Audrey Demmitt RN is a  VisionAware peer advisor after a long career helping others who also live with low vision and blindness.

Here is her companion post on Elder Abuse.

There are an alarming number  of older adults who are aging with vision loss. Your loved one may be one of them and most certainly will have some unique needs. Unfortunately, social and rehabilitation agencies are often under-funded and overburdened, making it difficult to meet the needs of this growing population for services that could enable them to age in the place of their choice, usually at home in safety, with independence and dignity.

Elder Services Lack Awareness of Vision Loss Issues

Furthermore, there is a lack of knowledge and awareness of vision related issues among the allied professions which serve older adults. Older adults with low vision or severe vision loss will need special support and accommodations to remain healthy, engaged, and safe in their community. Many will struggle to manage daily tasks like shopping, cooking, reading mail, paying bills, and safely taking their medications. Some seniors with vision loss are ushered off to assisted living facilities prematurely for fear they can no longer take care of themselves. If assisted living becomes the best option for a loved one with vision loss, families soon discover many facilities are ill-equipped and ill-informed to meet these residents’ special needs.

Caregivers Must Find Their Own Way

All of this means more family caregivers are shouldering more responsibilities and will have to find their own way when it comes to securing what their loved ones need. Hopefully you will find helpful support and resources here if you are currently in this challenging role.

 

Ten Tips for Family Caregivers (excerpted from Caregiver Action Network)

1. Seek support from services for the blind, services for aging adults 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 on-line. There are services and support groups available for those with vision loss and they can be found using VisionAware’s national directory of services. There are also support groups for caregivers. Caregiver Action Network (CAN) offers on-line 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 tasks which are your priority, 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 National Academy of Elder Law Attorneys at naela.org, 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.

Resources for Family Caregivers

Caregiver Action Network or CAN  Support group forum, videos, tip sheets and resources on all aspects of caregiving.

The ADA National Network – information, guidance and training on the Americans with Disabilities Act

National Association of Area Agencies on Aging – find your local Area Agency on Aging to learn about available aging services and resources.

Eldercare Locator to find local resources for older adults and their families by searching for your zip code and specific topics.

Caring.com — the leading online destination for information, advice, tools, and support for caregivers.

Care.com – on-line marketplace to hire a caregiver or to be a caregiver for children, adults, seniors, home, pets. Find day care, respite care, light housekeepers, help with errands and other services in your area.

RX Assist — offers a comprehensive database of patient prescription assistance programs to help manange medication costs.

Rides in Sight– a database of transportation options for seniors and people with disabilities.

GoGoGrandparent – fast, affordable senior transportation with 24/7 service and tools for family members.

ScriptAbility – helps manage medications by providing talking or large-print prescription labels for people with vision loss.

Medicare Rights Center — or (800) 333-4114 a consumer-friendly website and call center to help you better understand what Medicare covers and doesn’t, and answer your specific questions.

Patient Advocate Foundation — provides mediation and arbitration services to remove obstacles to healthcare including medical debt crisis, and insurance access issues.

Feeding America – U.S. hunger relief organization; food bank members help provide low-income individuals and families with the fuel to survive, addressing food insecurity, scarcity and hunger.

Food and Nutrition Service — Supplemental Nutrition Assistance Program (SNAP/food stamps) and other food assistance programs.

Meals on Wheels — national organization composed of local, community-based Senior Nutrition Programs in all 50 U.S. states, as well as the U.S. Territories.

Covia Well Connected – a “senior center without walls” for older adults who are homebound or isolated. Provides a program of entertainment, learning, community, and support groups over the phone or computer and FREE. Also, in Spanish.

National Respite Locator – find programs and providers of respite care in your area.

VisionAware – find information and services for older adults with vision loss.