Growing Older with TBI

It’s been thirteen years since my husband sustained a severe TBI when a car hit him as he cycled home from an afternoon workout. It took two years to resume what we call a “normal” life, although we both shy away from the word “normal” nowadays.

In many ways, we have been fortunate. Hugh returned to work. He was able to return to the sports that he loves, and he’s been able to use compensatory strategies to overcome his lingering deficits. He has not had a seizure in years. Knock wood — we know his meds are working. But this year, we sat down and had a long talk about life. We are now teetering on the edge of our 60th birthdays and have read reports that some TBI survivors are at risk for early dementia or Parkinson’s disease. * After Hugh’s initial response to these reports: “I’m screwed,” we talked about our future options in a way we hadn’t before.

Planning for life as an aging adult should be a natural part of life. Is it any different to plan for later life as the partner of someone with a TBI?

My answer is yes. Being mentally, emotionally, and financially prepared is important to Hugh and me. He may never develop dementia or Parkinson’s, and perhaps I will be the one to fall ill long before my husband (caregiver stress can cause health issues); but we have learned a great deal from his TBI experience, and we have learned even more from caring for all of our parents.

What’s the old saying by Lee Child? Hope for the best, plan for the worst. Here’s how we’re planning for the worst (and in my experience, when I plan for the worst, the worst doesn’t happen; so I’m kind of counting on that):

1. Educating ourselves about early onset symptoms so we can seek medical help right away if we suspect any changes.
2. Being proactive about our own wellness: eating healthfully, staying active, getting proper rest and sleep, and living in an environment where we can best keep up these habits. For us, that’s near the beach.
3. Actively keeping our stress to a minimum by doing the things we love that have a calming effect on us (going for walks, yoga, enjoying time with friends, and enjoying water sports).
4. Downsizing our residence to reduce costs and stress. I learned from caring for my own parents that it’s better to downsize before health issues progress than after, so we’ve sold our bigger house in Richmond, Virginia, and moved to a ranch in Nags Head, North Carolina, near the ocean. By giving up some possessions and moving to a smaller, more manageable house on one level, we’ve saved our daughters the job of clearing out a big house in the middle of a health crisis.
5. Putting our affairs in order: purchasing a long-term care policy and staying up to date on changes involving medical insurance.

Taking charge of our lives in this way feels invigorating — as if we have control over some things (insert loud laugh here). Hugh and I will use our talents to continue working part-time, but most of our energy these days will go into making sure that we enjoy the healthy years we have left to us as much as possible — outside, in the water, on the beach. We made a conscious decision not to fall into the trap of working night and day to prepare and save for the future.

Our future is now.
We’ll hope for the best.
And enjoy each moment and day as it comes.