Caregivers SPEAK OUT! – Lisabeth Mackall
Donna O’Donnell Figurski
2. Where do you live? (city and/or state and/or country) Email? (optional)
Cottage Grove, Minnesota, USA firstname.lastname@example.org
3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?
My husband, Frank, was 39 when he had his car crash and suffered his TBI. He was a police officer responding to a call for assistance for another officer, and he lost control of his car on black ice and crashed.
4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?
Frank’s accident was on January 2, 2012. I brought him home on March 27, 84 days after he went to the hospital. He required 24-hour supervision due to his cognition and safety needs. They suggested to take him to a rehab center, but I decided that it was time for him to come home.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
At that time, we had three children – ages 6, 9, and 15. We now have a fourth child – my husband’s half-brother’s child whom we took custody of one and a half years ago.
6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?
I was employed full-time. I was working as Rehab Director for nine buildings here in Minnesota. I worked the shift opposite to Frank’s, so we had very little time together. When he was allowed to come home from the hospital, I quit my job. I attempted to go back about a year after he was injured and had to quit. I just recently (November) went back to work full-time, but we had to hire a nanny for the morning to help get the kids to school after I leave for work.
7. Did you have any help? If so, what kind and for how long?
I had no help with Frank, although my mom did move in with us immediately after the crash and stayed for four months. We did not allow caregivers into the house since Frank was a police officer – we had family and friend support.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
Our support started the minute Frank was injured and continued for about two years. If we needed help now, we could call on law enforcement, but it is not in my nature to ask for help.
9. Was your survivor in a coma? If so, what did you do during that time?
Frank was in a true coma (minimally responsive) for about two weeks. He started to respond with a thumbs-up sign and by fighting against his restraint. He continued to improve from there. I spent that time talking with Frank, and talking with the cops and visitors as well. We were usually swamped with visitors, so I did not get a lot of time without people there. But, when I did speak with Frank, I told him over and over what had happened and that he was safe.
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)? How long was the rehab? Where were you when your survivor was getting therapy?
Frank was in the hospital for 84 days. Once he left the medical unit and went to rehab, he was in for the full time until he was discharged. He then started outpatient rehab three times a week. That continued for a month. Frank had all three disciplines, although he was eventually weaned off occupational therapy. He continued to have physical therapy and speech therapy on and off for a long time. Right now, Frank can still go back to speech therapy if he wants, but he is taking a break. I would attend some of his sessions, but I tried to stay out of the speech therapy sessions. (They were too hard for me to watch, since I am a speech therapist, and I knew Frank thought the sessions were irritating.)
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Frank has a hard time learning new things about technology. He has a problem with short-term memory. He also has a very short fuse, so kids arguing or chaos in the house is very difficult for him. We do finances together. Otherwise, he manages his own schedule about 75% of the time. I manage most of the other aspects of the house and the kids, with help from Frank if I leave lists and tasks.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Life is different. I have to work very hard to be a wife and not a caregiver. Caregiving is easier and not sad. When I step into the wife role on some days, it is heartbreaking to know what we have lost.
13. What do you miss the most from pre-brain-injury life?
I miss having a highly intelligent partner in life who would debate with me and who is solid in his understanding of the world around him.
14. What do you enjoy most in post-brain-injury life?
Frank and I have more time together. Our family is more important now that we know how precious life is and how fast it can change.
15. What do you like least about brain injury?
I dislike Frank’s irritability and his lack of trust in the decisions that are made.
16. Has anything helped you to accept your survivor’s brain injury?
Being a speech therapist has given me a huge advantage with this recovery, although sometimes I wish I didn’t know so much.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Frank’s brain injury has changed many things. In fact, we are moving. Our wood floors bother him when the dog walks across it. Frank also needs to have more space for himself, so we are trying to find a bigger house for all of us.
We have very little social life at this point. Most of our friends from before the accident have drifted away. The people we are closest with are those we met after the crash. We have busy kid schedules, and with Frank’s fatigue, it is often just easier to hang out at home.
19. What are your plans? What do you expect/hope to be doing ten years from now?
We have a child with behavior struggles. That doesn’t mix well with a TBI. Puberty and life-changes are going to be challenging. My goal is to hold our family together by thinking ahead, finding the right space for all of us, and consciously talking about the problems that we have together as a family.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
We are all in the same ocean, but in separate sinking ships. We can help one another stay afloat if we ask for help. I truly feel that trying to navigate this world without help is too hard. Even knowing what I know about brain injuries as a professional, I was in no way prepared to deal with things that I live through each day. No one is. We all just have to find a way to make the best decisions we can for ourselves and for our loved ones. That doesn’t mean that we all stay together as a family – sometimes families break apart. That is the devastating part of this journey. A brain injury can destroy a family. Sometimes there is no choice but to separate a survivor from the family due to the injury. Being a therapist, my goal is to help people navigate the world as best as they can and to hopefully keep the family together.
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