: 6:54

And one other thing we have, in addition to the information that I talked about on diabetes, we have a lot of information on the age-related eye conditions such as macular degeneration. And so that's , uh, uh, that's, you know, when when someone goes to the doctor and they get a diagnosis, sometimes they're not prepared to listen to that and really understand what the doctor's trying to say. So they may want to go and look up some additional information. So we have a lot of, of good information on the site . It's been vetted by eyecare professionals, so , uh, people can find that information in our eyecare section as well .

Sara Brown: 7:32

So it sounds like there's a lot of resources available for those who are in the, in the middle of losing their, their vision. So it's, it's the holiday season and you maybe you haven't seen mom, dad, or grandma in a couple of months and you're noticing things just are a little, are a little bit different. How do you even get that conversation going to convince that, convince that that loved one that they might need a little bit of help? That's a hard topic.

Pris Rogers: 7:59

Yeah. 'cause it's really hard to think clearly. Uh, and , and both on both sides. 'cause the older person having the vision problems, it's hard for them to think about it. It's hard for the family member. Uh , some of the conditions are actually hereditary. So if mom has macular degeneration, it's a chance that the , uh, the daughter might end up having it as well. And so, I mean, in, in addition just to the regular emotion, you have other things going around. So I think it's , um, I think one of the most important things to think about is communication and how you can do that with sim sensitivity and empathy. Not sympathy. 'cause sympathy doesn't get you anywhere. And it often is a coupled with the idea that the older person may think you're trying to take over. And I , I think that's a really critical piece that people need to think about is that everybody wants their independence. They don't wanna be set told, well, "I'm sorry mom, you can't cook anymore." You can't do this anymore because you're having vision problems. So it's a very delicate situation and, and as you're talking about around the holidays, you already have emotional things going on anyway, so it , um, it's really hard to kind of sit down and have that conversation, although , uh, it's important. And , uh, I suggest that the , that the family member, if they're noticing situations, say they've noticed their mom is having a problem with taking their medications or being able to even, you know, fix a cup of coffee because , uh, maybe they're missing the cup or something like that, that they address that and ask, you know, if they've had an eye, if they've had an eye exam that they've noticed that these things are going on. And maybe it'd be a good time to talk about it and, and what might be done and where they might go. Uh , but if the emotions start to come out, it might be time to stop, you know, for a little while and everybody get themselves back together. 'cause you don't want to have this anger and , uh, outburst that, that won't help anything to have , uh, the good conversation that you might need to have about, about vision problems.

Sara Brown: 10:04

And so, so when you're there, say, you know, you're , you're home for the holidays and you see, you know what you've, maybe they're missing the , the , they've got the cup under the, under the water faucet and they're , and they're missing it. What are some things you can do ? Are there some things you can do right then and there to, to, to help their loved one?

Pris Rogers: 10:26

Well, you might talk to them about what happened. I , "I noticed that you didn't, weren't able to get water into that cup. Is that you're not seeing it?" "Would it be helpful , uh, to try a different color cup?" 'cause 'cause contrast sometimes makes a difference. You know, if they're using a dark cup and it's up against a dark surface, they might not see it. If it's a white cup, they might, they can also put their finger , uh, you know , uh, in the cup and, and , and pour the water and be able to feel where the water's coming in. There are different little techniques like that. And , um, VisionAware has a lot of information on it. We didn't really get into that, but we have a lot of information on how to help a person or how that person can be able to do , uh, techniques like that by themselves. Um , so, so that would be another place to look. And , and we also have a "Getting Started Kit." Katie , uh, Katie , you may wanna talk about that too .

