Editor’s Note: November is National Caregivers Month with a special day celebrated on November 1. We have had a large number of inquiries from family members seeking advice, so VisionAware’s support group advisor has written a special blog post to help provide some answers and resources.
Vision Loss: A Distressing Experience
Vision loss is a distressing experience for not only the person with the eye condition but also for their loved ones. When a family member begins to have difficulties with activities of daily living, can no longer drive, and cannot get around safely, it can affect their partner, children, and close friends. Suddenly, the family dynamic changes, and it is difficult to navigate this new experience until you learn more about vision loss and where to find help.
Vision Loss Happens to the Whole Family
While the affected person is trying to adjust to vision changes, they may be frustrated, angry, and withdrawn, which in turn, affects their relationships. In the initial stages, they may feel lost, isolated, and fearful. Vision loss has a powerful effect on a person’s self-esteem and can even lead to depression. These emotions are all normal and quite common in this situation. Even spouses and caregivers will have their own strong feelings in response to how their lives are changing. It can be really hard at times for family members to work through these strong emotions or be the target of them. Indeed, vision loss happens to the whole family.
Caregivers Need Support and Information Too
Until a person who is losing their vision learns to use tools and techniques to return to a desired level of independence, roles and responsibilities within the family may change and be strained. Partners take on new duties and extra tasks around the house, and this can cause stress and tension. Sometimes, partners are unsure how to help; they may help too much or not enough. They may have difficulty understanding how much their loved one sees and what they are still capable of doing. Maybe the person with vision loss becomes "helpless" and unmotivated. Everyone involved needs support and information to find equilibrium again, including the caregivers.
VisionAware Can Help
The VisionAware website is dedicated to supporting adults new to vision loss and their family and friends. It has a wealth of information that can assist families who are facing this new challenge in life. In the "Emotional Support" section, there is information specifically for family and friends. It includes a video of a husband and wife story, communication tips, steps to take to help your loved one, and more. There are a couple of book titles recommended for family members also.
What Can Caregivers Do?
Caregivers can order a Getting Started Kit, learn about eye conditions, ask questions on message boards, and begin to understand about basics like vision rehabilitation and low vision services.
There are many personal stories of encouragement, everyday living tips, and hope offered throughout the site. You and your loved one can even watch informational videos together on VisionAware. Information and knowledge will ease your stress and point you to helpful resources.
Finding Resources and Services for People Who Are Visually Impaired
Use the VisionAware national directory of services to find agencies that serve the visually impaired in your community. Just enter your state to narrow your search. Did you know many agencies offer low vision services and training at no cost to seniors with vision loss through a federally funded program? Learn more about this program, which provides services nationwide for older persons with vision loss. Vision rehabilitation agencies can also help you and your loved one connect to other services like the free Talking Book program for reading, counseling, fall prevention programs, and support groups.
Most support groups for the visually impaired welcome caregivers, spouses, and family members. It can be a very empowering experience to learn how others are managing successfully and receive support and information from them. If the affected person is resistant to attending this type of group, caregivers can go alone for their own benefit. I would recommend private counseling for any couple not coping well with this experience to help them adjust together to all of the changes and losses it can bring. Local counselors could also suggest other support groups.
Learning from Books on Blindness
It can be very helpful to read books on blindness. VisionAware has an exhaustive book list, including one written by a spouse. Maybe you could read some of these books together. You might also want to read an interview with Mary Hiland about her recently published book The Bumpy Road to Assisted Living: A Daughter’s Memoir of her caregiving experiences.
It’s Important to Take Care of Yourself
Caregiving is stressful and can be physically and emotionally demanding. VisionAware offers some tips and resources for taking care of yourself. You have to take time for your own health needs in order to remain strong for your loved one. Make time for yourself every day to manage stress and take a break.
Have the Conversation
It can be very enlightening to have a conversation where spouses, partners, and other family members try to understand each other’s experience and perspective on what is happening. Like the old saying suggests, put yourselves in each other’s shoes and imagine what it must be like for them. Step out of your own experience for a moment and ask yourself, "What is this like for my spouse to lose his/her vision," or "What is it like for my caregiving spouse to put up with me and take on more responsibilities?" Empathy for each other will lead to open communication, greater understanding, and cooperation.
Additional Resources
This link offers publications including a free Caregiver support manual.
Living Well with Low Vision—This website provides lots of information on living with vision loss.
Low Vision Focus@Hadley—Find out about this program for older adults that promotes independence at home by sharing practical ways to address daily living skills made difficult by vision loss.