Honoring the Body — Remembering Ruth Gold: July 6, 1921 – April 19, 2017

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Beautiful Mom, about 1948.

For most of my life, my mother was my best friend. As she began to leave us, almost a decade ago now, the inexorable blade of dementia sliced her memory into ever smaller pieces. During these years of decline, I often wondered how I would endure, who I would become without her richly textured presence in my life. What I witnessed was remarkable: the very essence of who she was became ever more finely distilled, until only a small but brilliant shard of light remained. Slowly, I began to understand — it was enough. Even though I no longer had access to all the pieces of my mother, the stories and memories I had come to know over the decades, what I did have was lovely. In truth, it was a strange and beautiful gift. Not a gift that either of us would have chosen, but a gift nonetheless.

Not every dementia story unfolds the way my mother’s did, a truth which makes me grateful on multiple levels for this particular and exquisite experience. For the last five years, I have wandered through grief, shed copious tears, railed at God for the cruelty of this growing epidemic in our land and across the world. I have also fallen to my knees in gratitude for the shining core of her, that glorious flame that blazed up and out and into the core of every single person she encountered. As the limits of her world grew larger and darker, as she lost the desire to eat, to drink, to walk — even then, she found a smile, a sweet word of gratitude, an exclamation of complimentary joy. “You look so beautiful today!” she would say. “Thank you so much for your help.” Not one other syllable made sense toward the end, but those words of kindness remained.

Ruth was born in Duncan, a small logging town on Vancouver Island in British Columbia, Canada, the second child and first-born daughter of Harry and Elsie Hobson. They gave her a long, cumbersome name, which included the names of some female relatives who eventually left mom two small diamonds. She gave those to me — and I managed to lose them both. Mom’s full name was Edith Lemody Ruth Hobson and she was a beautiful baby. They called her Ruthie.

Two years later, the Hobsons gathered up their little family and boarded a train, with siblings and cousins, and emigrated to southern California. Two little boys, my little mom, a second daughter ‘in the oven,’ two parents, three maiden aunts, a cousin or two, and an elderly grandfather arrived in 1923 and settled into a variety of Los Angeles neighborhoods. Mom rode the street car, roller-skated or walked all over what is now Hollywood and graduated from Hollywood High School in 1938. She went to UCLA for two years, and then quit when her family ran out of money; she always regretted never finishing her college career.

Mom’s father was a difficult man, and her mother worked. My mom became a surrogate mom to her siblings and found safe harbor in a local Methodist church. She met my dad there and they married in 1941 when mom was 20. I was born four years later, while they lived in San Diego. My dad taught math and physics at a military academy in that town during WWII — he was deemed entirely too spindly to join the army. In 1947, my brother Tom was born in a tiny town in central California where dad had an in-between teaching job while he waited for an opening at Los Angeles City College. When that job opened, we moved back to Los Angeles and bought our first house — a small, post-war tract home in North Hollywood. I was four years old.

All four of us attended that old Methodist church in downtown LA for the next eight years. I loved that place. My dad was the pianist, my mom sang in the choir, my brother and I went to Sunday School. It was at Trinity Methodist that I began to love choral singing — at the tender age of six. My mom made lifelong friends in that community and was the last one left from the old gang when she died last Wednesday afternoon.

Everywhere we lived, everywhere we worshipped, my mother made friends. Fast friends. I described her to the caregivers where she lived as, “The most flaming extrovert I have ever known.” Her gregarious and compassionate nature made her an excellent neighbor, an even better friend. In the earliest days of her dementia, I discovered that she regularly purchased small boxes of candy to take to her neighbors, to let them know she was thinking about them, to tell them they were loved.

In 1955, when I was almost 11 and Tom was almost 9, our youngest brother Ken was born. One month later, we moved across town to a different valley, from San Fernando to San Gabriel, buying an English Tudor style home in Glendale, CA. I endured (and enjoyed) adolescence in that home, learned to drive on the curvy hills of Forest Lawn Memorial Park, and drove off to UCLA at the age of 17. Wanting to get my youngest brother into what they thought was a better school district, my parents moved to north Glendale while I was in college. That house was never my home in the same way that the previous two had been. I married a year later, graduated six months after that, and then my husband and I sailed off for two years of living and working in Africa.

While they lived in Glendale, my parents were active members of Glendale Presbyterian Church. Each of them served on Session, my mom on at least one pastoral search committee. They thoroughly enjoyed the Sunday school teaching of Paul Jewett, then a theology professor at nearby Fuller Seminary. My mother read widely, with a lively sense of curiosity and a commitment to growing in her faith. She read everything ever written by C.S. Lewis, Catherine Marshall, and Paul Tillich along with a long list of fiction writers. She instilled her love of language, reading, writing and beauty into the core of me at a very young age. 

She was also a ton of fun. She had an earthy sense of humor, loved to laugh, introduced us kids to British humor early on (anyone remember the “Carry On” movies??), and threw grand parties. She also decorated our homes on very little money, made most of my clothes and baked great birthday cakes. One of my daughters said to me last week, “One of my strongest memories of Momma was that she was always, ALWAYS, so happy to see me.” And that was real — she took delight in her family. De-light. Yes, she worried about us (especially Ken, whose life was difficult at many points and who died eight years ago.) But she loved us all and we knew it. Deep down, we knew we were loved. It was like oxygen — something that surrounded us always, something that gave us energy and life.

