Caregivers: Where to Find the Support You Need

“It is not how much you do, but how much love you put into the doing.” – Mother Teresa

Did you know that presently there are over 63 million caregivers in the United States1? These folks care for sick or elderly adults with no training on how to care for them or needed support; some with medically complex issues. Just guided by their love and determination. Some are spouses, daughters, sons, family members, or caring friends. I was one of them.

You don’t sign up to be a caregiver. You just step up, embrace it and move forward and do the best you can. I cared for my mom for several years. For the last two years, she was bedbound and completely dependent on me. I gradually moved into the role of caregiver. It started with just preparing her breakfast, or helping her get in and out of the shower, to helping with the activities of daily living — bathing, dressing, personal hygiene, and transfer/mobility. I did not know what to expect or what I needed to do. All I knew was she needed me, and I was going to be there for her. She wanted to be cared for at home, and I kept my word.

I was fortunate her doctor was just a text away if I had questions, and she had good insurance; but the home health agency was another story. Quickly, I learned that people have a tendency to dismiss a person based on their age. I came across this more times than I care to remember. Some service providers would say to me, “Oh, well, she is 100…” Yeah, she was, and a centenarian with all her faculties until her last breath at 102.

At first, I turned to the home health agency provided by her insurance. The home health agency was more concerned with cutting back on services than with providing the services she earned and was entitled to. Then, I tried to hire a private home health aide (HHA) to help. It didn’t work either, and I went through several; they were all the same. They were rushing to get to the next person. The more people they saw, the more money they made, and at the end of the day that was all they were interested in. Their treatment of her was rough, and with her frail skin, she would end up with bruises on her forearms. That was not acceptable and ended quickly.

I was not aware of what services or agencies, if any, there were that offered the support we needed; and if she qualified. She did not have Medicaid; she did not meet the threshold for financial help. We relied on our savings account and her Social Security check. I quit my job and began freelancing as a writer to earn some income and stayed home to care for her 24/7.

Now, with time on my hands, I decided to share what I learned and collect information that might help future caregivers.

What I Discovered and Links for You

This is just the tip of the information iceberg of organizations and agencies that offer assistance. It’s just a start that can point you in the direction you might need to go. This information is meant to guide you to sources of information and assistance. Please verify whether the services meet your needs.

Where to Get Support

• The Eldercare Locator is a free public service of the U.S. Administration on Aging that helps older adults and their families find resources and services in their communities. Visit eldercare.acl.gov or call 800-677-1116 to speak with a specialist who can provide referrals and information for your area.
  

• The National Institute of Aging has a wealth of information on different topics. https://www.nia.nih.gov/health/caregiving  or call 800-222-2225
  

• AARP Family Caregiving great organization with comprehensive coverage of issues affecting caregivers. Includes information on resources that are free or at a reduced-cost. https://www.aarp.org/caregiving/ or call 877-333-5885 (for Spanish 888-971-2013)
  

• Family Caregiver Alliance for information, education and support groups in your area

  https://www.caregiver.org/?uri=/  or call 800-445-8106
  

• National Alliance for Caregiving is a coalition of national organizations focused on family caregiving issues. https://www.caregiving.org/  or call 202-918-1013
  

• Alzheimer’s Association. Information and support for people with Alzheimer’s disease and their caregivers. https://www.alz.org/   800-272-3900
  

• US Aging is another great source of information for caregivers. https://www.usaging.org/content.asp?contentid=427

Getting Paid as a Caregiver

If you are caring for a disabled person, you might be able get paid as a caregiver. Contact your state’s Medicaid office (https://www.medicaid.gov/about-us/where-can-people-get-help-medicaid-chip) for information.

Caring for a family member who is not eligible for Medicaid, then long-term care insurance might be an option. This link will take you to Administration for Community Living (ACL) an official U.S. government website. https://acl.gov/ltc/costs-and-who-pays/what-is-long-term-care-insurance

This link: https://www.usa.gov/disability-caregiver will take you to the USA GOV site that has several different options for you. I just highlighted a couple of them above. Remember, every state has different policies.

Also, check with your tax professional you might be able to claim the family member you are caring for on your tax return.

In closing, some friendly personal advice

• Don’t be afraid to ask for help.

• Pick up the phone and talk to a friend.

• Celebrate the milestones. Invite people over to the house. It is a great way to break up the routine for the both of you.

• Don’t forgot about YOU.

Being a full-time caregiver was never something I envisioned myself doing (I had never cared for another person), but I would not change a thing. It was a great gift life gave me to care for mom and share her last remaining years. I have some beautiful memories that I will treasure forever; and we had many good laughs.

I wish you strength, you can do it.

1 AARP