EPISODE 32 – Caregiving with Allison Jordan and Cheryl Todd – June 1, 2023
Real women, real stories. Allison and Cheryl share their stories of caregiving – of parents and children. They share the work it takes, the impact on their lives and address if and when a special needs trust could have helped their loved ones. Hear them and their insights into the daily life of a caregiver on the latest episode of the Vista Points podcast, Choose Your Path.
EPISODE 32 SCRIPT:
Greetings from our Middle Tennessee studio. Welcome to today’s Vista Points podcast, “Choose Your Path”, where the Vista Points’ staff are committed to improving the quality of life for people of any age, who are living with a physical, mental or intellectual disability.
I’m Bart, your podcast host. My role is to walk with you on this journey of discovering and using special needs trusts.
In case you’re new to our podcast, I invite you to refer to past episodes which are found on the Vista Points website and on YouTube. More information on these locations will be given at the end of this podcast.
Today’s podcast session I promise will be very interesting because it is full of real-life stories, straight from the heart. Our interview’s with two women who have served, or currently serve, as caregivers to family members. As you listen to their interview, please consider how a special needs trust, for their loved one, may have impacted their lives.
We welcome Allison Jordan and Cheryl Todd. Cheryl’s got kind of a frog in her throat. You know how it happens once in a while. So if she sounds horse, that’s not her normal style.
Go ahead, Cheryl. Talk to us.
Cheryl: Hello Bart. Good morning. Hope you are doing well today.
Bart: Hi, Allison. Can you talk?
Allison: Hi, Bart! Good morning. Thank you for this opportunity. I’m happy to be here as both a colleague and a caregiver.
Bart: Great. Today, we are talking about caregiving. I understand that both of you have taken care of loved ones in the past. Would you tell our listeners who you care for and a bit about your loved one? Cheryl, let’s start with you.
Cheryl: Well, most of my life I helped to take care of my mom. She had so many surgeries in and out of the hospital all my life. I had to take care of my younger sister since my mom was not able to. My dad had to keep working to pay the bills. So, he was not around very much. I also helped with taking care of my grandmother for several years who had grand mal seizures.
Bart: Allison, how about you?
Allison: Both my daughter, Bishop at age 9, and my son Warrick at 4 years old, were diagnosed in 2009. Bishop with a brain tumor, which caused multiple, physical needs, and Warrick with Autism. We were a two-income family suddenly going down to one income, so I could care for both children. It was a very difficult time for our family.
Bart: It sounds like. Well, I want to thank you, ladies. It sounds like your life stories are impactful. I know caregiving is a difficult job to do along with caring for yourself, for others, working and having your own life. Allison, I’ve heard a lot about your son, Warrick. Will you tell us a little more about him?
Allison: Sure. Warrick has both Autism and ADHD. He was put on an IEP for school due to his learning disabilities. On May 19th, he actually graduated high school. However, he is on an extended plan where he will continue his education and learning of job vocational skills until he is of the age of 22. Proudly, he has earned an honorary scholarship with Tennessee for performing over 100 hours of volunteer time in our town during his 4 years of high school.
Bart: Allison, Warrick sounds like such a lucky guy to have you as his caregiver and his mom! Will you tell us how you are involved in Warrick’s daily activities? How do you work with him in special events and volunteer activities? We’d also like to know a little more about Bishop.
Allison: Absolutely. Well, sadly, Bishop passed away in 2022. Um, it was very hard on us, especially for Warrick losing his sister and best friend. We were already playing baseball and basketball through our local Special Needs groups, including playing for the Special Olympics of Tennessee. We do continue to do this so Warrick could stay involved and enjoy his quality of life. In turn, we volunteer at fundraisers to raise awareness and funds to support those with disabilities.
Bart: Wow, I’m sorry for your loss of Bishop, Allison. I bet she was an amazing young woman and so strong to endure so much. I’m sure Warrick misses his sister. How do you keep Warrick involved in activities? What do you think Warrick enjoys the most out of all, of all the things he does?
Allison: Well, I don’t know all the things! In all honesty – WORK! Warrick has been learning job skills during his senior year along with a state mentor to teach him how to be independent and learn new job skills. He tells me that he enjoys his training and hopes to get a job in the near future.
Bart: You know, I think many young adults would enjoy all of the activities Warrick participates in. And as I said earlier, he’s a lucky guy!
Cheryl, in caring for your parents, did either of them have a hobby?