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Five generations – from lower left – Elsie Hobson, Ruth Gold, Diana Trautwein,
Lisa Fischinger, 
Ben Fischinger — taken in Orange County, 1991

My parents worked hard to create a good home for the three of us. There was one salary in our home, and that one a teacher’s salary, so we didn’t do fancy things. But we listened to all kinds of music on my dad’s home-built hi-fi set (or from his fingers at the keyboard), we camped all over California, and we enjoyed extended family gatherings on both sides, especially gatherings at some of the beaches along the southern California coast.

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Mom, doing what she loved more than almost anything else: boogey-boarding, Huntington Beach,
sometime in the 1980s, I think. She would have been in her early 60s.

Toward the end of his career as a professor and administrator at the junior college level, my dad had some serious health issues that required them to move out of the valley and closer to the sea. They lived in Oceanside for two years, then settled into a lovely town home in Mission Viejo, in Orange County. They loved that community and lived there for about fifteen years. In 2002, we moved them to a retirement community in LaVerne CA. My father died two and a half years later in February of 2005. My mom lived there independently until 2012, when Alzheimer’s put her into assisted living. The next year, we moved her to The Samarkand dementia unit, just ten minutes from our home here in Santa Barbara. 

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My parents, when they lived in Orange County

While they were in Orange County, I took the train south once each month for a long midweek visit. After they moved to LaVerne, I drove south monthly, then twice monthly, and stayed with our daughter, who lived about 30 minutes from there. All of those visits were an attempt to be as present as I could be with the two of them, and then with my mom, while their bodies breathed earth’s air.

Those bodies of theirs were holy to me, often in ways I didn’t fully understand. They had birthed me, loved me, tended me when mildly wounded or critically ill, clothed me, fed me and gave me away to my husband. (Yes, that is an outdated term, one that I no longer use, but it’s the truth of my lived experience in that season of my life.) I was with my father three days before his death, praying the blessing of Aaron over his unconscious, frail frame, telling him how much I loved him and how grateful I was for his care for me. When my brother called to tell me he had died, I asked that his body remain in the room until I could get there. Our bodies are supremely important collections of cosmic dust; they bear the image of an invisible God, they carry our stories, our selves. I wanted to honor him by honoring what remained.

Last week, I had the privilege of doing the same thing for my mama. Her journey took eight days, and every one of those days, I was by her side. Most of the time, I sat in front of a window, using only natural light. I put Pandora onto a hymn station and played it for hours. I finished a large crochet project. I called for more meds, as needed. I got up and blessed her face, stroked her shoulders. I ate the lunches I packed, I took occasional walks. I thanked every one of the Hospice team who came and cared for her so lovingly. One woman offered sponge baths, one offered quiet company, another brought her guitar and sang. The nurses were supremely skilled and compassionate, as were the caregivers at the facility. My pastor came twice, my friend Sherry, Samarkand chaplain for over twenty years, came daily.

Room 62 became holy ground during those long days.

At 4:32 p.m. on Wednesday, Sherry and I stood beside her and my friend said, “Look! Her eyes are open!” Those eyes had been closed for most of the previous five days. Her breathing was quite labored at this point, but as her eyes flew open, the noise stopped. She gasped twice and looked right into my eyes as I blessed her, thanked her, loved her. And she flew. I mean she flew to Jesus in those moments. I had been visualizing my father, my brother, her siblings, her parents and so many of her friends all around that room for days. And I do believe that in that moment, she saw them. And she was not afraid.  

All those dear ones welcomed her home — with love, joy and laughter. This I know, in the deepest part of me, this I know.

We will bury her on Tuesday morning, dropping her earthly remains into the grave plot she will share with my dad. We will hold a special service of worship to celebrate her life on May 20th at 2:00 p.m. in The Chapel at the Samarkand, the place that she called, ‘my church.’

Over and around the fatigue that I feel at this end of the journey, the strongest emotion in my heart is gratitude. It absolutely overwhelms me at some moments. There is sadness, yes, there is sadness. But over and around and in between everything else, there is thanksgiving. For 95 years, she graced this earth, 72 of them with me in the center of that grace. 

Thank you, Mama. And thank you, God.

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November, 2015, last formal portrait

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April 7, 2017

First, the Tomb — SheLoves, February 2017

The silence at this blog has been rather deafening thus far in 2017. Part of the reason for that is the event described in this essay. I wrote it for SheLoves, that special place on the internet where I am privileged to write once each month. Please start here and then follow the links over there to join in the conversation.

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The rain falls steadily, beating against the translucent plastic of the skylight across the hall from where I write. A drumbeat that reminds me that fruitfulness requires dark, wet days. Lots and lots of dark, wet days.

Life continues to teach me that there is no resurrection without the darkness of death, there is no rising without first being down. Sometimes that down-ness is imposed on us — by life, by circumstance, by some kind of struggle, which we did not deserve or earn. Other times, we trip and fall, choosing unwisely or forgetting what we know to be true. No matter what has brought us low, however, the truth of it remains: there is nowhere to go but up.

