Caregivers SPEAK OUT! Harriet Hodgson (caregiver for husband)
Donna O’Donnell Figurski
(Author of Prisoners without Bars: A Caregiver’s Tale)
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country) Email? (optional)
Rochester, 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?
I cared for my mother, who had been a brilliant woman before her Vascular Dementia. At the time, nobody knew mini-strokes continued to spread.
4. When 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?
I started caring for my mother after she was found wandering in a department store. Interestingly, my mother called from Florida to tell me this story. “The clerk told me cars are parked outside the store.” In my fifties, I moved my mother from Melbourne, Florida, to Rochester, Minnesota, to care for her.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
I wasn’t caring for anyone else 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. I was a freelance writer. Continuing to write was difficult. My mother lived with us for a month, while her apartment in an assisted living community was being readied for her. If I sat down at the computer, she stood behind me and literally breathed down my neck.
7. Did you have any help? If so, what kind and for how long?
I moved my mother into an assisted living community. Also developed a weekly schedule of care: shopping day, medical/dental day, errand day, out to lunch day, etc.
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
On a frigid night, when the temperature was 35-below and the wind chill was 50-below, my mother called and said she was going back to Long Island to be with friends. All of the people she mentioned were deceased. I called her physician, and he wrote orders sending her to nursing care, a locked ward.
9. Was your survivor in a coma? If so, what did you do during that time?
No coma. Profound confusion.
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?
No rehab. There was no way to fix my mother’s mind.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Complained to management. Social services came and evaluated her. Mom couldn’t answer any of the questions on the Mini Mental Status Exam. Worse, she said, “My daughter put me in here.”
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Years later (maybe ten), caregiving took over my life. I’ve cared for three generations of family members: my mother, my orphaned twin grandchildren, and now my husband, who has a spinal cord injury. This prompted me to write a series of books for family caregivers.
13. What do you miss the most from pre-brain-injury life?
I miss the freedom of my old life and being able to do what I want. Am also physically and emotionally tired.
14. What do you enjoy most in post-brain-injury life?
Being even closer to my husband. We are devoted to each other.
15. What do you like least about brain injury?
I hate the unpredictability of brain injury. For example, my mother would call my phone number repeatedly and hang up repeatedly because she didn’t recognize my voice.
16. Has anything helped you to accept your survivor’s brain injury?
Learning about Vascular Dementia and writing have helped.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Eventually my mother’s brain shut down. She couldn’t read, couldn’t speak (grunts), didn’t recognize me, and thought I had come to harm her. This was heartbreaking.
18. Has your social life been altered or changed and, if so, how?
I don’t really have a social life.
19. What are your plans? What do you expect/hope to be doing ten years from now?
My plans are to care for my husband until one of us dies. Both of us are 84 years old.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
Be kind to yourself, and be on the lookout for Compassion Fatigue.
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