On Mother’s Day, my mom and I will attend the late Sunday service at Anchorage Lutheran Church, her adopted congregation since relocating to Alaska in summer 2002. Afterward, we’ll go to Simon & Seafort’s for brunch. Simon’s is Mom’s favorite Anchorage restaurant (mine too) and we go there two or three times a year, on special occasions. For several years I would invite some friends to join us, but it’s become simpler to make it a mother-son outing.
Besides Mother’s Day, we’ll also be celebrating Mom’s birthday. Victoria Sherwonit – she goes by Torie – will turn 89 on Monday. It’s both a time for celebration and a time for sadness. I sense that sorrow welling even as I write these words. Sadness because Mom will inevitably ask, “Where are we?” while dining at her favorite restaurant; not just once, but two or three times she’ll need to be reminded. Sadness because Mom won’t remember Monday is her birthday. Neither is she likely to remember her age, or that Anchorage is now her hometown. And by Monday, her birthday, there’s a good chance she’ll have forgotten we had brunch together on Sunday. But she might vaguely recall our celebration when I remind her what we ate, the cards and gifts we opened.
It’s hard to believe that Mom has lived in Alaska for almost nine years. When uprooted in 2002, she had lived her entire eight decades on the East Coast, mostly in Connecticut and the last 13 years or so in Virginia. The main problem then was advanced degenerative osteoarthritis, which put Mom in constant, severe pain and also limited her ability to walk and even stand. But there were also early signs of dementia, periods of forgetting and being disoriented. Her pain medication complicated things, fogging the brain.
No longer able to care for herself, Mom initially joined my brother in rural New York. Dave did the best he could, but at the time he lived alone (he has since married). He also worked long hours, doing carpentry. Uprooted from her home, living in a community where she knew hardly anyone, and isolated for much of the day, Mom understandably had a rough time. Actually it was tough for both her and Dave.
After a few months, Dave asked for help; the arrangement just wasn’t working. So we gave Mom a choice: move into an assisted-living home or move to Anchorage to live with me. It would be a huge change, but Mom wanted to remain with family, so at age 80 she agreed to start a new life in Alaska. At the time I was married, and my wife strongly backed the idea; in fact, Dulcy encouraged it. She had recently retired and I worked at home, one of the fringe benefits of being a freelance writer. So Mom would have company and a couple of people to help her out.
Eventually we got additional help, from many sources. One of the greatest gifts, which to be honest we hadn’t anticipated, was improved medical care. Since moving to Anchorage, Mom has been treated by a wide variety of physicians, for her asthma, eye problems, severe osteoarthritis, dementia, and general health. And without exception, I believe she’s gotten excellent care from all her doctors. The staff at Providence Family Medicine Center (from receptionists and coordinators to aides, nurses, doctors, and supervisors) has been especially helpful, since they’ve been her primary medical providers for most of the time Mom has lived here. Because the center employs resident physicians who are still in training and eventually move on, Mom has had a series of doctors – four so far – but all have served her well.
The Alzheimer’s Resource Agency of Alaska has been another unexpected blessing for both Mom and me. Probably like a lot of folks, I initially assumed such an organization served only people with Alzheimer’s disease. Not true. It also assists people with “related disorders,” like my mom. As I’ve come to understand it, my mother suffers from advanced dementia, in that she’s had substantial loss of memory, and much of the time nowadays is disoriented or has trouble forming thoughts, or loses her train of thought. But she still has a sense of self and remembers me. (Though from time to time she confuses me with my brother, Dave, or her own brother Bill, or even her husband, Ed, the latter two both deceased.) Most of the time she also remembers her two other children, Dave and Karen, her two sisters, Evie and Emily, and others who’ve been central to her life.
Mom and I have worked with several employees at the Alzheimer’s agency, but the person who’s helped us the most has been Meg Smith, Mom’s care coordinator for several years. Meg and others helped me understand the importance of getting in-home assistance, especially after my marriage ended and Mom’s needs gradually increased. Eventually the agency generally, and Meg especially, helped arrange important in-home services, including relief provided by respite workers and a personal-care attendant; Francesca, Charlene, Ramona, and Irene all assisted us at different times and proved invaluable. Meg also helped out when I finally and reluctantly accepted the fact that I could no longer be Mom’s primary care giver.
Though still able to feed herself, in recent years Mom has needed help doing just about everything else, from getting dressed to moving around (in a wheelchair), washing, brushing her dentures, and using the toilet. I was the one who usually took care of those needs, day and night. And even when helped by others, I was always “on call.”
Helene was the first to recognize how the stress and around-the-clock responsibility were wearing me down, putting me on edge. Though she supported my care giving in all manner of ways, my new sweetheart gently pointed out the toll it was taking.
After much agonizing and many conversations with Helene, people in similar situations and those who work in care-giving for elderly adults, I admitted to myself the hard truth: Mom’s gradual but steady decline, both physically and cognitively, had reached the point where I was overwhelmed by the responsibility.
Encouraged by Helene, Dave and Karen, Meg, and others familiar with our situation, I shoved aside my guilt and a nagging sense of failure. Armed with a list that Meg provided, in fall 2009 I visited several assisted-living homes in the Anchorage area.
That December, I made my choice: Mom would move into a place on the lower Hillside, called Immaculate Conception. It was exactly the sort of assisted-living arrangement I wanted: a house in a quiet residential neighborhood, with only a few other clients. As a bonus, owner Florence Cuanan is also a registered nurse.
