four individuals talking around table  

by Audrey Demmitt, R.N., VisionAware Support Group Advisor

1. Seek support from services for the blind, services for seniors and  from other caregivers.  Ask the care receiver what they need and want in the way of support and services.  You are not alone in this! Find support in your community and online. There are services and support groups available for those with vision loss and can be found using VisionAware’s national directory of services.  There are also support groups for caregivers. Caregiver Action Network (CAN) offers online support groups, informative videos, message boards, a caregiver toolkit and more.

2. Take care of your own health so you can be strong enough to care for your loved one. Find time to keep your immunizations, physicals, eye and dental exams up to date. Make special efforts to meet your own needs for balanced nutrition, exercise, recreation, stress management and sleep. You are more prone to illness and depression as a caregiver.

3. Build a team of caregivers. Be sure to involve your care receiver as the team captain when they can participate. You do not have to do everything yourself so ask for help and accept offers of help.  You may have to delegate tasks to family members and service providers. Be specific about what people can do to help. The CAN suggests you:

  • Make a list of what needs to be done: personal care, financial and medical paperwork, lawn care, shopping, medications and treatments, meals, transportation.
  • Make a list of what you are worried about: emergencies, finances, balancing work and family and your own health.
  • Make a list of what tasks are your priorities, things you want to do or are best at doing, things you don’t like doing, things that need urgent attention.
  • Now share the lists with others-family, friends, neighbors, clergy, doctor, or a counselor to develop ideas, solutions and resources. This step will also be useful in recruiting help.

4. Learn how to communicate effectively with doctors and service providers. The CAN makes the following important points:

  • Establish presence and rapport: you need a strong connection with the care team.
  • Participate actively: identify the purpose of the visit and prepare questions ahead of time. Keep a notebook for recording information. Ask your questions and be an assertive advocate for your loved one. Whenever possible, allow the care receiver to express their wishes and concerns and encourage service providers to speak to them directly.
  • Build mutual understanding: be an active, careful listener. Clearly state goals, expectations and desired outcomes. Ask for clarification of instructions and information as needed.
  • Encourage collaboration: set goals together and work with the team to accomplish them.

5. Caregiving is demanding work so take respite breaks regularly. It allows you to adjust to the idea of sharing the care and prevents a crisis from developing. Respite needs to be part of the routine from the beginning, not something added on after an emergency. The CAN offers more information on using respite care.

6. Watch out for signs of depression and don’t delay getting professional help when you need it. It happens with caregivers. In a survey, one half of caregivers reported they experience depression. It is treatable so seek help from a mental health professional to restore balance through treatment, usually medications, talk therapy or both. Manage stress daily with ways you care for yourself like walks, music, reading, yoga, etc.

7. Be open to using technologies that can help you care for your loved one. There are innovative products designed to improve health, safety and communications; smartphone apps, medication organization tools, and fall alert systems to name a few. You can find what is available in the CAN Technology Navigator.

8. Organize your care receiver’s personal, legal, financial and medical information so it’s up to date and easy to find. Create a file or notebook; it can be paper or electronic or both. The CAN suggests including:

  • Care receiver’s medical history: diagnoses, physicians and other service providers contact Information, allergies, health history (surgeries, other medical conditions)
  • Medication list: prescription and non-prescription meds as well as supplements.
  • Insurance information: private medical insurance, prescription plan, Medicare/Medicaid, long-term care insurance, dental and vision Insurance
  • Legal documents: Living Will, durable power of attorney for health care (also known as a Health Care Proxy), power of attorney for finances, contact information for care receiver’s lawyer

9. Make sure the documents to manage your care receiver’s finances are in order. You can find an Elder Law Attorney through the National Academy of Elder Law Attorneys, a professional association of attorneys dedicated to providing quality legal services to seniors and people with special needs. The CAN provides a “Check List of Documents You’ll Need”  and “Questions to Ask Elder Law Attorney.”

10. Give yourself credit for doing the best you can. Celebrate your successes and accomplishments.

Tips adapted from “Ten Tips for Family Caregivers”, Caregiver Action Network.

Additional Information for Caregivers

Resource List for Caregivers