Taking Care of Yourself: A Guide for Caregivers
A Woman's Experience Caring for a Loved One with Geographic Atrophy
Helping a Loved One with Geographic Atrophy When Sight Begins to Fade
Are you a caregiver? Whether you’re looking after a loved one with a chronic condition or taking care of multiple individuals, it’s easy to feel overwhelmed and forget to prioritize your own well-being. But remember, just like they say on airplanes, you need to put on your own oxygen mask first before assisting others. In other words, you can’t take care of others if you don’t take care of yourself.
👉Pro Tip: Think of yourself as an oxygen-mask-wearing caregiver superhero!
As a caregiver, it’s important to strike a balance between offering support and encouraging independence. For instance, if your loved one has vision loss, help them find solutions to be as independent as they want to be. Being a “helicopter caregiver” might be tempting, but let’s give those helicopters some time off, shall we?
I learned this lesson the hard way when my father was diagnosed with geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD). I wish I had known more about how to help him at the time, which is why I started the Facebook group “Our Macular Degeneration Journey” a few years after his passing. My goal has always been to provide information and support not just to caregivers, but also to those living with any form of AMD.
If you’re a caregiver, you’ve probably realized that you don’t always get all the information you need from the doctor’s office. It can be a frustrating and confusing experience. But fear not, my caregiver comrades, for I am here to share some valuable insights and knowledge with you!
- There’s Hope for Geographic Atrophy: Understanding and Coping with ...
- It’s a Race: Vision Loss vs Hearing Loss
- Living with Low Vision: Tips for Adaptation and Independence 😎👓
The Tale of My Dad 👨🦳
Let me introduce you to my dad, a man of few words who was diagnosed with GA. His vision became spotty about seven years before he passed away, adding to the challenges of caring for both him and my mother, who had Alzheimer’s disease. To make matters more complicated, my husband and I were 700 miles away in Georgia while my parents lived in Pennsylvania. Talk about long-distance caregiving!
We didn’t even know about my dad’s vision problems until we saw him wearing dark sunglasses and complaining about not being able to see certain things. This lack of communication and my dad’s pride made it difficult to provide the support he needed.
GA is a form of dry AMD that causes varying degrees of vision loss. Each individual’s experience with this condition may differ, but it’s important to be vigilant about any signs of vision problems. For my dad, being unable to identify the colors of traffic lights was just the tip of the iceberg.
👀Contrasting Viewpoint: Early signs of AMD can vary, and identifying them can be like trying to spot a needle in a haystack. But fear not, technology and advancements in research are on our side!
After much persistence, we finally got my dad to see his optometrist, but getting information about his condition from a distance was like pulling teeth. Communication via fax and email was the norm, and phone calls were rarely returned. I had to piece together information and find ways to help my dad manage his vision loss. It was a challenge, especially since he was a proud man who often refused help.
One of the most distressing issues he faced was driving. Like many individuals with GA, my dad feared a loss of independence and tried to reassure me that he was only driving locally. However, GA can cause blind spots, which can put not only the person with GA at risk but also others on the road. The safety of my dad, my mom, and others became a constant source of worry.
🚗Beep beep! If you or your loved one has GA, here’s some advice for navigating the roads: use caution when driving and consider alternative transportation options if your vision is deteriorating. From rideshare services to handy apps, there are plenty of ways to get around without risking your safety. And don’t forget to consult with your eye doctor before getting behind the wheel!
Long-Distance Caregiving: Bridging the Gap 🌉
Living far away from my parents posed significant challenges. However, I found ways to bridge the gap and stay informed about their well-being. Regular conversations with my parents’ friends and other family members became a valuable source of information. They often provided more insight than speaking directly to my dad.
💡Bright Idea: Reach out to your loved one’s support network to gain a better understanding of their needs and situation.
Whenever we could, my husband and I traveled to Pennsylvania to spend time with my parents. These visits allowed us to assess and address daily challenges, such as managing my mom’s medication. My husband, a retired occupational therapist specializing in seniors and Alzheimer’s, proved to be an invaluable help to both of my parents.
Together, we gathered an arsenal of magnifiers and strategically placed them around the house, making everyday tasks more manageable for my dad. Looking back, we realize we could have done even more if we had known about the wide range of low-vision adaptive tools and techniques available.
How Caregivers Can Empower Their Loved Ones with Vision Loss 👥👀
Instead of dwelling on what we could have done differently for my dad, let’s focus on the plethora of low-vision aids and services that exist today. If I could turn back time (cue the Cher music), I would have taken my dad to a low-vision optometrist and a low-vision occupational therapist.
💭Quick Question: How can low-vision specialists improvise like MacGyver and make a world of a difference?
Low vision specialists are like wizards who know how to ask the right questions and provide tailored solutions. They can help individuals with low vision regain some of their independence and enhance their quality of life. From telescopic glasses for improved TV viewing to a wide range of magnifiers designed specifically for people with GA, the options are endless.
Some people have also found comfort and convenience in using video magnifiers, also known as CCTVs. These nifty devices allow you to enlarge and examine printed materials, making reading newspapers or books, doing crafts, and even grooming more accessible. If your loved one isn’t exactly tech-savvy, fear not! Low-vision specialists are ready to swoop in and save the day by patiently teaching them how to use adaptive devices effectively.
Seeing Through Their Eyes 👁️
To truly understand what your loved one with GA sees, try out a couple of simple experiments. Pick up a newspaper or write down a few lines of text, then ask them to describe what they see. Do certain letters or words disappear? This exercise can help you appreciate the challenges they face.
Another fun experiment involves an old-fashioned clock with numbers. Ask your loved one to focus on the center dot and tell you what numbers they see. They may mention missing numbers like 2 or 6, or they might not even see the center dot at all. These tests provide valuable insights into their visual reality.
Don’t forget to accompany your loved one to their appointments, and take the time to speak with the doctor about the implications of their test results. Remember, acuity tests may not fully capture how individuals with GA see in the real world. Encourage your loved one to describe specific situations where their vision loss affects them, as this will give you a better understanding of their needs.
Advice Straight from the Heart ❤️
Being a caregiver can be challenging, but it’s essential to prioritize your own well-being. Just like a healthy diet and exercise, stress management is crucial. Develop a strong support network by reaching out to friends, family, online groups, or even local community organizations. Remember, you’re not alone in this journey!
It’s equally vital to arm yourself with knowledge about GA. Explore how the condition changes over time, and familiarize yourself with the various low-vision aids, services, and specialists available. By equipping yourself with information, you become a superhero caregiver capable of fighting fear and uncertainty.
I consider myself a caregiver of sorts for the people in my Facebook community. Many of the newly diagnosed individuals who join our group are understandably scared. But as they share their fears, they realize that the power of information is unparalleled.
📚 Reference List:
- Age-Related Macular Degeneration: Overview and Statistics
- Low Vision Aids and Assistive Devices
- Assistive Devices for People with Vision Loss
- Living with Geographic Atrophy (GA)
- Vision Loss and Independence
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🤝Time to Share! If you found this article helpful or know someone who could benefit from it, don’t keep it to yourself! Share it on your favorite social media platforms and help spread the word. Together, we can make the world a brighter place for caregivers and their loved ones!
