Caregivers SPEAK OUT! Sherri Ward
Donna O’Donnell Figurski
2. Where do you live? (city and/or state and/or country) Email? (optional)
Williamstown, New Jersey, USA firstname.lastname@example.org
3. What is the brain-injury survivor’s relationship to you?
The survivor is my husband.
How old was the survivor when he/she had the brain injury?
He was 39.
What caused your survivor’s brain injury?
My husband’s traumatic brain injury (TBI) was caused by a motorcycle accident.
4. On what date did you begin care for your brain-injury survivor?
My care began on July 11, 2009.
Were you the main caregiver?
Are you now?
How old were you when you began care?
I was 36.
5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?
Yes. I also had the responsibility of caring for our three kids.
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, but I had to quit my job of ten years to stay home and care for my husband.
7. Did you have any help? If so, what kind and for how long?
8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?
My responsibility for my husband began immediately – it started the day of the accident. Even though my husband was in a coma in the hospital, I was the one making all the decisions in regard to his care.
Yes, he was. I prayed and prayed, made decisions in regard to my husband’s care, and tried my best to keep things going at home.
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?
Yes. My husband’s rehab was outpatient, as per my decision. I know my husband, and, if he were to have gone into an inpatient facility, it would have been the worst thing for him. This is why I decided to quit my job and stay home with him. He had speech, physical, occupational, and psychological therapies. This occurred four days a week, four hours a day, for about a year. (His psychological therapy is still going on.) I was the sole person by his side at this point; none of my husband’s family offered to help ever. I drove him to and from his appointments every day.
11. What problems or disabilities of your brain-injury survivor required your care, if any?
There are days when my husband is able to care for himself completely. But, the days in which he does require help far out number those good days. He gets disoriented and confused because he has periods of complete memory loss. Some days, he is unable to get out of bed, to dress himself, to provide himself with any type of sustenance, such as food or drinks, or to take medicines.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
Every aspect of my life has changed since my husband’s accident. To say my life is better or worse is hard I think – it’s just different. Life is full of ups and downs and twists and turns in the road. In order to keep one’s sanity, a person needs to be able to roll with it and try to make the best of each situation. The facts, however, are that most, if not all, of my friends have removed themselves from my life. It could be from a lack of understanding of the situation and my husband’s disabilities or perhaps it is from the fact that they just don’t want to be bothered because it’s too much for them to deal with. Not sure really.
13. What do you miss the most from pre-brain-injury life?
I miss my husband, the companionship, and the parenting partner I had. My husband is a completely different person now in every way. His outbursts and anger are always directed towards me. This is something that he never did before.
14. What do you enjoy most in post-brain-injury life?
15. What do you like least about brain injury?
I dislike the unknown. Not knowing how the future will play out is one of the hardest things right now.
16. Has anything helped you to accept your survivor’s brain injury?
Thinking about it now, I actually don’t know if I’ve ever really fully accepted my husband’s brain injury. I mean, I know my husband has a TBI, and I know his limitations and disabilities, but accepting it in my mind makes it so final. To think in terms of what the future holds for us scares the crap out of me. I see a therapist, and it does help, but I do have a hard time accepting this new life.
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
Yes. We are in the process of losing our home due to lack of income. The relationship between my daughter and me is pretty much nonexistent now, as she sees my husband as the victim, so to speak, during his outbursts and me as the awful wife, since I don’t engage him in these incidents. As a result, she only hears what comes out of his mouth, which are all the name-calling and paranoid delusions that my husband feels are real.
18. Has your social life been altered or changed and, if so, how?
Haha! What social life?
19. What are your plans? What do you expect/hope to be doing ten years from now?
I really don’t know where I will be in ten years. My husband’s health is steadily deteriorating, so I don’t know how I would plan anything. We are just living each day as it comes right now.
20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?
Take time for yourself, and stand your ground when it comes to caring for yourself! This is something I did not do, and now it’s kind of late for me. You are not only a caregiver to your survivor, but also a caregiver to yourself. Honestly, you should come first because, unless you take care of yourself, you can’t expect to take care of someone else.
I just want to add that this is not a life we chose to live. Rather, it’s a life that was dealt to us for whatever reason. Caring for and dealing with someone with a severe brain injury is not something I would wish on my worst enemy. The impact it has on everyone involved is tremendous. Our lives have changed forever. The loving, caring man that once was will never be again. I think that’s the hardest part for me. My husband died the day of that accident – the man I fell in love with and married. The man I have now is a stranger to me in so many ways. As I said above, this is probably the hardest part for me.
You can learn more about Sherri Ward at “Faces of Brain Injury.”
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
(Photos compliments of Sherri Ward.)
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