We shall not cease from exploration, And the end of all our exploring Will be to arrive where we started, And know the place for the first time.
T. S. Eliot. “Little Gidding.”
I’m at a unique place in my adulthood, facing a life-changing event. A little over ten months ago my beloved partner and wife was diagnosed with dementia. And so I’m writing this to get my emotions in print, and asking my readers to listen to my experience from the perspective that what I say might be of value to them.
I learned years ago how to manage difficulties and stress, armed myself with scholarly and pragmatic information on the subject, and for a number of years even taught stress management. Indeed, I have a reputation as a "cool customer." Just before Thanksgiving, however, I lost my “cool” and for a period of two to three weeks was nearly a basket case of stress--unmanaged stress, that is.
What was the problem? In hindsight, there was just one: lack of the expert information necessary to make adequate decisions on a multiplicity of issues.
Before I surface the issues I faced, though, I want to share with you a bit of personal information. I hope to suggest, eventually, that in spite of my good fortune, I’m not a unique case and that my insights can be generalizable to anyone and any situation.
First, there’s no question but that I have an unusual set of resources for the long-term handling of my wife and her dementia. I bought long-term health care in large amounts nearly twenty years ago, coverage that will handle 90% or more of the cost of care. I also have wealthy kids who stepped up to the plate and to a fare-thee-well, said they'd handle all expenses above the insurance.
We also live in Minnesota which, frankly, along with Massachusetts, Pennsylvania, New York and California, has some of the finest medical resources in the world. In addition, I've been well networked into the University Med School for perhaps 15 years, as a result of a bout with prostate cancer. Further, I completed my doctorate at Minnesota and I know how to work that entire educational/medical system to achieve most any set of personal objectives.
On top of all that, my son-in-law is exceptionally well networked within Massachusetts, including the Harvard Med School where he taught for a number of years. My daughter works on a part-time basis with a family Alzheimer's organization that funds dementia research. She has an unusually large network of highly knowledgeable friends throughout the Boston community, one of two or three of the great educational/medical centers in the entire world.
At this point, you might be asking why I was stressed at all with resources of that quality.
First, though I had done extensive study of dementia since my wife's diagnosis, I had no real experience with its debilitating and time-consuming requirements. One spouse of a dementia patient commented that taking care of his wife was like a 36 hour daily job. I now have no difficulty believing that 36 hours of care per day might just be needed.
Furthermore, I was unaware of the many forms of debilitation that dementia can take. I was profoundly uncertain what to expect, and had little awareness of how to manage those difficulties. For example, I didn't know how to gain and evaluate home care support, much less assess the services of long-term care institutions.
The stress came to a head in Boston over Thanksgiving when we were visiting our children and grandkids. I learned that my wife didn't recognize the kids, wasn't familiar any longer with their home setting, needed help making all kinds of decisions, including clothes to wear, what to eat, where to find food in the kitchen, and couldn’t manage the washer and dryer, one of her usual contributions to our visit. Furthermore, she forgot information as soon as she got it, left things lying around and couldn't find them when she needed them. I’d guess I spent two hours every day just looking for things she’d mislaid. In addition, she was quite insistent that she thank the "family" that had invited us for Thanksgiving, and insisted on talking with them about that three or four times a day for the entire week. In short, she became highly dependent on my care. But my stress went through the ceiling listening to her talk to our daughter as that “woman.” It was as difficult for our daughter as for me. Along with those difficulties, I faced the pressure generated by multi-tasking demands stretching me to the breaking point.
When we got back home to the Twin Cities where life could take some form of “routine,” it became clear that in spite of my cool head, I had a lot of work to do to resolve the burgeoning stress load, manage my business and go about life with some sense of normality. My work is my passion. And life without passion is death.
But what I needed most when I got home was a terrific amount of information about care, medical support, institutional support and the managing of my wife’s medications.
Setting to work, I also learned that a prescription from the neurologist would be required for our insurance to cover needed services. There followed an extensive process for that to take place. The neurologist needed more than his medical diagnosis. He needed evaluations from an occupational therapist, a physical therapist, and a speech therapist. Lacking those evaluations, he would be unable to write the needed prescription for care in order to provide the appropriate data for our insurance coverage.
Thankfully, the therapists were magnificent. They provided me with an amazing depth of information and . . . invaluable contacts. Almost immediately I sensed my stress level heading south. They put me in touch with a university social worker who provided me with insights into nursing care, alternative living arrangements, etc. The social worker also provided contacts with the Minnesota Board of Aging which provided free information regarding any and all aging or dementia issues. Piece by piece and bit by bit I gathered the information and created the network necessary for the decision making to support my wife and myself.
I should say, here, that I'm well aware that the kind of resources I surfaced in just a couple weeks is highly unusual. Still, some states are beginning to think about these issues and community organizations are beginning to put them in place across the country. Having lived in a number of states, though, I'm also aware that services in Minnesota are unique. Indeed, when conservative friends bug me about our state's “high” tax rate, I usually suggest they spend a couple weeks in Mississippi, Alabama, Louisiana, South Carolina, or even Arizona, where services are nearly non-existent. With my own family background from the South, I'm too familiar with that religious mythology regarding the poor, "who are always with us," and for whom we have little responsibility. My ethnic family, the Scotch Irish, have little sense of community responsibility and that shows up in the poverty of education and services in those parts of America.
And so with all my new contacts in place, and with a brain overflowing with information, my stress went south fast. I've remained fairly stress free for well over a week, and am putting steps in place to more effectively manage my life as the dementia gradually takes my beloved wife away from me.
What have I learned about life-changing events and how to manage them?
To a large degree stress is generated by seemingly overwhelming problems that have no ready answer. I had all these balls in the air, wasn't certain how to think about them or frame them, couldn’t find the needed resources, and was going nuts about the lack of resolution. The brain can handle only so many unresolved, significant, personal problems at a time.
Second, we need relevant and expert resources in order to make significant decisions. What bugged me was the conventional wisdom on dementia and the war stories about nursing homes. I needed trustworthy, expert data, and I intended to put my concerns on hold without that information.
Third, locating expertise is a difficult task. I've conversed about this issue with my son-in-law, the research physician, for years. You really have to network, dig, talk, study related articles and research materials to find trustworthy information. Although there's a ton of web data on most any subject, much of it is questionable. I'm skeptical of information and opinion until I can identify real expertise. That can be quite difficult.
Finally, once you've got good data framed it in ways that can define your problems, the actual decision making is quite easy. It's often little more than setting priorities and following through.
What’s my real learning from this terrifying experience? Without trustworthy information, resolution of any problem is nearly impossible.