This month we spoke with Cori, a Care Coordinator at Wellthy, who has a background in eldercare and crisis management, as well as personal experience with long-term trauma from a car accident. Wellthy’s team of Care Coordinators and Advisers work directly with families to understand their care needs, create a care plan, prioritize tasks, and get things done on their behalf.
Cori is also a Moderator for Wellthy Community, a peer support network for Wellthy members allowing family caregivers to connect with each other online. For more information on Wellthy Community, check out this post.
What is your background in?
A little bit of everything. I started my career on a community action team with clients who had diagnoses related to mental health, like schizophrenia. I supported them with medication management, vocational needs, and housing. Then I transitioned to a residential center for traumatic brain injuries, which is ironically around the time that I helped my sister through her own traumatic brain injury as a result of a care accident. I also spent about seven years working at a skilled nursing facility in the dementia unit, short-term rehab, and discharge planning.
What is your personal caregiving story?
One night, my youngest sister (who was in her early 20s at the time) had finished working a night shift. On her drive home, she hit a patch of black ice and her car went off the road, got stuck between a tree and a telephone pole, and also hit a tree head-on. She consequently has a traumatic brain injury and was in a coma for about three months after the accident. When she woke up from the coma, she had to relearn everything: how to talk, how to walk, and who everyone was. We had to teach her what different colors were, how to use a fork, etc. She is amazing and has come a long way. Now she can hold down a job and drive again.
During that time, I was 25 years old and moved back in with my parents to help take care of her while they were both working and she needed 24/7 hands on care. I helped her regain some of her skills – it was so important that someone be there constantly working with her on cognition so then she could go into outpatient care.
At the same time, my other sister had just given birth to her son who needed open heart surgery. We had to divide and conquer who was visiting who and who was taking care of who. My sister and nephew are both doing great now.
What role did community resources play in your sister’s care?
She lived in Pennsylvania at the time, which has an amazing brain injury waiver program with all these different services available to help her. So, she was able to get all this in-home help and access to specialized centers. It’s not like that in every state, so it was a blessing that this happened in Pennsylvania. She also has Type 1 Diabetes, which automatically qualified her for Medicaid.
Had she not qualified for Medicaid, she would have gone to a nursing home instead of the rehab unit that she went to, because she was in a coma for so long and there wasn’t as much brain activity as they wanted to see. Without Medicaid and the accident happening in Pennsylvania, she likely would have been placed in a nursing home where she wouldn’t have gotten the aggressive treatment that helped her get where she is today.
The entire experience was very eye-opening about all the options available to help people. Often, people feel like there isn’t a lot out there, but if you look outside the box at which grants and waivers are available from different foundations and organizations, you can piece things together other than what is straightforwardly offered through insurance. It gave me a whole new perspective on how hard families have to fight to get these services. The system isn’t set up in a way that would be able to offer the level of care that a lot of people need in a mental or medical crisis.
What inspires you to work in caregiving?
In our work, you have to be scrappy. We have to search deeply and widely to find all the different ways that a family can receive help. What inspires me is that I have the ability to help families access programs they wouldn’t have otherwise known about.
There are so many programs out there that no one knows about. One example that always sticks out in my mind is the VA. There are so many different programs within the VA, but they aren’t advertised. So, unless you know what to ask for, or someone mentions it to you, you’re stuck in this very small box of what you’re able to get.
Why do you encourage families to plan ahead for care?
When I work with families, I try to probe them and get them thinking about what they can do now to help their future selves. When you don't have the big ticket items, like advanced directives, in place, it’s a nightmare on top of an already emotional time. The last things anyone wants to worry about during a medical crisis are logistics and legalities.
What advice would you give to a first-time caregiver?
Ask for as much help as possible, even if you don’t feel like you need it at the moment because things can change very quickly. Caregivers don’t realize how quickly the emotional toll of caring builds up. Put together your personal and care support networks right from the beginning.
So many agencies added a lot more social support opportunities because of COVID, which has been a really wonderful outcome. Instead of just being able to do things like help bathe your loved one, they can now take your loved one to the movies or to get their hair done. This really helps mitigate a lot of the social isolation that our parents or older loved ones tend to experience, which will have physical implications down the line.
What is a memorable Care Project that you worked on?
One of the first Care Projects I worked on was for a son whose mother was moving in with him because she could no longer take care of herself. We did so much for them – we organized respite care, coordinated meal deliveries, ordered medical supplies. . . We really built this support system for them. Sadly, the mother passed away and the Care Project was closed.
Later, the same son opened a Care Project about his father. The most memorable way we helped was we got the steering controls in his car modified so that he could use the accelerator with his hand. This is normally a pretty expensive modification to make, but we found multiple grants that he qualified for after being evaluated by his physical therapist. Then we found a center for independent living in Maryland that made the adjustments to his car and taught him how to use it. The father was so grateful for our support that he even wrote me a letter and read it out to me on the phone.
How does someone know if it’s time for them to work with Wellthy? When is a good time to ask for help?
The moment that you have questions that you can’t find the answer to, reach out to us. There’s so much that can come from the first phone call we have together always leaves the member feeling a lot lighter than when they got on the phone with us.
It’s an opportunity to talk about the situation at hand and let you know the different tasks we can help with. So even if you decide it’s too early to start working on these tasks, you know what help is available when the time is right.
However, caregivers come to us at every point in their caregiving journey. We understand that it’s not always possible to plan ahead and that’s okay.
Why is it important to talk about end of life wishes with your loved one?
Those conversations are hard to have. I think the resistance to discuss end of life wishes is a cultural and generational thing, but it’s becoming less taboo – you need to tell someone what you want! Would you want IV hydration? Would you want to be tube-fed? A lot of people automatically say they want everything done to preserve their life, but the more you talk with them about it, the more they say, ‘No, no, I don’t want that.’ Getting wishes written down legally and proactively is one of the best things you can do. The last thing you want is to be making these decisions with your family members surrounding your loved one’s hospital bed, when no one is in a good mental state.
That’s why I love being an end of life doula. It gives me the opportunity to honor individuals’ and families’ wishes and support them as they take the next journey after life. I am honored to be able to be with those in their time of need, providing emotional support and education in a very complex time.
What is one thing you’d recommend families have Wellthy take off their plates?
Dealing with insurance and medical bills. These tasks are so daunting, and we have Care Advisers on our side who specialize in these areas. They have backgrounds in claims and know what to say and how to push and advocate from the financial side of things to make sure insurance claims get resolved. It’s not uncommon for the Care Advisers to make weekly calls and be the squeaky wheel for our members who don’t have time to do that.
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