 I am watching closely as my mother winds down for the last time in her long life. We moved her this week — again. Fifteen years ago, we moved her and my dad from their lovely retirement home in Orange County CA to a smaller, 2-bedroom apartment in a senior community nearer to family. Three years later, after my dad’s death, we moved my mother to a 1-bedroom unit in the same facility. Eight years after that, we moved her across the street, into an assisted living studio. One year later, we moved her 120 miles north, to a single room with bath, inside a dementia unit, minutes from our home.

Now, four years further down this journey toward death, she is in a still smaller room, one with a hospital bed and an RN down the hall. We moved mama into skilled nursing last week, sorting through the debris of her life one more time, parsing her existence into smaller and smaller pieces.

I hoped she would be oblivious to this change. So much of her cognition is gone, so many pieces missing from the beautiful puzzle that is my mother. But she knew. And she was frightened and confused, wondering why ‘her family’ wasn’t nearby. Though she couldn’t tell you a single name, she somehow knew the residents and the caregivers in her 16-bed assisted living wing. Now she is part of a much larger space, with many more people, many more wheelchairs, longer distances to travel from bedroom to activity center to dining room. . . 

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Yes, it’s been a tough few weeks, friends. We’re at the last bend in the road. Please do come on over to SheLoves and read a bit more about this journey.

The Truest Advent

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I sit and watch the light play across the beautiful angles of her face. Even at 95, those cheekbones are breathtaking. She is tired today, battling a mild infection, with little to no appetite and even less energy. The sharp angle of the winter sun is unexpectedly flattering as it gently flickers through the window, and I draw a sharp breath as those too-familiar tears begin to form behind my eyelids. 

“Oh, Mama! I love you so. Please, Lord, let her go to sleep and wake up in the New Creation. Enough, okay? Enough.”

But who really knows how much is enough? I don’t have any special insights, only my own bedraggled emotions and growing fatigue. To me, it feels like it is time. Time to be released from this ‘body of dust,’ time to rest from the struggle, time to breathe in and never breathe out again.

We did not go out to lunch today; we barely made it from the dining room to her own sweet space, with its lounge chair in the corner, by the window. “My arms!” she cried softly as we walked. “They ache.”

Truth be told, everything aches. Every cell in her body.

As she slept in that chair, I moved my hand slightly, the one that she was clasping with both of hers. She roused a bit, turning to look in my direction.

“Oh, Mama! Thank you for being such a good, good mother,” I cried.

She didn’t understand me, so I said it again, more slowly, more loudly. She smiled slightly and said a simple, “Thank you.” Somehow her half-sleepy state made the usual questioning unnecessary. There were no confused looks, no puzzled frowns. None of this response: “I’m your mother?? Really??” 

None today. None at all.

One week ago, that’s all I heard. I came home shaking my head at my husband. “I don’t know how much more of this repetition I can navigate! We spent our entire 90 minutes together today asking and attempting to answer the same 5-6 questions — over and over and over again. Oh, Lord, give me patience!”

He and I were getting ready to leave town the next morning, our annual anniversary getaway to parts north. We both needed it — time and space to savor an ocean view, good food prepared by someone else, and quiet time together — no expectations, no obligations, no schedule. And it was good. Very, very good.

They called me from the dementia unit as we were driving home yesterday. “She has a UTI and a low-grade fever. Is it all right with you if we put her on antibiotics?” 

Yes, it was all right with me. UTIs make dementia much worse and increase confusion and disorientation. She doesn’t need any escalation of those symptoms and neither do I. But this time around, the infection plus the added medication led to extreme exhaustion — one more sign of decline, diminishment. 

And yet, as painful as it is to watch that happen, this time I will admit that my primary response is relief and gratitude. She is heading in one direction only; and today’s exhaustion underlined that truth for me. My mother is very old. She is very frail. She is extraordinarily confused.

She is also beautiful, grateful, loves people (even when she hasn’t a clue who they are), sings the old songs and hymns with a higher degree of accuracy than her illness might lead you to expect, and generally enjoys her life. It is not up to me when that life will end on this side of the mysterious veil that separates us from the eternal.

There are, however, some decisions that are up to me. When and how to treat illness, for one. I think I know what I will and will not allow — mom and I discussed it all, long before dementia took over — but until illness or accident happens, I suppose it’s all pretty hypothetical.

So, in addition to those prayers for patience, I also pray for wisdom, grace, kindness and insight as my mother moves ever closer to the end of her long and remarkable life. I will miss her presence in my life more than I can adequately put into words, more than language will allow.

 

Then again, I have been missing her for a very long time.

“Oh for grace to trust him more!”

A Legacy — SheLoves, November 2016

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She fell down yesterday. No one saw it happen, but when she winced while they were getting her dressed, they spotted the fresh bruising, all down her flank. What happened? everyone wondered.

Who knows?

I was in telephone contact with the nurse and the staff and in text contact with my son the MD. Yes, she can bear weight. No, she was never unconscious. No, the doctor has not returned our FAX.

And so we waited it out. And I had to make some hard choices during that long night. If she broke something, would I authorize surgical treatment? No, I decided. I would not. At age 95, with only fitful eyesight, hearing and balance, and no working memory, surgery would wreak havoc with her diminishing brain cells and would not improve either the length or the quality of her life.

