One Caregiver’s Story: Finding Support for Life’s Changes
"The title is perfect: care consultant. They actually consult with me and empower me to make decisions that I don’t want to just pass off to someone else."
Two and a half years ago, Joyce Lee’s life turned upside down when she received a call from the fire department in her mother’s hometown in Maryland. She took the call while driving on I-285 and listened as the man described how her mother had left a pan of bacon cooking on the stove and forgotten about it until smoke was billowing out of her house.
Although her mother had been showing signs of forgetfulness that year, this was the moment that Joyce realized the severity of the situation. She immediately began searching for caregiver resources to help with what she began to understand was the beginning of dementia.
This week, I had the opportunity to chat with Joyce, a local woman who works full-time as a donor relations specialist and has now also served as a caregiver for her mother for over two years.
HCD: How did you become a caregiver?
JL: About three years ago, my mom started showing signs of forgetfulness. Then, two and a half years ago I got that phone call from the fire department. At that time, my mom lived in Maryland, and all six of my siblings lived around her.
My first choice, of course, was to see if any of my siblings could do the caregiving. None of them felt that they were able to take it on, so my husband and I drove to Maryland to pick her up. We just left her furniture and brought her to Georgia.
HCD: What did you turn to first for help as a caregiver?
JL: When I brought her here, I turned to the Alzheimer’s Association. I didn’t know if she had Alzheimer’s disease or another form of dementia, but I typed her symptoms into a search engine and this showed up. They were able to recommend some general local information. They were able to point me in the direction of where to call, but they were limited in what they could do.
One day to the next, you never know when that next progression of the disease is going to take place.
HCD: How did you find out about empowerline’s Benjamin Rose Institute (BRI) Care Consultation?
JL: I believe that I was referred to BRI Care Consultation through the Governor’s Office of Consumer Affairs. I worked with two care consultation counselors at Atlanta Regional Commission’s empowerline, the more recent of which is Amber Meadows. Although I’ve only known Amber for a short time, she has provided me with resources that no one else was listing.
HCD: What did you get from BRI Care Consultation that you didn’t get elsewhere?
JL: The counselors pointed me towards organizations such as the Laona M. Kitchen (LMK) Foundation and Seth Rogan’s Hilarity for Charity. I was able to connect with LMK to get a voucher for respite. Hilarity for Charity gives grants to three caregivers nationwide each year. I wrote an essay to earn that grant.
You all are incredible. With the prevalence of Alzheimer’s and dementia these days, I’m always running into people dealing with it, and I refer them to you all. I tell them to call this number [1-844-557‑1686]!
HCD: What did you like best about your experience with Care Consultation?
JL: I liked the regular, routine phone calls within care consultation. That stood out. Before, I called every number—everything in the state. This time, I was given an action plan, and it was reasonable. Plus, I always felt that I was encouraged. A lot of people recommended that I just put her in a nursing home. Your organization agreed to support me on any road I chose!
The title is perfect: care consultant. They actually consult with me and empower me to make decisions that I don’t want to just pass off to someone else. They never said to me, “If I were you, I wouldn’t do this.” They are always supportive and that’s the way it should be.
I want to brag on my counselors. The information they gave me was meaningful, useful, hands on, and tangible.
HCD: What’s missing in your life as a caregiver?
JL: I would say respite and financial help. As a caregiver, you sacrifice your time and your resources. LMK is the only organization that helps me financially. It’s hard to accomplish everything – one year we spent almost $100,000. The first year, we sold her home and her car. After that, she ran out of money, and it came out of our funds. It can drain you of money and rest, but she’s someone who we love; we shouldn’t have to make those choices.
It is so sad because if I were to put her in the nursing home, then we’d get Medicaid, but because we choose to keep her in our community, there’s no help. I feel like we’re incentivized to put them in a facility, but I believe keeping her in the community is more cost effective for everyone, including the state! If she were a newborn baby, our society would do anything to help keep her at home. Why can’t we take care of the elderly in the same way?
HCD: What else would you like to see moving forward in the world of caregiving?
JL: I have gone through so many [hired] caregivers. I don’t have any official training, but I feel like I’ve learned what the certified nursing assistants (CNAs) do because I’ve walked alongside them for so long. For example, if I had to help mom get out of the bed, we could do it within 3 seconds.
I’ve had a few CNAs who have admitted that they haven’t done any Alzheimer’s or dementia training, other than watching a video at their agency. Sometimes, they don’t seem familiar at all. Not to mention that there are people who steal from or prey upon the elderly.
Once, my mom had to go to the hospital for several days for dehydration. Social services recommended that this woman come and talk to us in our room about taking mom to rehab. It turns out, the person was a sales representative whose company earned several thousand dollars if they convinced us to place her in rehab.
Even in the hospital, I had to really fight to not send her to a rehab center. There was very strong sales pressure. I met people at the cafeteria, and as we struck up conversation, I learned they were having the same experience.
I wish that Congress would be more proactive about legislation that helps the aging and the vulnerable. I’ve called representatives and senators to inquire about this, and they just offer a nonchalant response like “no, nothing out there right now. Call us next year!” There needs to be more movement in that direction.
If you are interested in learning more about BRI-Care Consultation, call 1-844-557-1686 or email firstname.lastname@example.org. You can also contact empowerline at (404) 463-3333 with other questions.