My nerves are finally settling down. Hurricane Irma did more than disrupt my life and my family’s here in the Tampa Bay area. It struck deep into my psyche. And I was not alone. The anxiety on the streets was palpable as people dashed helter-skelter from one place to the next looking for gas, supplies, water, and food. All the while we were hoping for some plan of protection or escape, no matter how makeshift.
My wife Martha and I moved to St. Petersburg in 1975 and over the years we rode out a number of hurricanes, none of which was a direct hit on the area. But Irma was different. It was a massive tiger clawing its way through the Caribbean, chewing up everything in its path. And I could see in its eye the reflected image of my house and my children’s homes. I boarded up my townhome, but that quickly felt like a house of cards. We searched for a shelter but scratched that idea. Let’s get out of here! So my daughter’s family and I trekked six hours to Jacksonville, camping out in a motel there. It, too, was under a hurricane warning, but the eye wasn’t coming that way.
I haven’t felt such raw anxiety since Martha was diagnosed with Alzheimer’s. That was twenty years ago this week, on September 23rd, 1997. She’d just turned fifty.
As I reflect on this “20th anniversary” and the feelings that echo between then and today, I wonder, “Haven’t you learned anything, Carlen?” I guess that’s a major lesson from my time as Martha’s caregiver, for I used to think that “once learned, always learned.” But that’s not been the case for me. Irma clearly shows me that I still struggle with issues that I thought I’d figured out and filed away.
For example, I remember when it dawned on me that there’s a vast difference between believing in God and in believing God.
Alzheimer’s or any crisis, such as Hurricane Irma, is no respecter of persons or religious beliefs, whether you are Buddhist, Jewish, Muslim, Christian, Hindu, agnostic, or atheist. For when a life-altering crisis slams you to the wall, trying to cope with it and make sense of it through systems of belief—such as religious theologies, secular philosophies, or scientific theories—is useless. At least it is for me. This kind of crisis willfully and with abandon attacks you heart, mind, body, and soul.
Twenty years ago, as Martha and I grappled with the prospect of a future worse than bleak, I was forced to trust something beyond my own resources, beyond my emotional, intellectual, and physical capabilities. Otherwise I would have collapsed. I suspect most of us who struggle with a serious crisis must discover for ourselves what that “something” is, regardless of background or belief. For me, that something is God. It’s that Creator who transcends my comprehension and whose intimacy flows more deeply, more broadly, and more gently than I’d ever imagined.
So what did it mean for me to believe God in the midst of our Alzheimer’s crisis? I know what I didn’t believe. I didn’t believe that God loved us. How could I, after being so stigmatized by this devastating news? Truth be told, all my life I hadn’t believed I was loved by an all-knowing, all-seeing, all-judging God. Yes, I believed in God and I said a thousand times and more that God loves me “for the Bible tells me so.” But that had gone no further than my lips, until…
…Until some voice, some force beyond me, kept whispering in my ear, kept stirring my heart and mind, kept raising mentors along the way until I knew that I am loved, that despite all else Martha and our children are loved. God’s intimacy searched out the darkest realms of my heart and mind, healing the pain with its gentle touch.
That’s what it means for me to believe God. To know that I am loved, regardless of my circumstance or my state of mind. To trust God fully is often still difficult, but the mere act of wanting to believe, of trying to believe, of seeking to believe has proved invaluable. It’s not unlike my boring football practices long ago that eventually paid off in some future game.
Much of what I continue to learn I’ve already shared through these blog posts and in my book, but this “20th anniversary” seems to be a good time for a quick look back. Here are some other thoughts in no particular order…
>> My No. 1 rule for caregivers: If you’re going to take good care of a loved one, then you must learn to take good care of yourself. Sounds simple but it isn’t. To also take care of yourself doesn’t have to mean that you’re taking less care of your loved one. This doesn’t have to be a zero-sum game. In fact, the more I took care of myself, my thinking was clearer and my burnout was less, and I was better able to care for Martha. I didn’t understand this for a long while.
This requires help from family and friends, which I was reluctant to ask for at first. You may remember that Rachel and David offered to stay with their mother one weekend a month. That was the best gift I received, which I usually spent at nearby St. Leo Abbey. (By my quick calculation I spent over 300 nights in one monastery or another during the first decade living with this insidious disease.)
>> Talking about our children, I feel much closer with David, Rachel, and Kathryn today than I may have otherwise, had we not gone through this crisis together. As for their feelings, I’ll let them speak for themselves. (At the time of Martha’s diagnosis, Kathryn was still in high school while the other two were in college.) Early on, I began giving them copies of my journal notes to let them know what I was thinking and feeling and where I was heading. (Rachel today says she was sure I was going to become a monk. LOL.) We talked fairly frequently, allowing each other to vent. Not that I would wish such a crisis on anyone, for there’s got to be an easier way to keep the family close.