So I decided. And I wept.

And then today, when I went to see her, to assure myself that nothing had been broken, I carefully hugged and kissed her and said, “Oh, Mama, I am so sorry you fell down!”

“I did?” she asked, with an extremely puzzled look on her lovely face. “I have no memory of that happening.”

She was right. She has no memory. Of anything.

BUT I DO.

I remember — and still see —

I’m up earlier than usual over at SheLoves this month. Come over and read more of the memories I try to carry for my mother, why she is the one I consider my ‘legacy’ champion.

This Broken Life

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It began with a glorious sunrise, pinks and purples spreading across the landscape, a low layer of fog sitting right over the city below us. We moved to this home, this new-to-us-home, because as we gazed out at the future, we began to see . . . brokenness, the brokenness that comes to each of us as we age, as we wend our way through space and time. The great gift that landed in our laps when we chose to step into rather than avoid that inevitable kind of broken is this: this view of mountain and sea, of city and sidewalk, of sky, sky, sky.

A few hours later, the glory of early morning gave way to a sweet, crisp clarity at midday. I slipped behind the steering wheel and drove down the hill to my mama’s ‘home,’ that room-with-a-bath in the dementia unit, the only home she has had for the past four years. “I’ll take her down to the beach today,” I said aloud, to the closed chamber of my Honda CR-V, maybe saying it to God, as well. “She’ll love that.” 

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Mama and I have been living in the middle of a whole lot of broken for a long time now, the kind of broken that cannot be mended, this side of heaven. Our twice-weekly lunches out make her smile and because she cannot remember anything further back than the last two minutes, each trip is brand new to her, and therefore, quite wonderful. 

The conversational themes for this particular outing are a trio of repeated questions: “How did you come to find me and take me out today?” “How long has this place been here?” “Do you live near here somewhere?”

I pray for patience as I answer each query, over and over and over again. “I found you because I know you, because you are my mother and I love you.” “This town has been built over the last 250 years of so, Mama.” “Yes, Mom, I do live near here. Just a little ways up that hill.”

She is surprised, as she always is, that I am her daughter, that I have always known her. On this day, she does not turn to me with that anguished look and ask, “What is wrong with me, that I don’t know that??” This day, I don’t have to carefully tell her that her memory is broken and cannot be fixed. This day, I don’t have to see the sweet relief flash quickly over her face when she takes in the truth that something really is broken, broken beyond repair.

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There is a table available, right on the concrete that abuts the sand at Leadbetter Beach; I carefully steer her walker towards it, pulling out the plastic chair, being careful to seat her exactly right and then pushing her safely beneath the table. She spreads her hands out in front of her, crying out: “Oh, lovely, lovely! The sun is so warm! I am so happy to be here. Thank you so much for bringing me!”

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And just like that, the broken fades away for a moment and I can drink in her delight. Ann Voskamp, in her beautiful new book, “The Broken Way: a daring path into the abundant life,” talks about, “losing the day in love,” and finding a way to “break brokenness” by letting it fully come. 

Slowly, slowly, I am learning to let the brokenness of aging come. I see it in my mother, I see it in my husband, I see it in myself. And I am asking the kinds of questions that Ann asks: 

“Why are we afraid of broken things? . . . Why are we afraid of suffering? What if the abundance of communion is only found there in the brokenness of suffering — because suffering is where God lives? . . .What if I made a habit of every day pressing my wounds into the wounds of Christ — could my brokenness be made into a healing abundance for the brokenness of the world?” – pg. 34

I do not want to be afraid of aging, I do not want to be afraid of dying, I do not want to be afraid of the brokenness that is part and parcel of who we are as human creatures. I want to learn more about embracing the broken bits, about discerning the differences that Ann references between ‘good’ broken and ‘bad’ broken; I want to live into my identity as the Beloved for as long as I breathe. And then I want to celebrate the goodness of God in that place where every bit of our brokenness will be redeemed, transformed, burnished to a high gleam and offered as a gift of gratitude to our Triune God, Creator, Redeemer, Sustainer — Father, Son, Spirit.

Mom and I enjoyed our lunch, even though, as soon as she withdrew her hands from the warm sunlight in the center of the table, she became vividly aware that the breeze was cool. At least three times she asked me if the visor I was wearing was helping me to stay warm by blocking that breeze. Three times, I tried to explain that a sun visor only works against the sun, not the wind. Finally, I took the visor off of my head and put it onto her lovely one. And she relaxed, convinced that now she would be warm enough.

On the way back to her unit, she began to sing, “What A Friend We Have in Jesus.” Most of the time, I join with her as she sings in the car. But this time, I listened. And I thanked God that broken as she is, my mother knows who she is. She no longer knows her own name, nor any of the details of her story. But she knows who she is — she is a friend of Jesus.

And there is nothing broken about that. Not one thing.

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I received an Advanced copy of Ann Voskamp’s book in exchange for writing about it and featuring it on social media. It is my joy and privilege to invite you to read this book for yourself, to take your time with it, to read with a pen in hand and with fingers ready to turn down a page here and there. This one is a keeper.

