Passive resignation or active re-creation?

In the brief time that I have been a part of this network of courageous caregivers, and the longer period of my wife's progressive descent progressive descent into dementia, I've ruminated long and hard about how to be a more effective aide to my loved one. As mentioned previously, several of you have been a huge help in my mission.

I have felt the need to clarify my thoughts in writing, almost as a form of therapy, and then to share them. I was spurred on to do this via the wonderful, steady support of Lilly, better known to this group as George's wife, and Judi Mahoney. Both have vastly contributed to my quest and in turn received my best effort to help them succeed in their own.

I received lately from Lilly a reference to a posting a while ago that I missed at the time, by Bill 2001, detailing his heartbreaking struggle in the prime of life to come to terms with his wife's incurable maladies. The dramatic title: "The Cavalry Is NOT Coming." He recounted his gradual recognition over more than a decade that the outside help he desperately wanted was not to be, and that this very insight hekped restore his spirits and improved his courage and capability to deal with the tragedy. I re-read this message and reflected on it, coming to the following conclusions: Yes, for most of us there is no outside cavalry to rescue us from the difficult tasks of caregiving, It can be a bitter pill to swallow, but after doing so we must plot the path to adapt and strengthen ourselves to become our own cavalry.

Attitude is everything. I subscribe to Anais Nin's maxim, "We don't see things as they are, we see things as WE are." This is not to deny "reality"; often, for better or worse, those we care for do that for us. Yet we can alter, to preserve our self-hood, our efficacy, and even our own longevity. We can and must take control of our responses to adversity, while seizing opportunities for joy and self-enhancement.

We all agree that life is not a smooth continuum. It is a series of stages, in each of which there are likely to be bumps, some serious. Childhood, adolescence, , marriage, parenthood, career progression et al. are prone to crises. I've had my bumps along the road, those of my wife nearly insurmountable. At last, as we reach old age, we believe that retirement will be easier, only to learn that it can be the bumpiest stage of all,

Personally, I (we) can scarcely complain. We had a wonderland of retirement, despite recurrent health difficulties my wife endured. We shared exhilarating travel adventures near and far. Yet the 80s (we're now 88) did their job on us, foreclosing travel and other things we once enjoyed. And then it came--my wife's near immobility and invasive dementia.

Of course I had to change my notion of retirement, abandon many of my prior indulgences, as I entered the final, rocky stage of life. And I needed to recognize that as a solo caregiver, with tactical assistance from a host of caring people, professional and amical, I could manage what became the sole mission of my life--to enhance my ailing loved one's life. And to accomplish that, to safeguard my own.

I won't pretend it has been easy. My A.D.H.D. and assorted ailments needed to be kept at bay. But, aided by helpful suggestions from others, many within the Mayo Connect group, I tried to develop a coping strategy. I recalled the title of a brilliant book I had read eons ago, "Drift and Mastery." I decided to take stock each day of the problems I encountered and to assess how many I had mastered, how many drifted past me.

"Mastery" became something of a watchword in dealing with the often dark kaleidoscope of controlling problems--and of controlling myself! Gradually I believe I have progressed. I'll never achieve perfection, comforting myself with the aphorism made famous by Barack Obama, "the perfect is the enemy of the good."

By and large, I think I have mastered the sadness of being alone. In low moments I turn to the inspiration and example of people near and far, especially you, the heroic caregivers, many whose problems dwarf my own. "Bonding" in one form ao another is my rainbow.

I've developed practices to counter discouragement and remain positive, thereby strengthening my cavalry-of-one. One such, which many of you also emply, is to seek to help others outside your household, a diversion which mysteriously strengthens ourselves. I do not want to extend this already too-long posting by enumerating my idiosyncratic tactics, though I invite you to share yours. I'll simply mention that I continue to heed Kahlil Gibran's exhortation to "Awaken each day with a winged heart and give thanks for another day of loving."

To those of you who have been combating even graver problems over a longer period, my heart goes out to you. I know that my own short remaining time will be ever more harrowing, and I fear that a similar fate awaits many. It may be of some small consolation to know that you will "never walk alone,"

Keep the faith,

Tom G [ @pcetng0202]