Caregivers SPEAK OUT! – Karie Collins
Donna O’Donnell Figurski
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country) Email? (optional)
Green River, Wyoming, USA email@example.com
3. What is the TBI survivor’s relationship to you?
The TBI survivor is my husband, Danny.
How old was the survivor when he/she had the TBI?
He was 50.
What caused your survivor’s TBI?
Danny was in a golf cart accident. The foursome he was in had finished golfing, and they were racing each other back to the truck. The wind blew the driver’s hat off, and the driver made a sharp U Turn to go get it. Danny was the passenger. He hit his head on the cart and fell out. Danny landed on his feet, but he instantly fell face-first onto the pavement. They had been drinking all day.
4. On what date did you begin care for your TBI survivor?
Danny’s accident was on August 16, 2014. He was taken to our local hospital by ambulance. He was then airlifted to Salt Lake City, Utah. He came home from the hospital/rehab on September 24. I was with him from the beginning, but I took on the role of sole caregiver on the 24th, when we came home from the University of Utah Hospital/rehab.
Were you the main caregiver?
Are you now?
Danny is high-functioning now. He has returned to driving and working, so the need for a full-time caregiver has mostly passed. I still help him manage and remember things as needed. We remain a team and have been for over 30 years.
How old were you when you began care?
I was 50.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
Our children are all grown now. They are on their own, except for our youngest son. However, Danny’s mother had to be placed in a care center at the beginning of September – while we were still in the hospital. So, we began caring for her, as Danny is her only living biological child.
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
I was in the process of making a job change – certifying to be a substitute teacher. I opted to put that on the back burner to be able to care for the love of my life. Now that Danny is doing so well, I am updating my résumé so that I can return to work. We need additional steady income to get our financial security back.
7. Did you have any help? If so, what kind and for how long?
I did have some help off and on – from our children and from some friends as well. They were good about giving me breaks. They came to be with Danny or even sometimes to take Danny “out” so I could get things done at home. (Danny always wanted me to be right by him or to be playing cards with him.)
8. When did your support of the survivor begin (e.g., immediately – in hospital, when the survivor returned home, etc.)?
My support began immediately. Actually, you could say that my support of Danny began on April 7, 1985, when we married. 😉
9. Was your survivor in a coma? If so, what did you do at that time?
Danny was in a coma for several days and in a state of confusion for several weeks after. Overall, Danny spent two weeks in the Neuro Critical Care unit. He then spent another three and a half weeks in the rehab unit. The first few days were low to no contact days, so I mostly hung out in the waiting room with family and friends and prayed. After that, I was pretty much in his room with him. I continued to pray. Also I asked questions and learned all I could to support and assist him.
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)?
In addition to the three and a half weeks of physical, occupational, and speech therapies in the hospital, Danny continued with all three therapies on an outpatient basis at our local hospital after we came home. He finished with physical therapy in December. He “graduated” (that’s how he puts it) from speech and occupational therapies on February 23rd.
How long was the rehab? Where were you when this was happening?
During outpatient therapies, I would drive Danny to and from his appointments. I did this until the end of January, when Danny’s driving privileges were restored. Usually I sat and waited for him, but on some days, I took advantage of the three hour sessions to go run errands or do other tasks. Occasionally, I would go visit the teachers and students at the school I used to work at. It was my “therapy.”
11. What problems or disabilities of your TBI survivor required your care, if any?
Well, Danny couldn’t drive, so I drove him. I handled and organized his medications, and initially I gave them to him. Now I load his pill organizer, and he takes them. Danny was diagnosed with diabetes during all of this, so monitoring his blood sugar was my task at first. He now takes care of it. Other difficulties Danny has are looping, fixation, frustration, outbursts, over-stimulation, anger, anxiety, etc. He has no filter; he has difficulties with memory loss; and he is easily tired. I/we deal with it as it comes along. Through therapy, we have learned some new coping skills and some strategies to use to compensate for what was damaged and lost. Danny has always been very independent and determined, so while in the beginning these qualities caused great stress, once the corner was turned to where Danny began to understand he had had a serious injury, they became the driving force to his recovery. He HAD to drive, and he HAD to go back to work. If that meant therapy, meds, and no drinking, then that’s what had to be done – even if he didn’t think he needed it.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Our life changed dramatically. We went from being spontaneous and outgoing to being very routine-oriented. Danny is not as affectionate as he once was, nor is his tolerance for things and people what it was. He says what he thinks, no matter whom it hurts. Some things are better, as we have a new appreciation for life, our family and friends, and the blessings of greater faith. For a while, things were bad, but thankfully, they improved. While I don’t wish this on anyone, I wouldn’t trade what we have gained for anything.
13. What do you miss the most from pre-TBI life?
I miss Danny’s affection. In April, we will have been married 30 years, and I miss my affectionate man. Fortunately, more and more now, he is showing affection to our grandsons, so I am hopeful his affection will come back to the kids and me with time. Somethings, I think, are a matter of relearning them.
14. What do you enjoy most in post-TBI life?
I enjoy how much closer my family has become. I also enjoy how my faith and testimony have grown. I have become calmer and more tolerant of things because in the big picture WHAT REALLY MATTERS?
15. What do you like least about TBI?
I dislike how one moment things seem fine/normal, and then, out of the blue and for no real explainable reason, it all gets turned upside down and inside out.
16. Has anything helped you to accept your survivor’s TBI?
Yes. Love, faith, and reality. I mean, it is what it is. You either accept it, move on, and make the best of it, or you don’t. If it were cancer or some other disease, you would do all you could to overcome it. No different here.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
How can it not? Some struggles exist because of Danny’s difficulties, so we have learned to choose our battles. We also choose to accept that life changes and people change, and so we choose to accept Danny’s injury and to try to understand all that we can. Overall it has brought us closer together and has given us a new respect for life and how truly fragile it is.
18. Has your social life been altered or changed and, if so, how?
This all changed Danny in ways he doesn’t understand. He acknowledges that he has a brain injury. But, he thinks he is the same as he was before the accident, so he thinks life should be as it was before. You see, Danny was very social and what I would call a “social alcoholic.” So much of what we did socially was tied to drinking – drinking to get fall-down drunk. So, while we have still socialize with our friends, it is different because Danny cannot drink (or at least shouldn’t). So far, he hasn’t, but he says that it isn’t as much fun because he cannot drink.
19. What are your plans? What do you expect/hope to be doing ten years from now?
Wow! Ten years from now…I hope that Danny has better clarity, that he can show affection again, that he can again filter what not to say in certain situations, and that financially we are again back to where we were headed, so we can travel and enjoy time with each other and with our family and friends.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
First, take time for you – no matter what. Even ten minutes a day can make a huge difference.
Ask for help. On some of the worst days, I reached out to say I need help. I was never let down. Someone always came through. Even if it was just a phone call, it helped.
Find and join a support-group for yourself. They will get it when no one else does.
Cut yourself some slack. It’s okay to be mad, cry, grieve, and mourn. We always think we have to be brave or strong, but sometimes we NEED to let it out and let go.
Try to stay positive.
Choose your battles wisely. At the end of the day, this is what will be most important.
You can only control so much. Give your survivor information and your opinion or reason, and then let him or her decide things as much as you can. Where respect is given, respect will be returned.
Lastly, never give up. There is always HOPE.
Thank you, Karie, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
If you would like to be a part of this project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.
(Photo compliments of Karie.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.