How To Support Someone With Diabetes-Related Macular Edema

As is true with many medical conditions, the experience of diabetes-related macular edema (DME) varies from person to person. This means a one-size-fits-all approach to caregiving isn’t going to work.

But there is one single most important thing you can do as a caregiver: Try to understand and empathize with your loved one — and be open to adapting your approach to fit their changing needs. In other words, communication is key.

How to support someone with DME

It’s important to help your loved one adapt to life with low vision, and that can mean a lot of things — like helping with home modifications, getting assistive devices that’ll help them retain their independence and ensuring they’re receiving the mental health support they need.

We talked to ophthalmologist Nicole Bajic, MD, about the many different kinds of caregiving needs people living with DME may have. Here’s what she told us.

Provide emotional support

Some people living with DME are diagnosed early, respond well to treatment and experience minimal vision impairment. Other people’s vision deteriorates to the level of legal blindness. In Dr. Bajic’s experience, you can’t assume the latter will require more mental health support than the former.

Who we are, what we do and what we value impacts our response to vision loss. And there’s no one “right way” to cope. Denial, anger, sorrow, self-pity, hopelessness, withdrawal, wallowing: It’s all normal … to a point.

In addition to providing an empathetic ear, it’s important for DME caregivers to maintain a watchful eye. Your loved one needs and deserves a chance to grieve, but long-term depression or anxiety should be addressed by a mental health professional.

Here are a few ways you can offer emotional support:

• Don’t assume you know what your loved one needs help doing. Ask them. They’re the expert!
• Acknowledge and validate your loved one’s grief, as well as your own.
• Be honest with yourself about your feelings on topics like diabetes, vision loss and disability. Address those feelings with a mental health professional if needed.
• Encourage your loved one to stay engaged in the world around them — to see friends, keep up their personal hygiene routine, be active and continue doing things they enjoy.

Offer practical support

It’s important to have a conversation with your loved one about their symptoms and what, if any, day-to-day activities they’re struggling with.

But it can be hard to know what’s needed — especially if someone’s only recently been diagnosed. Start by having your loved one walk you through everything they do in a regular day.

For example, if they’re no longer able to drive, they’ll likely require assistance with errands. Depending on the extent of their vision loss, they may also need help with household chores, like cleaning and meal prep. Or maybe they need technical help doing things like setting up a text-to-speech program on their computer or downloading audiobooks.

Addressing and helping manage these practicalities can make living with DME a little less stressful.

Support lifestyle changes

When your loved one is experiencing vision loss as a result of DME, there are a number of different lifestyle changes they’ll need to make. But first and foremost, they need to improve their diabetes management. But that’s a lot easier to do when you’re not the only one making changes, and that’s where you come in!

Dr. Bajic offers the example of adjusting eating habits. “You can make small adjustments to family meals that are palatable for everyone — including those people who don’t have diabetes,” she says. “Making good meals that are enjoyable and healthy can help the person with DME not feel like a burden.”

Not nearby? That’s OK! Set up a recurring grocery delivery or arrange for a meal delivery service subscription. Just make sure you’re using a service that offers diabetes-friendly food choices.

Here are a few other vision-preserving changes you can help your loved one make:

• Accompany them on walks or on trips to the gym — getting active is more fun with friends!
• Encourage your loved one to track their vision symptoms, noting if anything is changing or if there are any noticeable patterns developing.
• Help them stay on track with their medications. If your loved one has a fear of needles, mobility issues or is otherwise unable to manage insulin administration, you may need to do it.
• Encourage them to monitor their blood sugar and blood pressure regularly. If they aren’t able to do it themselves, keep a written record of your loved one’s daily readings to share with their healthcare team.
• Keep an eye out for sign of hypoglycemia, hyperglycemia or diabetes-related ketoacidosis (DKA).
• Keep track of their doctor’s appointments and treatments — and attend if you can.

Take care of yourself, too

If you’ve read this far, chances are you care deeply about a person living with DME. It’s important — for both your sake and theirs — that you show yourself the same love and kindness you’re showing them.

“Caregivers often take care of their loved one’s needs first,” Dr. Bajic notes. “They can get so wrapped up in taking care of other people that they let a lot of their own health needs slide.”

She explains that waiting for the “right time” to take care of yourself is a mistake.

“Don’t wait until your loved one doesn’t need you anymore to start addressing your health and wellness,” she says. “You have to take care of yourself, too. You’re a person. You’re worthy. Your needs deserve to be addressed, too.”

In her experience, Dr. Bajic says that caregivers often neglect their mental health needs. There’s no shame in struggling with your new responsibilities — and having a safe space to vent your feelings, fears and frustrations is crucial.

In addition to formal counseling, there are lots of support groups out there specifically dedicated to caregivers. They’re great places to discuss the challenges you’re facing, but that’s not the only reason they’re helpful. Support groups are also idea banks. If you’re struggling to manage a specific aspect of your loved one’s condition, bring it to the group! Somebody else has probably been there.

Here are a few other tips for caregiver self-care:

• Make time for the things you enjoy. Do you love reading? Make sure you get to do it for at least 15 minutes every day. If going to religious services or a weekly art class brings you joy, make it a priority in your schedule. If your loved one can’t be left alone, bring them along! They can always listen to an audiobook or podcast if they don’t share your interests.
• Adopt a mindfulness practice. Mindfulness can take a variety of forms, from intentional movement practices like tai chi and qigong, to meditation and breathing exercises.
• Connect with support services. There are a lot of different kinds of support services out there that can help both you and your loved one face the challenges of DME vision loss.
  • Support services for people with low vision. Organizations like Rides in Sight™ and Lighthouse Guild can provide assistance and training to help people with vision impairments regain some of their independence.
  • National caregiving organizations. There are many different organizations designed to support caregivers of all sorts, from the Caregiver Action Network (CAN) and the National Volunteer Caregiving Network (NVCN) to your local chapter of the American Red Cross, which — depending on your location — may offer caregiver training programs.
  • Respite providers. Respite care is a short-term relief service. It can take many different forms, depending on your and your loved one’s needs. A few examples of respite care are adult day programs, home health visits and short-term emergency care services.
• Ask for help when you need it. It can be hard for friends (and even family) to know how exactly they can help. That’s why it’s important to communicate and be specific. Ask your brother to cook on Thursday nights so you can spend that evening with friends. Ask your kids to take over dog-walking duty. See if your friend wouldn’t mind bringing your loved one along the next time they’re going to the barber. Reach out on social media to see if somebody, anybody, could move that one piece of furniture you can’t manage yourself. You might be surprised how many people are willing to help when they know what to do.

And here’s one last tip: Don’t forget that the support you’re providing your loved one is special.

“I always tell my patients how lucky they are to have a caregiver,” Dr. Bajic says. “We should all acknowledge their role and how vital they can be — how helpful they really are.”

So, just in case nobody’s told you today: You’re doing a great job.