As a home care nurse I often visited patients with age-related macular degeneration (ARMD). The patients and family members often shared some of their experiences during my visits. I also attended and facilitated educational programs that addressed this topic and the many challenges that patients and families experience.
My perspective of ARMD changed when my husband started to experience vision changes several years ago. The Amsler grid became a fixture on the wall. Six-month visits to the ophthalmologist were scheduled, various eye drops started, and changes around the house were implemented. Brighter bulbs, night lights, keeping everything in its place so there would be no obstacles in his path, allowing the end of the toilet paper to hang loose so it was readily available, and blue-colored paper dots on the microwave buttons that he used on a regular basis, all became regular parts of every day. I incorporated the many tips that I had shared with my home care patients and families into my personal life.
About 6 years ago he had to give up driving. This was the beginning of the loss of his independence. He now depended on me for daily activities such as trips to the store, medical appointments, and other shopping. After some time, he needed me to read to him. We had visits with low-vision specialists to identify visual aids that would assist beyond the use of a magnifying glass, with or without a light, and special glasses.
About 3 years ago he experienced the total loss of vision in one eye. Following an extensive examination, Lucentis injections were initiated in one eye and laser surgery was done on the other eye. Eventually, he lost most vision in the second eye. He continues with the Lucentis injection in the one eye in an effort to preserve the remaining and he is legally blind. His need for help with personal care increased to include care of his finger and toenails so that he does not cut himself. He chooses to listen to a radio or television (rather than watch the television) because the screen is cloudy and he cannot distinguish what is occurring with the program.
The most recent challenges for my husband and me are his visual illusions. Charles Bonnet first described Charles Bonnet syndrome in 1760. This syndrome of formed visual hallucinations in cognitively normal patients, who are usually elderly and commonly visually impaired, is well known in ophthalmology. Thomas Hedges (2007) noted that Bonnet was partially deaf from the age of 7 years. His deafness may have played a part in the later story of his visual hallucinations based on sensory deprivation. Hedges included a description of how Bonnet's 87-year-old grandfather experienced the spontaneous occurrence of formed visual hallucinations. Many of the illusions Bonnet mentioned, including figures of men or women, various movements that got closer then flee, diminish, or increase in size, and seeing the buildings rise in front of his eyes are similar to those experienced by my husband. It is interesting to note that my husband also has profound hearing loss and wears hearing aids.
The retina specialist assured us that my husband's hallucinations are visual, not mental, but the effects are still a challenge. He sees someone on the sofa beside me, and children on our porch. These illusions are real to him. New medications have been prescribed to help to alleviate some of these illusions and accompanying anxiety. However, the medications are still being adjusted so that he has the desired effect without being overly drowsy during the day.
Almost a half-century ago our marriage vows included the words: "To love and to cherish ... in sickness and in health ..." We have had many wonderful, healthy years and our love will continue during the challenging years ahead. I receive strength for each day through my faith, support, and prayers from members of our faith community, friends, and extended family. ARMD and Charles Bonnet syndrome are no longer medical diagnoses but a daily reality!
Note: My husband, Charles, died in September 2014.
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