Zip-A-Dee-Doo-Dah

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The song of the week, that’s what it is. Each week, when I take my Mama out to lunch, she sings a song of one kind or another. About a month ago, it was, “I Don’t Know Why I Love You Like I Do.” Two weeks before that it was, ” Life Is Like a Mountain Railway.” I never know what tune will show up and it is always intriguing to see how often she sings it during our 90 minutes together twice each week.  

Do you remember it? I didn’t, until she started to sing it. And she got all of these words, too:

 

Zip-A-Dee-Doo-Dah
Zip-A-Dee-A

My oh my, what a wonderful day
Plenty of sunshine heading my way
Zip-A-Dee-Doo-Dah
Zip-A-Dee-A

Mister bluebird on my shoulder
It’s the truth
It’s actual
Everything is satisfactual

Zip-A-Dee-Doo-Dah
Zip-A-Dee-A
Wonderful feeling
Wonderful day

— by Allie Wrubel and Ray Gilbert, for Disney’s 1946 film, “Song of the South”

I’m telling you, friends, you haven’t lived until you’ve heard a lovely, frail 95-year-old, dementia-stricken woman singing that song with all her heart, especially that line about the bluebird. Something about the word ‘satisfactual‘ spilling out of her just undoes me.

Because so much of her life is anything but satisfactual, isn’t it? At least, as we are trained by our culture and our own life experience to understand what a satisfying life looks like.

I miss so much about the mom-that-used-to-be — I miss sharing good books and conversation, I miss making fudge when we’re feeling in need of a pick-me-up, I miss watching her ride the southern California waves on a boogie board, I miss her sharp insights into people and situations. Yeah, all those things are no more. That is true.

But. BUT. As hard as it is to walk this road, as tired as I frequently get by the constant repetition and confusion (as this post loudly attests), beauty remains.

Snippets of today’s conversation:

“Oh, I am so glad you called on me and are taking me out for a drive!”
“Isn’t this a beautiful city?”
“I just love to go driving!”
“Do you think I might bring my parents here someday? (
Meaning her caregivers, I have finally figured out!)
“You are such a wonderful person, so kind to me and so beautiful, too.”
“Thank you, thank you so much for this beautiful day!”

And in and around it all was that gloriously silly song.

Kinda made my day.

Battle Fatigue

IMG_0459You know, it’s just lunch. Simple, right? I get in the car, I drive over to Mom’s care facility, I punch in the magic code to open the door, I gather her up, confused and beautiful as she is, I open the door so we can both go out into the sunshine.

She says, “Do you really want to bring this old thing?” pointing to her walker.

Every time, she asks me this question.

EVERY TIME.

“Yes, Mom. You can’t really walk well without it and it fits right into the back of my car.”

I settle her into the front seat, lock the seat belt around her, nudge her gently to move her feet completely inside the car. I load the walker in the back and come around to the driver’s door, belt myself in and begin to drive out of the residence area.

“What a good driver you are. What a nice car this is — so smooth!”

“Thank  you, Mom.”

I hear these two sentences EVERY SINGLE TIME WE GO OUT, which is every 3 to 4 days. But 3 to 4 days is an eternity to someone whose brain is full of holes. 3 to 4 minutes is an eternity. Somedays, 3 to 4 seconds.

“Now tell me your name again and why you came over to get me today?”

And we’re off. The litany begins.

Again.

And again.

“Do you have children?”
“Do you live nearby?”
“What do you do?”

“Where are we going?”
“Why are you being kind to me?”
“Now tell me your name, please.”
“Do you know my family?”

Round and round we go, the same set of questions, the same set of answers.

Today we went to a place we have not visited often. She is, however, convinced that she has been here, “many years ago.” Often, this is at least partially true. Not today. We’ve been here exactly twice in the last 3 3/4 years.

The sun is warm, but the restaurant, located directly on the sands of Ledbetter Beach, acts as a wind tunnel for the ocean breeze. She is immediately shivering, despite being fully covered with two layers of clothing.

So I return to the car, get my wool shawl and my wide-brimmed black hat with the droop-down brim and wrap her up as much as I can. She continues to hold down the brim of the hat or to place her hand over her ear during the entire meal, despite the fact that she is no longer in direct contact with any kind of air movement whatsoever. Once cold, always cold, I guess.

I order her a diet Coke and get a glass of water for myself. We sip quietly as we wait for our lunches to be delivered — a kid’s sized grilled cheese with fries for her, a salad with grilled salmon for me. 

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“Here, don’t you want some of this?” she asks.

And she asks.

And she asks.

AND SHE ASKS.

“No, Mom, ” I tell her each time. “That is your drink. See, I have one of my own. I don’t need yours.”

When lunch arrives, she relishes each bite. But begins immediately with the same, recurring question/statement: “Oh  my, this is delicious! I am so happy, so happy, so happy! Here, take some of this. It is really good.”

She seems to be unable to see that I am already eating from a very full plate. I tell her exactly that, every single time she invites me to eat her lunch. “No, thank you, Mom. I have my own lunch. I don’t need to eat yours. Please enjoy your meal and stop worrying about me — I am doing just fine.”

“Well,” she says timidly, “I surely do not want to ever seem to be selfish.”

