In celebration of National Family Caregivers Month, the Turner Syndrome Foundation (TSF) would like to recognize the significance of and immense work caregivers do for people with chronic conditions like Turner syndrome (TS). We will meet Lori, whose adult child Julie has TS and other cognitive disabilities, and learn about her caregiving journey.
National Family Caregivers Month
November is National Family Caregivers Month, a time to honor and celebrate the work that caregivers do on behalf of family and friends. There is still a lot more that can and should be done to support family caregivers. Their contributions are usually unpaid but are critical to helping those with chronic conditions like TS.
For individuals with TS, this month is a time to appreciate our caregivers. It is a time to advocate for ways to improve their wellness and connect with people to hear their stories and understand why we need them.
The Importance of Family Caregivers
Families are a significant help in enabling people with TS thrive. We all rely on each other in this world, and if we don’t help our
family caregivers, it will be hard for them to keep giving. One way can do this is by advocating for increased awareness and help, especially for middle-aged family caregivers. Middle age can be a significantly challenging time in life. Many are caring for their older children during a difficult transitional period in their lives, such as college, as well as their elderly parents, who may be ill.
Having a child with a chronic illness and also being middle-aged means more tasks, and it can become overwhelming. Providing a listening ear to connect with middle-aged caregivers is a way to show empathy for their stories and ultimately find ways to support them, too.
If you are a caregiver, here are some tips to make the task a little less stressful from The Senior List:
- Learn to ask for and accept help.
- Find ways to care for yourself in order to stay strong to care for your loved one.
- Shift your thinking into new patterns of doing family celebrations that make room for the reality of your caregiving.
- Pat yourself on the back—or take yourself out to lunch, a movie, some kind of treat—as a way of saying thanks. You deserve it!
Lori Kobular, a key TSF volunteer and Board Trustee, is an example of an amazing caregiver. What is especially inspiring about Lori is the love that she has for her daughter and her amazing ability to remain strong for her during challenging times.
Below you will read how, from the moment her daughter Julie was born, she made the decision that she was going to jump in the boat with her and would not get out until Julie did. Despite being told that her daughter would face serious challenges due to TS and other medical issues, she trusted that Julie would be okay. Individuals with any kind of chronic condition can be prone to negative feelings and thoughts, but it is with the strong optimism of their supporters that fierce warriors are made.
Julie's Birth & TS Diagnosis
My daughter Julie, now 32, was born via emergency C-section because my platelet count had dropped very low. Julie’s Apgar score (which measures color, heart rate, reflexes, muscle tone, and respiration) was only a 6 out of 10. As first-time parents, we were quite upset that Julie was spitting up through her nose at her feedings. Unbeknownst to us at the time, Julie was born with a high-arched palate, which made bottle feeding difficult for her.
At one of Julie’s feedings, the formula came up through her nose, and she aspirated. She was immediately put into the Neonatal Intensive Care Unit (NICU) and remained there for two weeks. It was with genetic testing done at birth that Julie was diagnosed with TS. Julie also had many ear infections that would turn into sinus infections, and she took many antibiotics. She also had several operations to put tubes in her ears. When she was five years old, her ear doctor recommended she have her tonsils and adenoids removed.
What was supposed to be an overnight hospital stay turned into a week-long stay for the three of us. Julie was in so much pain and was refusing to eat or drink anything, so they kept increasing her pain medication. Eventually, her kidneys started to shut down.
They reduced her medication, but she was still very congested, so I asked for the respiratory specialist to see her. I was afraid her congestion would turn into pneumonia. They gave me rubber paddles to pound on her back to get the mucus up, and that worked.
Julie's Childhood & Schooling
Julie also faced some tough battles in school but ultimately got through these challenges with the support of her mother. She received both ADHD and autism diagnoses, and she remained at the Children’s Center of Monmouth County. She attended that school until she was 16 years old, when they recommended she would be better off at the Bancroft Neurohealth System.
The Toughest Decision
I always wanted Julie to live with us; I never wanted her to live in a facility or a group home. But one day, she came home very upset, and the minute she walked into the house, she bit my arm and wouldn’t let go. My younger daughter, Jenna, jumped on her back to get her to stop biting me. At that moment, I made the decision that it was time for Julie to go to Bancroft, a live-in facility that deals with problematic behaviors. I made that decision because I felt strongly that it was my job to protect my children; it upset me very much that Jenna had to step in to get Julie to stop biting me.
It was not an easy decision, by any means. I felt a lot of guilt about having Julie go live at Bancroft. But they were able to do much more than we could.. They monitored her reactions to different medications and got her on the proper medications and dosages. They also had the luxury of having one-on-one staff when she first got there. So, if Julie refused to get dressed, they were able to sit there with her until she decided to do it. I couldn’t
do that, having another child who needed to be taken to school, medical appointments, and play dates.
The Best Decision for Us
Julie finished her schooling at Bancroft and continues to live in a group home within the Bancroft Community. She will never be
able to live on her own; she will always have to live in a group home. But she is a happy woman. Because we never started estrogen therapy for Julie, at 31 she developed osteoporosis, as if she were a 70-year-old woman.
Julie also suffers from Irritable Bowel Syndrome and is now on a gluten-free diet, which helps a little. She has had numerous tests done to see if she has Crohn’s disease or celiac disease, but the results always come back negative. She also has high blood pressure and will most likely be on medication for that for life.
In the long run, moving Julie to Bancroft was the best thing for our family. Julie’s medications got under control, and she learned how to do things for herself that she wouldn’t have here at home. Living in a group home with other individuals has also helped Julie in that she isn’t the only one dropping things or spilling things. At the group home, she is like the other ladies.
All in all, Julie is a very happy person. She has moments when she gets angry and has difficulty controlling her temper. But she loves everyone and never has a bad word to say about anyone. When you take her some place, she enjoys it immensely, and it is pure joy! Julie appreciates anything you do for her.
She has a great sense of humor, remembers anything anyone ever tells her, and is a true social butterfly (pun intended!). Our relationship has become much stronger, and we enjoy going shopping, out to eat, or to the movies together. Now, when we are together, it is pure joy to be with Julie.
Caring for the Caregivers
Lori’s story exemplifies that, although children, adolescents, and young adults may not always show or verbalize it, they really do need caregivers. People with TS, in particular, need to believe in themselves and know that, no matter what challenges they face, they will be okay.
Lori worked tirelessly to get the medical care and academic services Julie needed. She ultimately did what was best for her daughter and her family, even though it was not easy. Like many caregivers in the TS community, Lori has fiercely advocated for her daughter. Lori’s story inspires us at TSF, and we hope you are inspired by her strength, as well.
During the month of November and all year, let’s be sure to thank our family caregivers for all they do. There are many caregivers out there like Lori who go above and beyond for their children.
If you are a caretaker, TSF offers the 24/7 Caregivers Group, which provides support and resources for individuals taking care of loved ones with TS.
Written by Lori Kobular, TSF Board Trustee and volunteer, and Caroline Walsh, volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2022