October 29 was National Stroke Awareness Day; it also marked 9 years and two months since my wife, Deloris, suffered a stroke. On that day, in 2005, I joined the hundreds of thousands of family members, mostly women, who are unpaid caregivers. I assumed this new role with no hesitation, and truth be told, no thought about what it entailed. My wife needed me and I was able arrange my other responsibilities to be there for her.
While these nine years were not easy, we were among the lucky ones. Deloris never lost the ability to speak or swallow. Although her mobility and endurance are impaired, she is not paralyzed. The stroke impacted her decision-making processes, ability to focus and follow through on a task. Her sense of humor is intact, if a bit more edgy than before. She remains extremely curious about all sorts of things, and capable of holding her own in conversation.
We are, however, no longer the equal partners in our marriage we were before. All major decisions fall to me, although I do what I can to bring Deloris into the process. I do all the cooking, housework, and laundry. I am her driver, her appointments secretary, her medical advocate. When she needs help for anything from getting up off the floor if she fell to reheating a cup of coffee, I am there. For years, I helped her dress, assisted in her toileting, her bathing. I provided support when she stood and an arm when she moved. I made sure she had both clean clothes and a clean body. I was/am on-call 24/7/365. It was as if I was raising another child, albeit an adult one. Before her stroke, we led busy professional and personal lives, committed to each other while often traveling close, parallel, but separate, paths. We talked about needing to find ways to spend more time together. Well, we found the way; it was just not what we had in mind.
Strokes devastate those who suffer them as well as their family and friends. While the specific impact and the resultant debilitation varies person to person, a stroke survivor is seldom, if ever, the same afterwards. Deloris has been forever changed. I have lost the woman I married, and I grieve that loss.
At the same time, I feel incredibly blessed by what I have experienced as my wife’s caregiver, I have learned about love, compassion, the importance of family and community, and what is truly meaningful in life. Since our families live thousands of miles away, they have not been available to help with Deloris’s care except sporadically. I have had to rely on the resources in and the members of the wonderfully supportive community in which we live, as well as some committed and compassionate professional caregivers. Deloris and I are luckier than many in that we have sufficient financial resources that allow us to live a relatively comfortable lifestyle, including hiring others to help with chores I can’t or don’t want to do (I joke that our financial solvency is in part the result saved a bunch of money by Deloris being unable to travel.)
We’ve developed a “new normal,” finding new ways to maximize our time together in ways that are both enjoyable and recognize her disabilities. Many times I wished my life were different from it is; at the same time, I recognize the futility in such thinking, and prefer to focus on the blessings and the love we are both experiencing.
Writing has provided me with a means to maintain social connections, as well as a creative vehicle through which I can process and integrate this experience. I have attempted to gather what I have learned through my experience in a soon-to-be-published book, Learning to Float: Memoirs of a Caregiver-Husband. More about this in future posts.
For today, I encourage us all to:
- Learn the warning signs of a stroke: Face dropping; Arms drooping; Speech slurring = Time to call 9-1-1. Early intervention by medical professionals can alleviate long-term repercussions.
- Write instructions for medical personnel; complete durable powers of attorney forms; update your wills.
- Take control of your life while you can.
Equally important, love your spouse, your partner, your family members, your friends, yourself. Let them know how you feel and how important they are to you. Don’t wait. Do it now. It’s the right time.