Joko pleaded with me to hire a professional caregiver for a few days a week to give me the respite I so desperately needed. For so long I adamantly refused, protesting that no one could possibly take care of my wife like I could. No one knows Linda the way I do. And what if, in my absence, she needed me, or called for me, and I wasn’t there? In my mind, that was an act of ultimate betrayal. I knew I was suffering, and I knew how desperately I wanted and needed some time for myself. I simply could not bear the thought of leaving Linda for any period of time.
In her illness, Linda grew increasingly more dependent on me, to the point where she wanted to be a fixture at my side at all times. I’d turn to the right and there she was, I’d turn to the left, and there she was. She needed me to not only take care of her worldly needs, but to validate her state. If I am happy, she is happier. If I am peaceful, she is more relaxed. I began to believe that my wellbeing would just have to be sacrificed at the altar of love and devotion. The only problem was…I was falling apart.
According to the study below, there is unassailable evidence that explains why caregivers often experience a compromise in their own health and well being while caring for a Loved One.
I recognized myself in this study!
With great trepidation, I began to interview caregivers sent to me by a local agency. What a surprise when I found out that so many of the candidates were loving, kind and experienced, who would treat Linda with the dignity, respect and compassion that I feared would be lacking.
I hired a professional caregiver and I also asked family members to start spending some time with Linda, so I could slip away for a while and take care of ME. Whenever I would come home from some alone time, I expected and feared the worst. But the worst never came to pass. More often than not, Linda would have had a delightful time in my absence. And to my great surprise and utmost appreciation so many of the chores (laundry, tidying up, dishes,…) that I would have to do in addition to taking care of Lin, were being done by the hired caregiver.
I was now free to go to a movie, take a hike in the woods, come to the office, do some writing, visit with friends. For the very first time in years I felt like my life was beginning to seep back into me and felt that I was still alive inside after all.
Joko didn’t stop there. She urged me to go away for a 2-night weekend and offered to stay with Linda. After much encouragement, and definitely not entirely at ease, I did. And guess what? Linda and Joko had a blast and I got to spend much needed time with my brother. WOW!
Seeing my sweet wife continue to lose her battle against this relentless illness has not gotten any easier. However, it is truly transformative to be able to step away and recognize that my life needs caring for too and I attribute creating ME Time as perhaps the single most important step I have taken in bringing me back from the brink. The loss of my independence while being a caregiver has been a palpable source of deep and profound grief. While I feel joy in the presence of people, I have always been a private person, and the solitary time I carve for myself is my most creative and rejuvenating. I am comfortable being by myself for a few minutes or for days at a time. Whether we call it alone time, independence, or ME time, it always comes with a stillness that is invigorating.
I never detach from Linda. I am never unaware of her needs and she can count on me to provide for her in every way for the duration. However, now that I have managed to create some time for me, I bring a recharged and refreshed energy to taking care of her.
I learned the hard way, like most caregivers, that by the time we are willing to submit to the need for ME Time, we are already desperate for it.
Instead, recognize that this is a process that will unfold over time, often in a way that you can never predict or anticipate. To create a place for yourself, outside of the duties of caregiving, is to breathe life into your hopes and dreams, and that is the place where you can RE-MEMBER who you are.
Linda and I vowed on our wedding day to love each other in sickness and in health. Nowhere in our vows did it say that we would do so at the expense of our own health.
I know that Linda will always want the best for me, just as I do for her. I also know that life will continue after she is gone.