Kathryn Frederick: 11:19

Yes . Right. So our, our "Getting Started ," um, booklet is, is something that we provide. It's in English and Spanish, and it, you know, has some of those basic tips that we've talked about for , um, you know, modifying the home, making it more livable , um, for someone who might be losing their vision. It's a really good resource. We were actually, we were actually at a conference , um, a few months ago and a , a woman came up and said, "oh, you know, my mother is losing her vision and I just, I don't know where to turn." And so we talked a little bit bit and I said, "oh, would you like to take one of our getting started booklets?" And she just was, you know, very, very appreciative and, and said, "oh yes, you know, this is, you know, kind of glanced at it and said this, this looks great." I, you know, thank you so much." And, and she actually , um, came back to us the next day and said, "I, I read that booklet overnight and, you know, took a look at it last night and this is what I've been needing for years." And that's just really humbling. Um, that still gets me, still humbles me today because this is why we do what we do. This is, you know, this is part of the resources that we wanna provide to everyone to make sure that people know, you know, not only that yes, you know, mom could still live independently. She might need some help with some things or, or, you know, adapting some things in the home. Those can be low cost , you know , um, maybe it's, maybe it's getting a , uh, a white outlet cover on the, or a , you know, black outlet cover on the white wall or, you know, simple modifications that they don't have to be expensive. Um , you know, getting, maybe getting connected to something like a voice assistant where she could just say, you know, "Hey, call, call my daughter or something in case of an emergency or just to talk." Some of these things are very cost effective and or low cost . And that's, you know, again, what we, what we try to provide in our booklet. And it's, it's a booklet that is available, as I said in English and Spanish. It's on our website. It's on the homepage of the, of the APH Connect Center. Um, you can download it as a, as a PDF file or we can also send you , send , um, a copy to you or, or more, you know, copies to you in the, in the mail. So you can have the print booklet , um, if you prefer. And so if folks are interested, they can, you know, contact the Connect Center , um, and get that. We're happy to do that. But that is, you know, that's, it's, it's just such a, such a great tool and can be so empowering for people who, you know, again, just, you know, don't know where to turn. And that's what we wanna be here at the C Connect Center is is that one stop resource for people when they just say, you know, I don't know what to do. What can I do? Where can I go? How can I help? And so we wanna be that help for people.

Pris Rogers: 14:07

Yeah. We want them to get connected to Vision Rehabilitation services to help them , uh, know more about how to deal with their vision loss, like vision rehab teachers and orientation and mobility instructors who can teach white cane skills and that kind of thing. But that may take a while for the person to be able to get that, and they may not even know where to turn. So that's why it's so important...

Kathryn Frederick: 14:26

they might not be ready for it. Right . I mean, that , that's part of it too. It's, it is a, it is a process, a grieving process , uh, an adjustment process. And we have , um, content on, on vision aware about that adjustment piece and how do you, you know, how do you cope with that? And so , um, that that's, it's all part of it. Um, it's, you know, take it one step at a time, one day at a time. Okay .

Sara Brown: 14:50

Tell me about interdependence in vision loss?

Pris Rogers: 14:54

I think this is a really important topic for family members to really think about because we all, we depend on each other. And I think if a family member can help get across to the person who's living, losing vision in their family, that they can still be independent, but they may need help with transportation or they may need help, you know, with grocery shopping or that kind of thing. But in return, if , uh, the family member has say a , a child and they need someone to babysit, the person with vision loss can still do that. And I can remember vividly about a , a individual who was one of our peer advisors who, when she first lost vision, she had been so excited about having her grandchildren. And , but when she lost more vision, she was afraid that her children would not let her keep the kids. So they all came together, they sat down and talked about it, and now she is babysitting five of her grandchildren, and she does it on a regular basis, and it's a win-win for everybody. The grandchildren have their grandmother, the, the , the kids know they have somebody who's gonna do good caregiving. And so it, it does, that's something we need to keep in mind because just because you lose your vision doesn't mean you can't still be viable. You can't still do things and be a really important part of the family and give back. So I think everybody needs to keep that in mind, that it's not a lose-lose, it's a win-win, if you can think about it that way.

Sara Brown: 16:22

Very well said. Thank you Pris.

Pris Rogers: 16:24

Sure.

Sara Brown: 16:25

Is there anything else you all would like to share, whether it be about the ConnectCenter or Vision Aware about some of the resources that are available?

