Caregivers wear short leashes. As our loved ones’ conditions deteriorate, we caregivers find it more and more difficult to leave home for any length of time. Hiring a companion or aide helps, but the cost may limit our “free” hours; hours for errands or just to rejuvenate. Most communities have support groups, but some caregivers may not be able to attend the meetings.
Fortunately, there are Facebook caregiver groups that give support and understanding to caregivers staying at home. There comes a point, however, when that is not enough. Caregivers need knowledge and concrete tools to be effective in their roles.
Since I have been blogging, my friends bring me resources they believe will be helpful. My friend Pat, a fellow nurse and one-time caregiver for her mother, brought me an article she found in Brain Life Magazine, Dec 2019/Jan 2020 issue titled “How Caregivers Can Advocate for Loved Ones” by Paul Wynn. He included in his article a list of on-line resources. I checked them out and added one of my own.
- https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program is an important resource for all caregivers. Click on Program Areas, and you will find a wide range of topics, from Alzheimer’s Disease and Dementia, health and wellness topics, preventing abuse, resources for caregivers, and much more. Make yourself a pot to tea and settle in. There’s much to read at this site.
- https://www.caregiveraction.org/ (Caregiver Action Network) is a very comprehensive site for new caregivers, family members who live out of town, or who work. It includes instructional videos, and information caregivers need to know about specific diseases. The site provides access to a free help desk that is manned by experts who will answer your phone call.
- https://eldercare.acl.gov/Public/Index.aspx (Eldercare Locator) provides links to information about agencies in your area.
- https://www.caregiver.org/about-family-caregiver-alliance-fca (Family Caregiver Alliance). The Alliance’s mission is “to improve quality of life for family caregivers and the people who receive their care.” The best part of the site is falls under the Caregiver Education link, but skip The Learning Center (your first choice on the drop-down menu – unless you read Korean or want to download a file). The remaining selections are very helpful. I like the disease specific education it offers, as well as the instructive videos.The Family Care Navigator provides access to information about private and public services in New York.
- https://www.caregiving.org/ (National Health Alliance for Caregivers) is “dedicated to improving quality of life for friends and family caregivers, and those in their care, by advancing research, advocacy, and innovation.” Under the Research tab, you will find information about irritable bowel disease (IBD) and caregivers that fall into “the Sandwich Generation” category. Additional help for caregivers is listed under the Resources tab, and help for managing medication cost is under ExtraHelp4Rx tab.
- https://www.nia.nih.gov/health/caregiving (National Institute on Aging) This site has a wealth of health information, literally from A to Z. A terrific resource for caregivers, it includes information on long term care, advance care planning, long distance caregiving, respite care, and a host of other topics.
- https://www.aarp.org/caregiving/ This AARP site is full of valuable information about all things related to caregiving. It does cover some topics I did not see elsewhere, such as how to hire a caregiver (hire your own or go through an agency), and mobility friendly car accessories. It has an excellent area resource locator as well.
- https://www.medicaidplanningassistance.org/medicaid-planning/ This one is my pick because my office dealt with home care programs funded by Medicaid, so I had to have a working knowledge about Medicaid eligibility and application. People of various income levels can qualify for Medicaid, depending the program they need. Do not assume, because you are “middle-class” that Medicaid is out of the question for your loved one. Since there is a 5-year look back period (to see where the person’s finances are and have been), transferring assets can present problems down the line. It is good to be fore-warned about some financial actions. I suggested you brew a pot of tea for the first website. This one calls for a pot of high-test coffee, but well worth it — literally.