“You are not being selfish, Mom. You’re enjoying your lunch, which is yours, all  yours. Please enjoy it!”

After I finish my salad — which I always do, LONG before she is halfway through her own plate — I begin to take a French fry or two from her plate. And she is ecstatic!

“Oh, here! Have some more!”

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I cannot even begin to put into words how deeply enervating I find these outings. I love that she loves to go. I love that she finds happiness in simple things. I love her. But being with her is the most exhausting thing I do these days.  

And there is no end in sight.

I heard a bit of a cough today and, God help me, I found myself wondering if this might possibly progress into something serious, something that might help her transition to that place where she will once again be able to think and remember. 

That is not likely. She is 95 years old, can’t see, can’t hear, can’t remember, can walk short distances only. But otherwise, her health is excellent. Her mother lived to be 101. Her mother’s sister to 102. So chances are, she’ll be with us physically long past the time when what remains of her mind has completely left the building.

I give thanks daily for her life. I see the beauty shining out of her face, the unceasingly cheerful spirit that is indomitable and gracious. I enjoy her occasional attempts at humor and the increasingly rare flashes of that mom-that-used-to-be insight and self-deprecating trash talk. (Today for example: “I imagine those children I hear are looking over here and wondering what strange sort of woman is sitting there under that hat!”)

But I am tired. I am tired of continually telling myself to keep my ever-present impatience at bay, to respond with kindness to the 20th version of the same comment/question, to smile, to hug, to touch, to encourage. I do it, yes, I do it. But sometimes it feels forced, even phony, and I don’t like that part. No, I don’t like it at all.

So I am weary at times. Today is one of those times. I returned her to her room a bit earlier than usual, settled her into that recliner chair in the corner, the one by the window that looks out onto the patio with bright red geraniums. I kiss her and tell her I love her and that I’ll see her next week. I find someone on the care team to tell them she is back in her room.

And I exit the building as fast as these aging legs of mine will carry me, willing myself not to cry out, “How long, O Lord!! How long?”


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When There Are No Easy Answers

Dementia is a strange process. My mother has been diagnosed with Alzheimer’s disease, but who knows exactly what kind of dementia she suffers with? On the way home from our quite wonderful worship service today, I said to my husband that I needed to be with my mom today — wonderful family events have filled our days during this graduation season and my time with her has not been quite as frequent as usual. And the sermon was on the centrality of the cross to our faith, with an emphasis on the power of self-denial (not self-abnegation or self-abuse). We were reminded, with great care and attention, that the centrality of our call to follow in the footsteps of Jesus from day to day is to, ‘pick up our cross.’

As self-serving as this may sound, I know what my cross looks like these days.

A quiet afternoon at home today would have been nice after our hectic week. A nap would have been nice. It is possible I was not in the best shape to spend three hours caring for my mother this afternoon. In truth, it is more than possible. 

As usual, I called her unit and told them I would be there at a certain time, could she please be ready? When I arrived, she knew someone was coming to get her, she knew that I was important, but she didn’t quite understand who I was or why I should come to take her out.

I do this, on average, every 3-4 days. Not daily, not yet . . . maybe never. But often and regularly. Each time, it is brand new to her.

These are the regular questions during the first five to ten minutes we are together . . . every single time:

“Where are we going?”
“Should I bring this (pointing to her walker)?”
“What a nice car! It rides so smoothly! Sure is a good thing I’m not driving — look at all those cars!”
“Now, who are you again?”
You’re my daughter?” 
“Oh, my goodness! How smart of me!”

We drove around and around the parking garage at the mall, searching for a place to put the car that wasn’t too far away from an elevator. She kept asking questions the entire time, a litany that went around and around the same territory.

Finally, a spot opened! In we went, out came the walker, out came my mama. Slowly we made our way across the row of cars to the large, very slow elevator, taking it up to the ground level and walking across the breezeway to California Pizza Kitchen.

After safely ensconcing both of us in the booth, I began to peruse the menu, trying to decide what to get for the two of us. We usually go out for lunch during the week and the CPK menu changes on the weekends. While I searched, my mother kept talking. Some of it was routine, some of it was convoluted, some of it made no sense. 

“Mom,” I said carefully and clearly. “Please do not worry so much. Let’s just stop and look around this lovely place and be glad we are here together, okay?”

She took a breath, I went back to the menu. Then she started in again. At a loss for what to do next, I picked up my cellphone, holding it in front of my face and I started taking pictures of her lovely, expressive face, wondering how to deflect this almost frantic routine. 

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“I don’t have any money. I can’t find it. I’m feeling a little confused, I guess.”

“What are you confused about, Mom?”

“Well, I think I need to find something to do, something that’s helpful.”

“What are you thinking about doing?”

“Well, I was thinking about where I go to get this done (pointing to her hair), and wondering what I might be able to do to help her up there.” (The beauty parlor is across the driveway and upstairs from where she spends her days.)

“Well, Mom, you’ve worked hard all your life. Maybe it’s time to just enjoy your life.”

“How do you know about my life?”

“Well, because I’ve known you my whole life.”

“Are you related to me?”

“Yes, Mom. We are family.”