>> Each of us needs a community of support during a crisis, whether we realize it or not. My first full day back in St. Pete after Hurricane Irma passed, on Tuesday September 12th, I had a vague feeling of needing something. So I went looking. I wanted to read the morning paper over a cup of coffee surrounded by people, whether I knew them or not. Kahwa’s coffee shop in our neighborhood was overflowing with no place to sit, so I drove up Fourth Street but every place I passed was closed—McDonald’s, Starbucks, Burger King, Krispy Kreme, Chick-fil-A, Wendy’s, Dunkin’ Donuts. After driving a few miles I found an Einstein bagel shop open.
Finally, I found a community of people relaxing, talking, and occasionally laughing. I didn’t know a soul there, yet I knew everyone. God is here in the newbie clerk focusing on her cash register; in the mother and daughter over at the corner table; in my first bite of bagel and cream cheese; in the staff fixing sandwiches with the precision of a surgeon; in the threesome huddling over a late breakfast; in the coffee black and hot.
Leaving, I said, “Thank you for being open,” to no one in particular behind the counter. The world stopped briefly as every clerk and cook looked up and smiled at the same time. We all knew. We all were grateful. We all were given one more day of normalcy.
>> Knowing what I know now, I would ask a couple of Martha’s good friends to help organize a schedule by which a network of her friends would take her places and be with her on a week-in, week-out basis. Her friends did do this, but it was more random and occasional than structured and organized. Only through our sister-in-law KK’s insistence did Martha get involved in an art class, an opportunity to which I’d been blind.
I would share this with any primary caregiver: “Don’t be shy about calling on your family and friends.” They often want to help but don’t know how. And they can be just as responsible and protective as you, maybe even more so than a “tired-and-worn-out you.”
>> All my life I’d thought that illnesses and diseases were physical issues to be dealt with as such. And I suspect I’m not alone in this thinking. But I soon discovered with Alzheimer’s, as I now think with any serious crisis, that there are embedded emotional, psychological, and spiritual issues that need to be recognized and resolved as best we can if we want to have any kind of healing. One example: Our learning of the absolute need to forgive. Why? Because when we continue to carry resentment, resentment carries the seed of our own destruction.
>> One of the best pieces of advice I heard early on was, “Carlen, be gentle on yourself.” Caring for my wife with dementia was beyond frustrating. I wanted solutions, not this escalating set of problems. And when I couldn’t resolve some issue, I often felt guilty. More than a few times I wanted out of this role as Martha’s caregiver. Indeed, I may have walked away had I not been reminded of this advice over and again: “Be gentle on yourself, Carlen, be gentle.”
>> Learning to be quiet with Martha was difficult initially, but worth the investment of time, energy, and thought. You may remember, we often sat side by side, holding hands as we meditated for 20 minutes or so in the morning and in the evening. Over time, I could feel Martha’s agitation and anxiety diminish to where she seemed to be in a safe place. And as she was, I was. An unexpected gift was the intimacy that wove its way through us both, to the point that on occasion I could sense what she was feeling and thinking.
>> I’ve been asked why I revealed so much about the issues internal to Martha’s family and mine. I’m not sure other than I’ve decided that every family is dysfunctional; it just depends on the degree. I felt that by sharing some of our embedded issues and the ways we dealt with them, or not, it might help others do so within their families. To clear the air, so to speak.
>> Stop! Look! Listen! I heard this advice in the first grade when taught how to cross a street. It’s also good advice to heed when deep in a crisis. I slowly learned to pay attention to what’s going on with Martha. To not impose my agenda; to try to put myself in her shoes; to slow down. I also learned, although more slowly, to pay attention to what’s going on within me, to not beat myself up, to know that I am loved.
I’m going back on the road next month. If you’re in the Nashville area on these dates, or in my hometown of Cookeville, I’d love to see you:
Sunday, October 15, 9:30am-10:45…I’ll be sharing our story with the Wesley Forum Sunday School group (Room 391) at Brentwood United Methodist Church, 305 Franklin Road, Brentwood, TN.
Monday, October 16, 11:30am-1:00pm…A lunch program will be drawing together various Alzheimer’s-related groups to hear and discuss our story. It also will be at Brentwood United Methodist, which is making available a free box lunch. If interested, please email Karen Stevens and she will be glad to send you more information on registering.
Sunday, October 22, 9:45am-10:45…For some reason, my grandfather’s Sunday School class of old has asked me to come back. Maybe they’re hoping I’ll get my story right this time. After all, with a name like ‘The Backsliders’ the class is a forgiving group. They are at First United Methodist Church in Cookeville, TN, 165 E. Broad Street.
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P.P.S. My book was published a year ago next week. A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be found on Amazon or ordered from any bookstore.