In the months after Dave’s accident, as he went from an ICU to eventually a skilled nursing facility all the while lying in a persistent vegetative state, it became clear that there wasn’t going to be a miracle recovery. We slowly began to realize and accept that the Dave we knew and loved from before was gone. He was never coming back. We had to learn to live with our new reality of caring for an adult with a TBI and that he would more than likely always be dependent on others. We had no idea at the time what that reality would ultimately look like but we began to plan. My parents got all of Dave’s assets in order establishing a Special Needs Trust and my mom became his legal guardian.
I began my own planning as well. As much as we like to think otherwise, our parents will not live forever and with the life expectancy of someone with a TBI being about seven years less than that of someone in the general population (Harrison-Felix, 2004), there was a good chance Dave was going to out-live my parents. What would happen to Dave then? It was never really discussed, but I knew I would become his legal guardian and would be overseeing his care when that day came. It wasn’t something that my parents were forcing on me and I knew it would be my choice. I could always choose not to take on that responsibility and I am grateful to my parents for this freedom.
In my contemplation of whether to start House of Hart I found the blog, Trophy Daughter. In one of her posts the author poses four questions that should be considered by someone considering taking on a caregiver role. Although she is coming from the position of caring for a sib with a mental illness, these questions resonated with me and reaffirmed my decision to eventually be the full-time caregiver of Dave. You can read the full post here but these are the questions she wants us to think about:
“What is my motivation for caregiving?”
Quite simply, he’s my brother. Every one of my earliest memories involve him and I can’t imagine walking away from him in his time of need. I know there are others that make different decisions and I’m not passing any judgment, but I love him and will not leave him vulnerable and alone in this world.
“Am I really the person best-equipped for my sibling’s caregiving?”
Yes, I am the best-equipped after my parents. I am familiar with the ins and outs of the medical world with my prior work experience as both a registered nurse and care manager. This also makes me comfortable providing any medical care Dave may need. Furthermore, my husband and I are financially stable allowing me to stay at home and be readily available to care for Dave.
“What would happen if my sibling was an only child?”
He would end up in a nursing home with no one to advocate for him or make him feel of value as a human being. I know nursing homes serve a purpose and they were our best option early on in Dave’s recovery. However, he is now living at home with my parents and I will do my best to make sure he never has to go back to one again.
“What am I unwilling to forfeit to care for my sibling?”
I am unwilling to sacrifice my marriage or the happiness of my children. I am extremely blessed to have a husband that supports my desire to care for Dave. I have promised though, that if he, our children, or our marriage were negatively impacted then we would sit down and seriously consider our options and what would be best for all involved.
- Harrison-Felix C, W. G. (2004). Mortality following rehabilitation in the Traumatic Brain Injury Model Systems of Care. Neurorehabilitation, 19(1), 45-54.
- Should You be Your Sibling’s Keeper? (4 Questions to Consider). (2013, July 1). Retrieved from Trophy Daughter:
- What’s Your Worry? Mine? That I’ll Be Mean (caregiving.com)
- Tell Us: Has Caregiving Cost You Your Job? (caregiving.com)
- Hire Someone Skilled in Caregiving: They Care About More Than Making a Living (caregiving.com)
- I’m Not The Only Caregiver In This House (caregiving.com)
- 10 Tips for Family Caregivers: 10 Great Apps (caregiving.com)
- Beginning the Transition to More Help (caregiving.com)
- My Caregiver Business Card (caregiving.com)