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I then went back to reading the menu, looking somewhat frantically for the waitress to ask a question and then, hopefully, to order for us both.

She continued to talk.

“So, in some way we are related. So would it be all right if I asked you about that and we kept talking about it?”

I did not immediately reply.

“I take it from your silence that you’re not interested in a relationship with me?”

I looked up suddenly, momentarily a little confused myself! “Yes, Mom, I’m very interested in a relationship with you! That’s why I come and see you every few days, that’s why we go out to lunch together.”

“You come to see me every few days? Me? Are you sure it’s me you see?”

“Yes, Mom, I’m sure it’s you.”

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“Well, why can’t I remember that?”

“Because remembering is hard for you now, Mom.”

“I better get to the doctor!”

“We’ve been to the doctor, Mom. We’ve been to lots of doctors. I’ve taken you to doctors for the last eight years or so.”

You have? Why would you do that?”

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“Because I love you and because you wanted to find out what was wrong with your memory.”

Then, out of the blue, “I really need to go the bathroom.” So I got up, helped her to get up and we headed down the ramp just behind our table. Just then, the waitress arrived (thank goodness!) so I asked a question, got the answer I needed and quickly ordered.

Mission accomplished, we were back in our places in ten minutes.

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The questions began once again, heading in slightly different directions:

“I’m a Christian – are you a Christian?” (This particular topic was brand-new this week.)

“Yes, Mom, I am a Christian.”

“Well, that’s good. You know I used to be quite a spiritual person. And I think I need to be spending more of my time praying.”

“Well, praying is one of the best things you can do with your time these days, Mom.”

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“You called me, “Mom.” Why did you call me that?”

“Because  you are my mom, and I am your daughter.”

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“I’m your mom? Did I give birth to you? Did I take good care of you?”

“Yes, Mom. You have birth to me and you took very good care of me.”

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You’re really my daughter? Why, that’s wonderful news!!”

 

Yes, Mom. I am really, truly, forever your daughter. No matter how many times in thirty minutes I have to tell you that truth.

I am your girl.

You are my mama.

And I am exhausted.

 

When I brought her back to her room, I remembered to check her closet for the personal supplies that I provide for her care. She was out of everything. So a trip to CVS was in order, requiring a careful shuffling through my collection of coupons and discounts. I loaded my car, returned to the facility and a volunteer, seeing me fully loaded, pushed in the code required to open the door to her unit. 

As soon as that door opened, I saw my mama rushing (and I do mean rushing, moving faster than she ever does when we are together) toward the door, shouting, with a frown on her face: “Leave that door open! I’m going out!”

Ah, no, Mom. You are not going out. As much as you might like to go out, it is not to be. 

There were no jokes today. No threads of hymns, no singing. Confusion reigned completely this time. 

On my return visit, she did not see me. She did not know me at all. I was simply the one who opened the door and she wanted OUT.

I find myself praying that the way out will come near, near, near.

And in the middle of that prayer, heading my little Honda home, with tears building behind my eyes, I remembered the rest of this morning’s sermon: “Get thee behind me, Satan,” Jesus said to Peter. “Get thee behind me.” 

‘Behind me.’

Oh, Lord. Help me to place myself behind you. Not leap ahead into the future, not try to force anything by the (oh-so-limited!) power of my will. Not second-guess, not over-worry, not even ask ‘why?’ 

My mother is who she is. She is where she is. And despite all evidence to the contrary, I will choose to believe that she, too, is safely behind Jesus, following in the only way she can — blindly, gropingly, feebly . . . but . . . oh, so faithfully. 

Help me, Lord, to honor who she is right now, incessant questions, confusion, frailty — all of it — who she is right now. Help me, Lord.

 

Looking at the Whole Truth

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“Oh, Diana,” friends tell me, looking into my eyes with tenderness and concern. “You are so lucky to have your mom still with you!”

I offer a small smile, nod my head and reply, “Yes, I know that I am.”

And I do know that. I do. But there is also this other truth, ever-present and insistent. The hard, hard truth that the lovely old woman inhabiting my mother’s body is not at all the mother I have known for most of my life. She is beautiful to see, kind to everyone around her, breaks into old hymns multiple times an hour, and loves to visit the outside world.

But she is not my mother. At least, not in the ways that I wish she could be.

That woman, that mama, has been slip-sliding away for nearly a decade now, steadily losing pieces of herself. And as she drifts further and further from me, I feel as though there are large chunks of me fading into the ether right along with her. Huge chunks of my own history are gone forever, never to be found again. 

I miss my mother. I miss being known by her. I miss sharing history with her, I miss swapping stories, wrestling with hard truths, reading books, going to the movies, taking trips, making fudge, having her give me driving directions, watching her interact with my children and grandchildren, marveling at her insight into people and situations, laughing at her ribald jokes. 

She is here with me in physical form, and for that I give thanks. But she is not here in any of the ways that make her my mother. She is a beautiful, loving, sometimes forlorn, and very old woman. On July 6th, she will be 95, a fact that startles her every time I tell her. Last week, she turned to me and asked, “I wonder who I am?” 

I wonder who I am! 

Ah, Mom. I wonder, too.

