I am a caregiver. This is the hat I wear today with both pride and humility. And while it is not a hat, a role, I planned or one I imagined would give me the gratification and learning it does, I embrace the joys and heartaches that come with this important work. I also wear other hats now — non-profit volunteer, community member, author, to name a few — and in the past — criminal defense attorney, massage therapist, small business owner, higher education administrator, adult educator. I have found them all satisfying in many respects, and still do. At the same time, being a spousal caregiver has, in many ways, been the most rewarding.
(As an important aside, speaking of hats, my favorite hat is now, and always has been, a panama straw.)
My wife Deloris had a stroke in August 2005 and while she has recovered from this debilitation to a great degree, I still am on call 24/7. We live on Whidbey Island, about 40 miles north of Seattle, Washington. Our family members are spread out from Salt Lake City to Rhode Island, so they are not available for daily care. Household responsibilities — cooking, shopping, laundry, driving, scheduling, as little house and yard work as I can get away with – as well as monitoring Deloris’s medications, diet, exercise, and other daily routines are my responsibility.
While I discharge these responsibilities with varying degrees of positivity, depending on the day, I attempt to maintain some semblance of a personal life for myself, knowing the first rule of caregiving is taking care of oneself in order to be able to care for others. And I strive to remember that the woman who needs my help, who is incapable of full independence, is not some invalid but rather is my wife, a highly intelligent, mature, and loving woman. She is my life partner, my soul mate, and not some recalcitrant three year old—regardless of how I think she is acting in any given moment. This is a hard balance to maintain, and one I am not ashamed to say I have not always capable of doing. Throughout this journey, in fact almost in any given week, I have experienced the entire gamut of emotions, a fact I of which I am not necessarily proud. As much as I want to think of myself as always being compassionate and understanding, accepting whatever is presented with patience, grace, and love, there have been times when my “Evil Twin” has taken possession of my body. I can’t believe how he treats my wife at those times! Where does he come from? Who raised him! Luckily, as I write this, he seems to have left. I can only hope he stays away. I know Deloris does.
I know my experiences are not that different from other family caregivers, some of whom are working with loved ones with much more serious debilities than Deloris’s. We are all on our separate journeys, even as we face many of the same issues and concerns. All I know is my experience, which I share in this blog, for whatever help it might be to others.