By Gregg Ratliff
Post Traumatic Stress Disorder (“PSTD”), soldiers have it. Can caregivers have it too? I am not a licensed psychologist so I can’t say for sure. But I do know I have experienced a lot trauma and stress “living in a war zone” for seven years of day and night caregiving. ALS takes its toll on the entire infantry around it.
The immediate stage following my wife’s passing was the “in a daze stage”. Though one knows it’s coming we’re never quite prepared enough. Even if final arrangements have been made there are still a jillion questions to be answered and decisions to be made; family and friends to be notified (we had prearranged a telephone tree calling system), there were sleeping arrangements to be made (we had a relationship with a nearby hotel from Nancy’s annual 5K events), meals to be arranged (thanks to our church), we had public announcements to be made (via newspapers), we had final meetings for final arrangements (despite pre-arrangements already made), and on and on the list goes.
Stage two, everyone returns to their home and we come to the realization that our home is now just an eerily quiet house. Reminders of the past are everywhere. Friends continue to make contact, for awhile, and then it’s back to life as normal – for everyone except the caregiver. That world is now quiet solitude, reflective, and early stages of lonesome.
Stage three is taking care of business; changing the “ICU room” in the home back to a bedroom, paying expenses, acquiring death certificates, contacting insurance companies, cancelling no longer needed services, changing status’s, checking the “single” box (while staring at it with a tentative uncertainty), and of course talking with attorneys and financial advisors. For many, like me, it was the first time I had been alone for many decades. That requires a lot of adjusting; eating alone, sleeping alone, requesting a “table for one”, and being the solo individual at couples events.
Stage four includes going through your loved ones belongings, agonising trips to Goodwill laced with feelings of guilt and regret. Then comes assessing the situation to make further difficult decisions, like; has “the disease” wiped out our “financial nest egg”? Should I consider the kids or other family members requests (or demands) to move closer to them? Should I sell my house? Can I survive on Social Security plus the little that remains? Thoughts like “we sure thought we had planned for our future. What happened? Do I need to go back to work?” So many difficult decisions full of feelings of vulnerability.
Stage five: The “Oh, I’m so lonesome!” stage. Do I remain single? Do I date again? (It’s been so long and I didn’t even like the dating process back then.) How will the kids feel? I never thought it would be this way!
I now understand more than ever before what ALSA meant when they told me “ALS is not just an individual’s disease, it’s a family disease.” My previous seven years were totally focused on my loved one. Now there’s a void and I feel like I’m wandering in the wilderness. Who am I? Where am I headed? Will this emptiness end? Is there life after ALS? Yes, I’m sure there is but like the disease it’s a slow process to find a cure.
Today’s blog post is the final installment of a recurring monthly series from our good friend Gregg Ratliff. In 2009, Gregg’s wife Nancy was diagnosed with ALS, and he became her full-time caregiver for the next seven years. In his series, “Perspectives: It’s All in How You Look at it,” Gregg shares his insights on ALS and the impact it has on families.