Has someone close to you been diagnosed with age-related macular degeneration? If so, you already know that an AMD diagnosis affects both patient and surrounding loved ones. While low vision specialists, nurses and doctors all provide important and specific guidance, it is often the patient’s family members who provide day-to-day assistance. And whether you’re a daughter, son, sister, or best friend helping care for a person with AMD, it can be helpful to acquire advice from someone who’s been through it firsthand.
Allison Shaw knows exactly what it’s like to ‘be there’ for someone coping with an AMD diagnosis. In fact, Shaw has been caring for her father- who was diagnosed with AMD in 2006- for over a decade. In the early stages of the condition, her father’s eye sight was stable and manageable. However, over the past few years his eye sight has started to deteriorate significantly, leaving Allison and her brother, Bill with an added responsibility. They have had to learn how to help their father adjust to life with low vision; a difficult transition for both patient and caregiver.
“His eye sight has generally deteriorated over the past two or three years. I think he can only see mostly shapes and shadows now. He has trouble distinguishing fine characters. He can’t see the puck when he watches hockey on TV anymore,” says Allison.
Though dealing with a degenerative condition is never easy, Allison says she’s learning how to help her father in little ways every day. The following are helpful strategies that Allison suggests all caregivers can utilize when assisting someone with low vision:
Find a low vision specialist: Low vision specialists are licensed optometrists who are trained in the management of patients with visual impairments. These specialized doctors are able to evaluate the degree of vision loss and teach sufferers about non-optical adaptive devices like proper light fixtures and audio clocks. (Note: Medicare typically provides some coverage for low vision services, so check with your insurance first.)
Be watchful: Everyone responds differently to learning they have a degenerative eye condition. Stress, shock and disbelief are all common reactions and feelings that can last for weeks, months, or more. As a caregiver, it’s important to remember that a caring, helpful support system can be the key to successful adjustment. However, while watching for persisting symptoms of anger, sadness and shock, it’s important to avoid being overprotective as a caregiver. Realize that you must leave some room and time for the person you’re caring for to grieve their lost vision. However, if symptoms persist for longer than a few months, seek a doctor as depression in AMD patients is not uncommon.
Home adjustments: It’s important that a low vision patient live in a safe, stable environment. Removing obstructions, throw rugs and even unnecessary doors can make a home instantly more vision-impaired friendly.
“Sometimes dad hits the corner of doors as he’s walking through. Ensure good lighting in the home, and keep the home clear of clutter,” suggests Allison. “Try to ensure additional lighting in the home and place necessary items within arm’s reach,” she adds.
Learn: Obtain as much information as you possibly can about macular degeneration right away. It may help to take notes. Use the internet or your local library to discover different insights, treatments, and facts. The more you know, the easier it will be to engage in open conversation about the condition with the individual you’re caring for.
Provide: Understand that as a caregiver, being there for the person you’re caring for both physically and emotional are equally important. Be ready to pursue ophthalmology appointments, prepare balanced meals, assist with transportation needs and lend an ear when necessary.
“We assist [dad] with walking, personal hygiene and grooming. For example, dad can’t clearly see how much toothpaste is on the brush, so we monitor that. Plus, we purchase and oversee supplements,” says Allison. Her father is currently supplementing with MacuHealth to slow the progression of his AMD and says he prefers the small size of the tablets compared to his previous brand of pills.
Support Groups: Search the internet to find support groups and other resources within your area. These support groups can be invaluable in that they offer the opportunity for AMD patients to learn how others are coping with vision loss.
“Keeping [dad] stimulated and socially involved [is important]. But it’s difficult to find activities that do not involve sight. With increasing vision loss, one may tend to become socially isolated,” suggests Allison.
Encourage exercise: It’s imperative that those with AMD realize that they can (and should!) stay active despite worsening eye sight. It could be that your loved one truly wants to exercise, but is embarrassed or frightened to go to the gym (or even outdoors) alone. Provide support and educate yourself about the best exercises for those with low vision. Such exercises can include yoga, walking and recumbent bike.
“We assist with walking. We make sure that we know [dad’s] limitations, and try to push them,” says Allison.
Encourage a healthy diet & lifestyle: Hopefully as a caregiver, you’ve done some research into which vitamins and minerals can slow the progression of AMD. Encourage the person your caring for to increase their intake of eye-healthy foods that contain carotenoids. Foods high in carotenoids (lutein and/or zeaxanthin) include sweet potatoes, cantaloupe, spinach and corn. Further, it’s essential that AMD patients who smoke, quit smoking and maintain normal blood pressure levels. If the person you’re caring for is a smoker, help and encourage them to kick the habit.
It’s no secret that being a caregiver- especially the primary caregiver- is no easy task. Being a caregiver for a patient with a degenerative condition can trigger a host of difficult emotions such as guilt, helplessness and grief. It’s important to acknowledge your feelings- both good and bad.
“I do become disheartened every time dad says ‘I can’t see’”, says Allison. “But we make adjustments and attend ophthalmology appointments every six months.”
It’s also very likely that daily, simple tasks will take longer and certain activities may no longer be possible. “Be prepared to be patient,” she adds.
Finally, don’t be intimidated to ask others for help. Caring for someone with low vision can be an overwhelming undertaking, especially initially. Try asking a friend or relative to take your loved one to their appointment or support group meeting occasionally. Remember, you are not alone in this- and most people are more than willing to lend a helping hand; all you have to do is ask.