Again, Mom has been well served, thanks to Florence and her staff (most notably Lorna and Pat, who’ve been there since Mom arrived). Their good work and Mom’s great courage and grace in accepting this change have largely erased my own misgivings, anxieties, and guilt. I made a good choice, one that was likely overdue.
While I’m thanking people, I can’t forget the good folks at Anchorage Lutheran Church, including Pastor Bill Warren and more recently Pastor David Reinke, who took over after Pastor Bill retired. Several others in the congregation have reached out and helped Mom, particularly Christine Gill and, more than anyone, Alice Sears. Alice has been an angel to Mom, and the best of friends. She has our deep gratitude.
One of the few blessings of Mom’s dementia is that she has, I believe, forgotten that years ago I left behind my Lutheran roots, the religion in which I was raised. Mom tried so hard to bring me back into her God’s fold, while worrying deeply and praying so fervently for my soul. It was hard on us both. Now that particular anguish has eased.
Mom’s fellow worshipers at Anchorage Lutheran seem to forgive, or maybe simply accept, the fact that I bring her to church only a few times a year. They also seem to accept that I’m following a different path. Or perhaps they just aren’t sure what path I’m on. In any case, they continue to welcome both Mom and me into their midst on those few occasions we attend. For my part, I don’t feel as guilty or judged or uneasy while inside a church these days. That too is a gift.
Now that I’m no longer Mom’s primary caregiver, I’ve resumed being simply her son. This is no small thing. I visit her a couple of times each week. We talk a bit. Sometimes we watch DVDs of Anchorage Lutheran’s Sunday services (kindly delivered by Alice or Christine). Other times we might call one or both of Mom’s sisters, or other family members, or one of her dear friends from long ago. I’ve learned that Mom can more easily carry on a phone conversation when I’m there to fill in details, answer questions, and so on.
Whatever else we do, nowadays I always spend part of my visits reading to Mom. She used to be a voracious reader, but now her attention quickly wanders. Or disappears somewhere.
Reading has become one of our shared joys. Sometimes I read cards or letters that friends or family members have sent. Mom’s older sister, Emily, has been especially good about regularly sending short notes. And then I’ll read from a book. We’ve already finished the first novel in Jan Karon’s Mitford series (all of which Mom has previously read a time or two and continues to love). And most recently we completed “90 Minutes in Heaven: A True Story of Death and Life,” the best-selling story about the experiences of a Baptist minister, Don Piper. Now it’s time to return to Mitford and a Father Tim novel.
“I love it when you read to me,” Mom says. “And I love reading to you,” I assure her. She smiles to hear that and I smile back. When Mom first came to Alaska, we would sometimes write together, in our respective journals. That ended when she began to have trouble maintaining a line of thought. Eventually Mom had trouble even writing her name. She would get stuck on a letter, couldn’t seem to recall how to form it on the paper. That was hard for us both. Sometimes I got impatient, just as I occasionally got impatient when she wouldn’t take all her pills (though who could blame her, with up to seven or eight at a time) or when she waited too long to let me know she needed to use the toilet.
Now and then I still feel badly that I sometimes scolded my mom when, after all, she was doing her best, or simply didn’t understand what she was supposed to do. She seems to have forgiven me. Or she’s forgotten, which is a kind of forgiveness I suppose. And I’ve mostly forgiven myself too.
Now, less stressed, I’m easier on us both. I’m more relaxed in general, maybe even more fun to be around.
Writing all of this, I recall that recently a friend asked what advice or wisdom Mom had shared with me about getting old. The question made me uneasy, partly because Mom and I didn’t talk much about that stuff before she began losing her memory, her ability to express her thoughts and ideas. Now it’s too late. I regret that. Still, as I told my friend, Mom has taught me lessons: about courage, hope, tenacity, grace, sweetness, and love.
There was a time, especially in my 20s and 30s, when I held lots of anger toward my mother. I judged her harshly for some things that had happened in my life. But as we’ve both gotten older, I’ve been able to better understand that both she and my dad did the best they could (though family wounds, sometimes deep ones, seem to be part of the human experience). And I’ve seen what I consider to be more of her essence: a sweet, gracious, loving person.
Besides raising a family, Mom once upon a time did lots of volunteer work, especially after retirement and Dad’s death. Before her body and mind were crippled, she was active in church, active in her neighborhood. She visited shut-ins, bringing food and conversation, generosity, and her warm smile. She was the neighborhood’s designated “grandma” and babysat young children. Her inability to help others, as much as her loss of independence, became a troubling, saddening, depressing thing. She often felt helpless, sometimes hopeless. And like many who were caregivers for most of their adult lives, Mom initially had trouble accepting help when her turn and time came around. I think she more easily accepts it now. Or maybe she just doesn’t think much about it. Another way of forgetting, of letting go.
Around 10:30 Sunday morning, I will wheel Mom into church and we’ll participate in the service the best way each of us can at this point in our lives, and that will be a blessing. Afterward we’ll head over to Simon & Seafort’s and I’ll help Mom order her meal and cut her food and we’ll open some of her Mother’s Day and birthday cards and gifts and I’ll occasionally ask “How are you doing?” And she’ll say, “Good, how are you?” And then she’ll ask, “Where are we?” And I’ll say, “Simon and Seafort’s, your favorite restaurant, remember?” And Mom will smile brightly and say, “Oh yeah, that’s right.” And we’ll talk about nothing much and yet everything necessary will be said and I’ll feel this familiar mix of sadness and joy and we’ll sit quietly and lovingly together, mother and son.