Caregivers SPEAK OUT!
Heather Sivori Floyd (caregiver for her son, TJ)
Donna O’Donnell Figurski
1. What is your name? (last name optional)
Heather Sivori Floyd
2. Where do you live? (city and/or state and/or country) Email? (optional)
Oldham County, Kentucky, USA
3. What is the brain-injury survivor’s relationship to you?
He (TJ) is my son.
How old was the survivor when he/she had the brain injury?
TJ was 7 years old.
What caused your survivor’s brain injury?
TJ was riding his bicycle when he wrecked into the back of his brother. He flipped over the handle bars and hit his head on the concrete. He went to “sleep” and never woke up until days after his emergency open brain surgery.
4. On what date did you begin care for your brain-injury survivor?
April 21, 2010
Were you the main caregiver?
Are you now?
How old were you when you began care?
Age stinks. I’d rather not discuss it. LOL!
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
Yes – my three other children. I was also pregnant at the time.
6. Were you employed at the time of your survivor’s brain injury?
If so, were you able to continue working?
Yes – part time from home.
7. Did you have any help?
My mother-in-law moved in to help with my other children so I could care full-time for TJ with his therapy and doctors.
If so, what kind and for how long?
Well, she is still here.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
9. Was your survivor in a coma?
I’m not sure of the medical term, but he was unresponsive until several days after his brain surgery.
If so, what did you do during that time?
I slept beside TJ in a chair. I was three months pregnant and heartbroken at the fear of the unknown. What was it they called it? . . . Ah yes, “the new normal.” I was trying to figure out what that meant. You don’t actually “get it” until years later.
10. Did your survivor have rehab?
If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?
Physical, occupational, and speech therapies; also, hippotherapy (the use of horseback riding to improve balance, coordination, and strength)
How long was the rehab?
TJ still goes to therapy.
Where were you when your survivor was getting therapy?
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Everything. TJ’s brain bleed damaged the whole left side of his brain and parts of the right. He was left with severe impairments, specifically in speech, language, memory, and cognitive function. He has safety issues. Because of attention, safety, and balance issues, he has trouble walking without hands-on help constantly. He also has memory problems, speech problems, vision problems, physical issues from having hemiparesis (weakness on one side), and a lot more.
12. How has your life changed since you became a caregiver?
Things that mattered to me prior his accident are non-issues to me now. I often times feel I can talk with doctors and therapists better than I can with most people my age. It can be lonely, difficult, and frustrating at times to find common connectors in my personal relationships with friends and family. Some weeks are packed full of appointments. I’m drinking so much coffee I think my system will crash. Just this past week, I knocked out four appointments in one day. The most I’ve done in one day has been seven.
Is it better?
I would say yes – my life is better. Even though this is the most challenging task of my life, my son is innocent, happy, and laughs a lot. I believe having the privilege to care for my child, who is special needs, has been the most rewarding love one can experience. The impact special-needs children make are life-long. You learn so much through them in how they view the world.
Is it worse?
No parent ever wants this for his or her child. That being said, my life is better because of the profound true joy my son has brought me. The worst part, I would say, is having struggles that are hard to overcome. Watching him struggle is hard. I do whatever I can to help him when this happens. Also, the stress of future planning is scary and overwhelming.
13. What do you miss the most from pre-brain-injury life?
Our conversations. Most of the time, our conversations now are basic – food, eat, play a game, etc. I miss those conversations with my child that went beyond basic needs.
14. What do you enjoy most in post-brain-injury life?
Oh gosh, a child like TJ changes you in a profound way. The love you have in your heart for your child and others like him or her is something that is hard to put into words. I want to protect all of them forever. The world is full of evil people who would take advantage. I also enjoy trying to help others – to make it easier for the family who comes after us. There will always be another family. I’ve also learned to let the little things slide because, at the end of the day, they are just that – little.
15. What do you like least about brain injury?
Everything. It’s unrelenting and nasty. It takes a lot and rarely gives anything back.
16. Has anything helped you to accept your survivor’s brain injury?
Yes – TJ is happy. It is hard to justify my being sad or my crying all the time when he is happy. He lives in the now – not for tomorrow or the day before.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Yes – especially my personal friendships and my relationships with family. I think we are on different paths in life now. While they talk of work and social events, I am constantly thinking What can we do to make it better for TJ and others going through this? My closest friends are now the caregivers and survivors I’ve met locally. We work together locally to make a positive change for the brain-injury community. I also work with an amazing team of ladies who help me run two support-groups for survivors and caregivers. I started my first one seven years ago. I was scared after TJ’s brain injury, and I needed to know I was not alone. I needed hope. The groups grew to over 30,000, and the rest is history. The friendship we have is unbreakable. Shout-out to my amazing admins and friends: Melissa, Shauna, Margie, Mary, Michael, Eddie, and Alex. Love you all! We’ve met many who have inspired us in this journey.
18. Has your social life been altered or changed and, if so, how?
Um, what social life?! Seriously, I have no social life. It’s too hard to connect with others.
19. What are your plans?
My #1 plan is finding the best long-term situation for TJ that will ensure the best care he can have when we can no longer do so. Personally, I also plan to continue making a difference locally. We have several projects we are working on, and I have some more ideas to help. I ALWAYS have an idea. I’m always thinking big. Nothing brings me greater joy than helping others. It is important for families to know they aren’t alone and that people care enough to try and make it better. I try to do my part because of my son and the many we have met.
What do you expect/hope to be doing ten years from now?
I hope to still be laughing and loving the small joys in life with TJ. Hopefully, we will have made a big impact locally and beyond for the brain-injury community.
20. What advice would you offer other caregivers of brain-injury survivors?
Never give up. Let the small things go. Love deeply, and give your all. If you don’t, one day you will wish you had. Be the voice for your loved one. Never let “no” be an obstacle; there is always a way. If the door closes, kick it open. Most importantly, hang on when the days are hard and you feel you cannot go on. You can, and your survivor needs you to. Connect with other caregivers so you don’t feel like you walk this path alone – because you don’t. There are many who walk it with you daily
Do you have any other comments that you would like to add?
I think I’ve said what’s important for caregivers to know.
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