Kathryn Frederick: 16:34

Oh gosh. I mean, we could, we could talk all day about Vision Aware <laugh> . Um, I mean, we do have , um, you know, and we're, as I said, with our new site, we're constantly adding content. So we're going to be putting up , um, by the time the podcast airs, we will have some more content on the topic of, of falls and fall prevention, and that, that kind of goes along with the, the blindness and , and losing vision piece. Um, you know, that's, that's a , a topic of , uh, you know, for people who are aging in general and then adding on the blindness and low vision component. Um, so we'll have more on that. We also have, again, our, our webinars and we have a lot of past , um, archived webinars on our, our YouTube channel that , um, people may find of interest. Again, as Pris mentioned, we have our, our diabetes section on the website, which is a lot of our written content, but we also have webinars on that topic of , um, we worked with a , um, a diabetes , um, educator and , and , uh, who talked about, you know, adapting ways to take insulin and manage your diabetes medication. And we had a series of webinars on that topic. Um, we have webinars on , um, again, fall prevention. We have webinars on how a webinar we did last year on how to adapt your home. Um, if you have low vision, again, talking about that contrast that I mentioned earlier, that can really make a huge difference , um, making sure there's adequate contrast in the home. So , um, we just,

Pris Rogers: 18:09

We have one of driving too, which is a really important topic for people.

Kathryn Frederick: 18:13

Yes. bioptic driving driving mm-hmm. <affirmative> mm-hmm. <affirmative> , um, just so much, I mean, I , I just really encourage people to, to come to the APH connectcenter .org website. Um, we have, you know, the, again, the Vision Aware portion is, is large, and we also have, you know, resources for people who wanna work and for families.

Pris Rogers: 18:36

So another webinar you are gonna have is a gift giving webinar, right, Katie ? We are . And that might , yeah. That might be of interest to family members.

Kathryn Frederick: 18:43

Yes. We also , and we have a gift giving guide , um, that we update annually. So, you know, again, thinking about those, those gifts , um, you know, what, what might be some good gift options for the holidays. So that is something you may wanna check out as well.

Sara Brown: 18:58

Wonderful. Katie , Pris, thank you both so much for joining me today on Change Makers .

Kathryn Frederick and Pris Rogers: 19:05

Did great. Thank you. Thank you , Sara. Yeah.

Sara Brown: 19:12

Now I have Lori Scharff, she's the Lead Content Contractor for APH Connect Center, Employment and Careers. Lori , would you like to introduce yourself and share some information about the work that you do?

Lori Scharff: 19:28

Sure. So , um, I worked for a while as a social worker, and when I moved from New York to Virginia, I decided I was not going to recertify , uh, because there was no reciprocity. And , uh, went back and got a master's in vision rehabilitation therapy. And , um, so I've been working also with people who are of all different types of disabilities and , um, returning to or entering the workforce. Um, and so I've been doing that for about 10 years. Um, and I spent about 17 years as a social worker , uh, working with people in all different types of crisis situations.

Sara Brown: 20:20

Can you talk about what someone should do when their declining vision starts to interfere with their employment?

Lori Scharff: 20:28

So , um, you know, really I think when somebody has a vision issue in the employment setting, it can be hard for both the individual to cope with it because sometimes they don't understand what they're missing visually. Um, they can have a little bit of denial as, you know, everybody can deny what's going on in their life. And it can be hard for an employer to approach an employee and say, look, you know, you're making mistakes , uh, you know, things like that. Um, I think it's important for, as a person who may be experiencing vision changes, it's important to confide in people who you feel safe with. Um, you know, develop your peer relationships by checking out articles or blogs or, you know, videos. Learn what other people are going through because it's not a boat that you have to be in alone. And , um, through the Connect Center, we have a lot of resources that deal with aging and vision loss and vision loss as an employee. Um, we actually are working on a guide specifically for people who , um, are experiencing vision loss in the employment setting so that they can understand how an employer may be of assist assistance and how a vocational rehabilitation system may be of assistance to them.

Sara Brown: 22:09

And have you, have you worked with individuals who have lost their vision suddenly? Or was it more gradual where they had vision issues and then it just continued to get worse?

