I received a pretty tough email from a caregiver yesterday. They basically blasted me for "institutionalizing" my wife by having her placed in a nursing home in order to create some me time while maintaining the audacity to coach other caregivers on how to live a more balanced life. And while it hurt me to know that I was perceived in this light, I completely understood where the email-writer was coming from...because just a few years ago, that writer could have been me.
I can still remember having lunch with someone I had only met once before. But we were both active in the National Multiple Sclerosis Society, and a mutual friend thought that we should get to know each other better. And so a lunch date was made.
Over lunch, my friend-in-the-making told me about how he had dealt with his wife's MS. Unfortunately, his wife had passed away a few years earlier, but what I focused on most as I heard his story was how he had continued working and building his business during the course of her illness. And I thought this was just wrong. He should have been at home comforting his wife instead of hiring a live-in caregiver. He should have been treasuring every one of their moments together. I thought he made some pretty cold and callous decisions. Decisions I knew I could never/would never make.
My lunch companion told me one last story that took place shortly after his wife's death. He walked into his synagogue on a Saturday morning. As he made his way, members of the congregation shared their condolences with him, many of them remarking, "I know how you must feel." My friend graciously acknowledged their attempts at comfort, and then, as he scanned the room, he spotted a man who had lost his own wife just weeks ago. At that point, my friend thought to himself, "No...you don't know how I must feel. But he does."
I left our lunch that day thinking that I had just met a really nice guy with whom I shared no common values. As his wife's illness progressed, he chose a path that I could never choose. It seemed like abandonment to me.
That was then. What I have since come to understand is that he and I were on the exact same path. He was just further along on it than I was. He knew things about the progression of this horrible debillitating disease that I had yet to learn. He had experienced moments with his wife that I had yet to even imagine. He knew sadness on a level about which I could only theorize.
In the years since our lunch, I've come to think of my friend as he thought of the man across the room in his synagogue -- as one of the few people who actually does know I how feel. And I am grateful for knowing him. And so, as I considered the email that I received yesterday, I realized that I was the one further down the caregiving path. There are likely going to be experiences of an emotional magnitude ahead for the writer of that email that she still can't fully appreciate or even predict at this point in her journey. But I've already seen that part of life's movie.
The reality is that our nursing homes are filled with people whose loved ones loudly proclaimed, "I'll never send you to a nursing home." It's never part of anyone's plan. But until you are faced with medical facts and personal circumstances that you also never anticipated, I grant you that it's not at all easy to understand such a decision.
(WIthout repeating past posts, if you're interested in exactly what I was going through when I made the decision to transfer Jeanne to Hillcrest Care Center, please begin reading here.)
There are so many factors in play, not the least of which is where you are on the caregiving / disease progression path. Not every caring person is cut out to be a caregiver. Once those who aren't acknowledge this, they can get on with the business of seeing that their loved one is well cared for.
My partner entered hospice care last month. In making this decision, we discussed at length inpatient vs. at home care. We agreed that if we were honest with ourselves, there were very few paths that didn't end with inpatient care. It was just a matter of deciding when to make the call.
All the best to you and Jeanne.
Posted by: steve | February 06, 2010 at 07:04 AM
Editor,
At this time, we are sending out a copy of a new inspiration/self-help book entitled The Way to Stillness: Powerful Tools for Those in Helping Professions to bloggers for review. Authors Anne Alexander Vincent and Gayle Alexander introduce the "Love Motif," a unique approach to connecting with others at a deep level in this handy little book. Covering topics like "Compassionate Awareness" and "Total Unconditional Acceptance" this book is a practical guide that anyone may use on their spiritual journey.
The link for The Way to Stillness on Amazon is: http://www.amazon.com/Way-Stillness-Gail-Alexander/dp/0984087605/ref=sr_1_1?ie=UTF8&s=books&qid=1267553673&sr=8-1
Full of rich insight and profound, inspiring life lessons gleaned from fifty years of private practice, The Way to Stillness, offers powerful tools to a new generation of helpers. It is the authors' hope that educators, clergy members, physicians, therapists, counselors and anyone involved in the mentoring process will find their own Way to Stillness and pass it on.
I'd love to send you a copy of the book for you to review on your blog. The authors are also available for an author interview.
Thank you for considering the idea.
I look forward to hearing from you.
Best,
Rebecca Brown
The Cadence Group: www.thecadencegrp.com
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As far as we can discern, the sole purpose of human existence is to kindle a light of meaning in the darkness of mere being.
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