 

As I stood under the shower’s spray this morning, I offered small prayers of thanksgiving:

     “Thank you, Lord, for hot water and plenty of it.”
     “Thank you, Lord, for my good husband and his careful attention to our finances.”
     “And thank you, Lord, for my sweet mama . . .”

And with those words, I found myself sobbing. Not gentle tears these, but hard-wrought, heart-felt, gut-wrenching sobs. “Where is this coming from?” I wondered. Most of the time, the tears are far away these days, leading me to believe that I have come to some place of peace and acceptance about the way things are. But today’s meltdown reminds me that below the surface, my own emotions about mom’s situation are deeply unsettled.

My only brother arrives today and I will be glad to see him and his wife. But we four aging children must have a difficult conversation this afternoon. We have a scheduled meeting with the finance guy at Mom’s care facility, that place where she is safe, well-cared for, loved. The cost of her care is climbing while her small investment account is diminishing, so we’re looking for answers today. How can we best manage her care? Will she be alright?

The better, and I hope bigger, part of me is not worried about this, trusting that there will be enough, that God will provide a way for this daughter, this faithful Jesus-follower, this disciple. But I found myself crying out to the God we both love this morning, asking how long? and, are you there? and, why? 

No answers appeared in the shampoo bubbles. Not one. Nothing but the strong sense that the invitation continues to be this one: trust meTrust that I see your mama, that I love her, that she is safe. Trust that your own love and care for her are enough, that you are doing the best you can, that she has not been abandoned. Trust that there will be enough.

Enough.

And so I will choose to do so. We four will be as careful, mindful and loving as we possibly can. And God will carry us through. 

In the meantime, I will call to mind that image I was given over four years ago now* — that image of my small mama, held safe within the immense sacred heart of Jesus Christ, the One who was present before the universe was breathed into existence, the One who sees each of us with eyes of love and concern, the One who is the only place of true safety any of us will ever experience.

I am trusting that that image will carry me through whatever lies ahead.

 

*I wrote a lengthy post with lots of photos about how that image was given to me here.

 

And Then . . . There Is Light

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And it looks like music and laughter.

My mama’s neurologist has slowly been re-introducing her to Aricept since the new year. Initially, her caregivers and I were not at all sure about this. She was easily frightened, tearful and terribly, terribly confused for several weeks. At the same time, we also began to notice slight cognitive improvements here and there. So we hung in there, letting her hole-y brain slowly catch on to the new med.

I am so glad we did.

About two weeks ago, we began to see noticeable signs of improvement and my mom became a much happier and more restful person to be with, generally happy to be alive, delighted to see the sunshine, enjoying the taste of good food.

And she started to sing again. Praises be.
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When I arrived to pick her up for lunch today, she was seated in her chair in the corner, with sunlight streaming through the window behind her. On her lap was one of her small menagerie of stuffed animals, this one a teddy bear, and she was speak-singing something to him.

“Hi, Mom! How are you today? Watcha doing?” I sang to her from the doorway.

“Oh, I’m just telling my friend here about the cross, that old rugged cross.”

“Great idea,” said I, “no better thing to talk about.”

And she began to sing in her quavery alto a few lines from that old hymn.

As we drove south through the hazy sunlight, she sang it off and on, until I found one on YouTube and played it for her to sing along with on my iPhone. I sang in my own quavery alto (!!), and she was delighted.

The lines of that old hymn kept reoccurring to her throughout our lunch on the wharf, showing up whenever the space between us was not filled with conversation. It has always pleased and astonished me that so many old song lyrics are still in there, somehow conserved through all the jumbled mess of her synapses. I am so pleased to hear them again. So pleased.

Always when we meet, it is happening-for-the-first-time-all-over-again. Always, she is delighted to take an adventure outside. Always, she loves driving in the car. 

Always.

There is seldom any memory of our many previous visits to the same place, especially as we are on our way. “We come out here every few days, Mom,” I tell her with a smile. 

“Are you sure it was me you took?” she asks sincerely.

“Yeah, I’m sure,” I tell her. 

“Oh, well,” she says, “My brain is kinda weird, isn’t it?”

“Yup, Mama, it is. It is.”

Today there was a large cruise ship in port. This always means many, MANY more people in the waterfront area, and more people in all the local restaurants. The wait staff at our favorite place to sit and savor the view was hard-pressed to keep up with today’s onslaught. And while we were looking out the window, talking about how many children I have and how old they are (at least five times in the space of fifteen minutes), this sweet and funny thing happened:

The words to that old hymn came out of my mama’s mouth, though this time they were spoken rather than sung. That, in itself, is a small miracle, as the tune is usually required to spark that space in her diminishing memory bank. 

“So I’ll cling to that old rugged cross,” she said.

Pause.

“And exchange it some day for a crown.”

Pause.

“And sometime in between there, it would be really good if I could have a little something to eat!”

I tell you, I guffawed. And so did she. What a delightful moment that was. A brilliant flash of the mom I have known most of my life — quick witted, deadpan delivery, followed by riotous laughter.

That was much more satisfying to me than any single piece of the meal we enjoyed together today.

With the possible exception of a phenomenal scoop of vanilla ice cream which we shared, courtesy of the kitchen, in apology for the extended wait time today.

Now that, my friends, is a very good day. Very good, indeed.