Lori Scharff: 22:20

Oh, both , um, you know, I , um, actually worked with an individual who was a lawyer and he was sitting in court one day and looked up to see what time it was on the clock, on the back wall of the courtroom . And this was not an extremely large courtroom. Some of the courtrooms in, in New York City happened to be fairly small , um, and it was in the federal court building and he couldn't find the clock on the back wall, and he knew something was wrong and he didn't know what it was. So that was his awakening to experiencing vision loss. Um, in retrospect for him, he had realized he had had some visual changes, but nothing that was, he wasn't able to cope with at that point. Um, and then it was just this, not being able to see the, the clock on the wall really made him realize I have to do something. Um, yeah , you know, I know other people who have had vision loss their whole life, but not realized to what degree their vision had diminished to. And , um, I know somebody that was in law enforcement and went for an annual physical and was deemed legally blind at that point. Um, so it's, it, it can vary. And , um, you know, sometimes when people are experiencing vision loss, we do cope rather well and find way to do things, and we don't realize how severe our vision loss has become.

Sara Brown: 24:05

Wow, my goodness. And just how terrifying for that individual too. So can you talk about how you help someone who has recently lost their vision? I'm sure there are a lot of needs just ranging from mental to physical, emotionally, financially. What would need to be addressed first?

Lori Scharff: 24:25

Well, I think the most important step a lot of times for people is to understand visually what is going on for them. So , um, you know, is this a visual change that is going to be permanent and stable, or is it going to be permanent and continually change? And that's really where working with an ophthalmologist and a low vision specialist can be beneficial depending on the degree of vision loss and the type of vision loss. Also, familiarizing yourself with , uh, the vocational rehabilitation system to provide support so that you can continue to work. Um, you know, understanding that maybe if you have access to a long-term disability policy, you may have to go out on disability , um, and do what we refer to as blindness free rehabilitation to get yourself familiarized with the best way for you to accessibly use your computer. Do you have the ability to use screen enlargement? Do you have the ability to use a , uh, screen reader, which would speak the com , uh, text on a screen to you? Things like that. What accommodations do you need? Um, you know, do you need glare reduction in the work setting to help you see tasks better? Um, these are all things that the vocational rehabilitation system can assist you with, as well as basic activities of daily living and the ability to function at home and prepare your own meals, things like that.

Sara Brown: 26:08

And do you have anything else you would like to share about this topic?

Lori Scharff: 26:12

Well, I think, you know, sometimes when people are experiencing vision loss , uh, and they're new to it, it can be very overwhelming and scary. And I think it's important for people to understand that, but, and it's important to work through those fears and come up with resources and supports that can help you live your life and know that you can thrive after vision loss.

Sara Brown: 26:45

All right , Lori , I do have one more question. Um, this top , this podcast is about aging loved ones. So let's just switch really quick. Mm-hmm. <affirmative> to , you know, you're flying home or you're going home for the holidays and you see mom and dad or grandma or grandpa struggling, but maybe they don't wanna believe it, or maybe they're just in a little bit of denial. What would you suggest for, you know, you're going home and you're seeing this sit scenario play out. What would be some suggestions just to sort of get that conversation going?

Lori Scharff: 27:15

Well, I think , um, there's a way to politely acknowledge that things are going on and very often in individuals facing vision loss or vision loss and other health issues may be aware of it to some extent, but they may have difficulty coping with the reality of it. And letting a loved one know that you will be supportive to the best of your ability and maybe helping them connect with resources within the community, helping them find resources that can help them get to doctor's appointments. So driving is no longer necessary if they are still driving. Um, you know, just being there, being a listening ear say, saying to your loved one that, you know, when you're having a tough day, pick the phone up, call me, send me a text , um, things like that so that they know that you're there to support them. Even that you may be a hundred or a thousand miles away.

Sara Brown: 28:31

Alright, Lori , thank you so much for joining me today on Change Makers.

Lori Scharff: 28:35

Thank you for having me.

Sara Brown: 28:37

Thank you so much for listening to this episode of Change Makers . I have put links to the Connect Center and Vision Aware and other various resources in the show notes, so be sure to check those out. As always, be sure to look for ways you can be a change maker this week.