Family and Caregivers

If someone near to you has been diagnosed with AMD, it affects you as well as that person. Whatever your relationship, you will want to offer help and identify ways to make both of your lives easier.

  • You can read all about macular degeneration as a disease, but what is it like to HAVE macular degeneration? How does your Dad see a shiny dime on the floor, but can’t recognize his lifelong friend?  How will Mom fix her meals and take her medications if she can no longer read labels? You want to help, but how and how much? Thinking and talking openly about these challenges is helpful.  Keeping positive is also essential. 

At the Time of Diagnosis

  • Hearing that you have AMD can be a shock. Perhaps your parent is confused by the diagnosis and doesn’t understand the treatment options.  Your friend may be in denial. He may be in a panic because he believes he will go blind.  She may wonder if she will need to give up activities she loves.  Accompany your relative to doctors’ appointments, or arrange for another caregiver to attend.  You might hear something that you can help to explain later, or you can ask questions that your parent may not think about.
  • It takes a while for the diagnosis to sink in. What happens after that is a very individual thing. Some people become depressed and feel like giving up. Others kick into high gear immediately, doing research, looking up treatments, and investigating vision rehabilitation.
  • You can help your loved one deal with this in many ways. It’s okay to ask “How can I help?” It’s okay to gather and share information.  Be guided by what you already know about the person.  Some people appreciate a lot of help; others want to take care of everything themselves.

Know When to Help

  • You may find out about devices and gadgets that can make life easier.  Some devices may cost thousands of dollars.  Don’t invest in expensive technology until your family member has met with a low vision specialist who can evaluate if the device is the right one and will provide the best vision assistance possible. 
  • You can present the information or make suggestions, but take action only when your family member is ready.  Your family member may not be interested in technology.  Watch for encouraging signs and then share what you have learned.
  • Getting your family member to talk about frustrations is helpful.  Research has shown that people with AMD who participate in support groups or self-help programs do much better than those who ‘go it alone’.  You can often find a local support group by calling hospitals, eye clinics or senior centers. If there are no services locally, perhaps your family member can join an ‘on-line’ support group and learn that feelings of frustration are not unique.  Expanding social networks by joining church groups, clubs, sports and other activities is a deterrent to isolation and depression.  Finding new volunteer experiences also keep up the connection to the outside world.
  • Low vision rehabilitation offers very useful tips and training for those with AMD.  Ask your doctor for a referral which will likely be covered by your insurance plan. 
  • State Services for the Blind may offer daily living skills classes for those with AMD.  At the county or regional level, there are likely resources to provide transportation, and in many communities there are places like senior centers and private organizations that offer helpful assistance.

 

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