Caregivers SPEAK OUT! Greg Payan
Caregiver & Author
Donna O’Donnell Figurski
1. What is your name? (last name optional
2. Where do you live? (city and/or state and/or country)
As I write this, I’m currently in Bethany, West Virginia. Since the pandemic started, I’ve been dividing my time between here and Forest Hills, New York.
3. What is the brain-injury survivor’s relationship to you?
My care-recipient was my long-time girlfriend, now my wife.
How old was the survivor when he/she had the brain injury?
My wife, Holly, was 39 when her aneurysm ruptured.
What caused your survivor’s brain injury?
We had no forewarning. Holly went to bed the night before, maybe with a dull headache. She woke up in the early morning hours in tears and unable to move. She had a seizure before being loaded into the ambulance and brought to the hospital.
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?
I became Holly’s caregiver once she left the ICU (intensive care unit) and was transferred to rehab. As her rehab center was concerned about liability for her wearing a portable defibrillator due to her heart failure during her rupture, I was at her rehab many hours a day. I was responsible for many things they did not do due to liability concerns. After Holly had been in rehab for two weeks, I largely took over her care. I had some help from my parents as I slowly transitioned back to my job.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?
I was employed at the time, and my employer was extremely flexible and understanding of the situation. I was given as much flexibility as I needed until my wife had fully recovered.
7. Did you have any help? If so, what kind and for how long?
My parents were critical in helping, particularly as Holly had complications with hydrocephalus (swelling on the brain) resulting in multiple shunt surgeries. Also, her friends helped when they could. I’d give medication schedules and instructions, and they would spend the day with her when I had to work. We dubbed them “brain-sitters.”
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
Immediately. Holly was unconscious for the first 24 hours but woke up in a panic with a tube down her throat the following day, so you could imagine her state. I had to calm her down as best I could. The essential thing was that, when she woke up, she recognized me. I gave her a pen and paper, and she was able to write things down. I saved those notes, and they appear in a book I later wrote.
9. Was your survivor in a coma? If so, what did you do during that time?
Just for a day. I have a difficult time remembering what I did. I was pretty much in shock. I did leave the hospital that night and tried to get some sleep, but I think I was just numb from trying to imagine if life would ever be the same.
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?
Holly did two weeks of inpatient rehab. I went there daily while trying to work as well. My job was about 40 miles away, and I had to deal with New York City traffic, so those days were long. They were good and kind to Holly in rehab, but, as mentioned earlier, Holly had to wear a portable defibrillator after having heart failure in her initial bleed. Rehab would not touch the defibrillator to charge the batteries or clean it for liability fears. Additionally, the biggest problem was that the sensors on it would often shift. If they shifted, there would be a warning signal because the defibrillator was detecting what appeared to be an irregularity. If you did not reset it within 30 seconds, it would give Holly a shock large enough to restart her heart, even if she was just sleeping and doing fine. That was, by far, the most unsettling thing during rehab.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
Aside from helping her out after numerous surgeries from her shunts and just general help during those times, she has made a miraculous recovery.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
I believe life is better. I think my wife and I connect better. She sees me differently. We dated for 11 years prior to her bleed, but we got married soon after her recovery. I cherish calling her my wife.
13. What do you miss the most from pre-brain-injury life?
Peace of mind. I thought tragedies and horrible life-events happened to others – that I’d have a pretty good life, live to old age, and die of natural causes. My life and the lives of my family members have been blessedly free from tragedy or heartache until my wife’s brain-bleed.
14. What do you enjoy most in post-brain-injury life?
Not taking things for granted any more.
15. What do you like least about brain injury?
I worry a lot. Less so, in recent years. I think some of my worrying has to do with the hypertension I’ve been diagnosed with in recent years. In the first three or four years, I was a mess any time Holly had a headache or felt the slightest bit off.
16. Has anything helped you to accept your survivor’s brain injury?
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Thankfully, it has not. I truly believe we made it out the other side stronger – with a better understanding of what we meant to each other.
18. Has your social life been altered or changed and, if so, how?
19. What are your plans? What do you expect/hope to be doing ten years from now?
I think at some point, we should go back for a scan to see if any other aneurysms are developing and just to see how Holly’s doing. She had multiple shunt revisions over a period of 18 months. They were basically annual follow-ups during which we hugged our neurosurgeon and his assistant and said we’re fine. Since then, we’ve just been living life. I fear at some point Holly’s shunt will eventually fail again. They are notorious for doing such. I imagine Holly will start to develop some headaches and we’ll have another surgery down the road. I’m dreading that, but I guess it’s minor in the scheme of things.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
I almost feel a bit of “survivor’s guilt,” even though that’s not exactly the right term. My wife has made a full recovery that she had no right to make after a grade-4 bleed. Holly was a teacher at a college, and nobody would have thought she could return to it – but she did. Her good outcome is a combination of luck and the skill of her neurosurgical team. I see so many survivors of brain injury who suffer post-TBI (traumatic brain injury) through life and relationships, and I can do nothing but wish them peace in everything. I am truly awed by how strong they are to face the world each day with the myriad of problems that I see them going through in the various online support groups that I am a part of. I can’t offer advice. I can only say their strength inspires me.
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