Cheryl: Uh, yes, Bart. While my mom lived in the nursing home for almost ten years, my dad had hobbies of building model scale homes the size of a kitchen table. He made his own furniture, landscapes, even hooked up the electrical lights in and outside of the homes. He did this to keep busy. But doing this and smelling the glue, he was not protected, did not wear a mask. He ended up with squamous cell carcinoma.
Bart: Wow, that’s horrible, Cheryl. But, it does sound like your dad was quite the craftsman! Did your mom have hobbies or like to do anything special with you or the family?
Cheryl: Yes, she did, Bart. My mom’s favorite thing to do ever was to cook wonderful meals for the entire family. Even the neighbors would smell her cooking and show up at their house. She was famous for her tamales.
Bart: I think I can smell them from here! You know, your mom sounds like a special person, Cheryl. Thank you for sharing these stories with our listeners. Now, I’d like to turn our interview to both of you. Caregiving can be so stressful and tiring. What stands out about caregiving? Allison, would you start?
Allison: Well, it’s like hitting a brick wall. You have your life plans in motion, but when it comes to caregiving, especially unexpectedly, your entire life comes to a halt. Then it takes its course in a different direction. It’s very stressful. But, you do what it takes to love, care and show compassion to those who cannot independently take care of themselves. It actually fills my heart knowing that my son is happy and doing the best he can with the support of family and friends.
Bart: Thanks, Allison. Cheryl?
Cheryl: Yeah. I had always felt it was my responsibility to take care of everyone, and to make sure they were safe. Taking care of anyone is time consuming, even puts a strain on your immediate family. Being a caregiver can be exhausting, and at times it would even make me sick. But you keep going because it’s the right thing to do. It is rewarding to know that all I did, all I could do to make their life better.
Bart: You’ve both have given our listeners insight into what it takes to be a caregiver, and I thank you. I know from personal experience what my caregiver goes through, at times. You know, I can be a handful when my Alzheimer’s kicks in.
Cheryl and Allison, do you think a special needs trust for your family members could have made a difference in their lives?
Cheryl, you first.
Cheryl: Yes. Sorry. Yeah, I think that if my parents had put their money into a special needs trust, they could have qualified for government benefits, like SSI and Medicaid, to cover their healthcare needs and their day-to-day needs. We could have used the money in the special needs trust to pay for nonmedical care to help care for my parents. This would have given me more opportunity to have some more time for myself.
Allison: I think a third-party supplemental needs trust would be beneficial to my son. We could put gifted money into the trust for Warrick and have it here for him for when he needs it. I know many families that have listed this type of trust in their wills as I have done so myself. This has released my fear of what will happen to Warrick financially when I’m gone. Funds will go directly to the third-party special needs trust where I know a trustee will oversee his account to help him with his daily living expenses when I am gone.
Bart: Special needs trusts DO give the family “peace of mind” knowing their loved one has his or her healthcare needs covered with government benefits and the money is in special needs trust can only be used for the beneficiary’s benefit. Oh, by the way, the term “beneficiary” is the person living with the disability.
Allison and Cheryl, do you have any closing words of wisdom for our listeners? Let’s start with you, Allison?
Allison: Yes, definitely take the first step and do your research. Everyone has different situations. You would want to know what trust suits your loved one best. If you do not set up a trust now, complete your will if you have not done so already. Your attorney will know the verbiage needed to protect the beneficiary after you pass.
Cheryl: Yeah. I wished at the time that I could have put my parents’ money into a trust, it would have helped them protect their benefits while helping pay for a caregiver so I could have more time with my family. I believe having a trust not only protects the beneficiaries, but also helps caregivers who are family members.
Bart: Thank you, ladies. You have been so kind to share your stories, your struggles, and your advice. I appreciate your honesty and I’m confident our listeners will gain some insight into caregiving, from what you have shared.
You know, not only are these ladies experienced caregivers, but also team members at Vista Points. That’s probably why they know so much about special needs trusts.
Over the last year, this podcast has grown to reach 5,000 people and has become a beneficial resource for many.
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You know, to talk with a Vista Points staff member, including the two you’ve just listened to today, you can call the office at 888-422-4076. That number again is 888-422-4076.
Enjoy your day with your loved one. Come back for more or look into past episodes of Choose Your Path. Regardless of where you find us, we walk beside you on your path. I look forward to sharing more information with you on how special needs trusts can be of benefit to anyone living with a disability.