Caregivers SPEAK OUT!
Theresa Friedle (caregiver for her husband, Scott)
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)
Tomahawk, Wisconsin, USA firstname.lastname@example.org
3. What is the brain-injury survivor’s relationship to you?
The survivor is my husband, Scott. At the time of the accident, Scott and I were engaged. We were married on June 3, 2017.
How old was the survivor when he/she had the brain injury?
The accident happened two days before Scott’s 47th birthday.
What caused your survivor’s brain injury?
We were both working as truck drivers. Scott was picking up a load of plywood, which needed to be tarped. Something happened when he was on top of the load spreading out the tarp, and he fell anywhere from thirteen to nineteen feet (depending on if he was standing upright). He landed on his head on a concrete floor.
4. On what date did you begin care for your brain-injury survivor?
Scott’s injury happened on October 27, 2016. It took me ten and a half hours to get to him. I’ve been at his side ever since then.
Were you the main caregiver?
At first, the doctors and nurses were Scott’s caregivers. When he was discharged from rehab on December 22, I became his main caregiver.
Are you now?
How old were you when you began care?
I was 46 years old.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
At home, I had a young adult daughter, who was expecting her first child, as well as my younger two children (older teenagers).
6. Were you employed at the time of your survivor’s brain injury?
Yes. I was working for the same company as my (now) husband. I had a permit for a commercial driver’s license.
If so, were you able to continue working?
No. However, I was told about a program through my state called “Family Care.” I now get paid to take care of my husband.
7. Did you have any help? If so, what kind and for how long?
I learned a great deal from the doctors, nurses, and therapists who worked with Scott. I asked a LOT of questions. However, once Scott came home, other than my family pitching in with the chores – no. It’s my job.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
Immediately – while Scott was in the neuro intensive care unit.
Scott’s family lives quite a ways away, so, to facilitate keeping them informed of his progress, I started a Facebook page about him. It turned out to be a wonderful support system.
9. Was your survivor in a coma?
Yes. Scott was in a medically induced coma. He had a craniotomy (to allow his brain room to swell), he was intubated, and he had two ports (one for meds and the other for nutrition).
If so, what did you do during that time?
I stayed by Scott’s side – talked to him and sang to him. I prayed. I kept his family informed, etc.
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)?
Yes. Scott was transported to an inpatient rehab facility closer to home. They provided him with occupational, speech, and physical therapies.
How long was the rehab?
We were there for twenty-two days. Scott continues to see speech and physical therapists twice a week.
Where were you when your survivor was getting therapy?
I stayed with Scott in the rehab center.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
When Scott was first home, he needed help with almost everything! He was still in a wheelchair, and he needed assistance toileting, dressing, bathing, and more. He now walks with a cane, needs occasional help toileting, can dress himself, can help cook meals, does simple crafts, etc. He can’t drive, so I also transport him to and from wherever he needs to go.
12. How has your life changed since you became a caregiver?
Our lives have changed dramatically. Everything we do revolves around Scott’s needs, doctor appointments, and outpatient physical and speech therapy appointments. We can no longer attend church services, and we cannot go anywhere where there will be loud, noisy crowds.
Is it better?
In some aspects, yes! I get to be home with my children, and I get to see my grandson more.
Is it worse?
Yes. Scott is limited as to the things we can do, and we cannot drive a semi right now – if ever.
13. What do you miss the most from pre-brain-injury life?
I miss going to church and driving a semi. The semi meant super-long days and hard work strapping and tarping loads. Driving it was often scary with how some people drive around us. But, it was something I’ve wanted to do since I was a teenager!
13. What do you enjoy most in post-brain-injury life?
I love that I’m able to be home with my family! I love that I get to take care of Scott, who remains a super-loving wonderful man!
14. What do you like least about brain injury?
Scott’s constantly in pain.
15. Has anything helped you to accept your survivor’s brain injury?
What has helped me most is being super-grateful that Scott’s ALIVE! I feel that, even if Scott stays how he is now, we still have a great deal to be thankful for.
16. Has your survivor’s injury affected your home life and relationships and, if so, how?
Of course it has! Every aspect of our life has changed. We had to move our bedroom to the dining room because Scott cannot climb up and down the fifteen stairs to the upper level. Our laundry room is currently being remodeled so that Scott will have a shower. Now, I have to give him sponge baths in the kitchen. My children are happier because we’re home most of the time now. Through the Facebook page I created, I was able to develop a relationship with Scott’s family. They are so warm, loving, and welcoming.
17. Has your social life been altered or changed and, if so, how?
We seldom eat at restaurants anymore. The busyness of them overwhelms Scott. We can’t go to church for the same reason. Social events are out. Friends can only stay for an hour or so, otherwise Scott’s exhausted. At this point, most of my social life is through Facebook. Honestly, we’re NOT dwelling on that!
18. What are your plans? What do you expect/hope to be doing ten years from now?
We’ve discussed a few options, but none that is viable at this point. Until we know how permanent various parts of Scott’s injuries are, we really cannot plan much of anything. We make tentative plans for a week or two at a time, knowing that we can only do them IF Scott is having a good day that day.
19. What advice would you offer other caregivers of brain-injury survivors?
This is a SUPER-hard job, as our emotions are involved!
Be gentle with yourself and super-patient with the PERSON you are caring for.
Join support-groups, even if you can’t physically attend a group. (I have found several through Facebook by entering “TBI support groups.” TBI=traumatic brain injury.)
Make sure you get the rest you need.
The hardest for me? ASK for help when you need it!
Celebrate each step forward. Little steps are STILL STEPS!
It’s going to be a very long road. Educate yourself about TBI.
Get involved with the therapists – you will get a better sense of what your loved one can and can’t do. (This helped me tremendously with selecting activities for Scott. I wanted to give him something that he CAN do – so he has a sense of ACCOMPLISHMENT. I praise his efforts, regardless of his success. I don’t live with Scott’s pain – but I can see how HARD various tasks are for him to do. When Scott is frustrated that he can’t do something that he used to do easily – Scott’s usually upset about household chores, etc. – I remind him that there is a HUGE difference between CAN’T and WON’T!)
Take notes when you go to various doctors. I have found that their records are often INCORRECT.
Life is very, very different than what we had envisioned, but “different” does NOT need to equate with “bad.”
Attitude is EVERYTHING!
It’s OK to cry.
It’s OK if all the chores aren’t completed every day. Your best IS good enough. Know that your best fluctuates every day – sometimes several times a day. One day you will be able to get everything that you want to do done! Woohoo! Another day, your best is simply getting out of bed!
YOU ARE NOT ALONE!
20. Do you have any other comments that you would like to add?
Sometimes reading the answers to these questions sparks more questions. I would be happy to explain further.
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