Right now she's pretty far gone, farther than the woman who now cares for her can believe. We've watched and grieved this deterioration for 7 years now, 3 of them without dad protecting us/her from the reality of her dementia. His death shocked us on all kinds of levels, but the most profound was discovering the depths of mom's illness.
I've been her protector/caretaker/best friend since I was three years old - not the healthiest mother/daughter connection, perhaps, but I've benefited enormously from growing up too fast and being too responsible, so I'm beyond the whining self-pitying stage with all of that. I moved to Texas 3 years ago to help with parental caretaking, a mere 5 months before dad's sudden and (how can it be?) unexpected death. (While the police were investigating this unattended death, my sisters and I had a moment of wild laughter - "He's 86 years old, how could we have been so totally unprepared for death? LaLa Land!!!" I get it now - they were always there, how can you imagine a world in which they aren't?)
We had a houseful of relatives for the memorial service. There are so many details, so much to attend to that we just moved around mom, and moved her around, without really seeing that she was no longer mom at all. That started to sink in when we found the pile of leftover Service Bulletins (Does anyone remember bringing these home?), each with a picture of dad, each picture carefully cut from a photo she'd found somewhere. When we talked to her about it, the initial shock was learning that he was The Man - not dad, not his name, not her husband, but The Man. What had happened to The Man, he didn't come home anymore. A few weeks later she was angry when we told her it was our dad, her husband. A few months later she didn't remember ever being married.
She chants now - there are no words left for her most of the time, just random syllables. She drums and chants, endlessly. Does it occupy that active brain? Is it a vague memory of music, of teaching piano classes with bongo drums to inculcate rhythm? Is it primal? All cultures have a tradition of drumming and chanting, has she gone to that part of her brain, the place where ancient memories must lie? We think she recognizes us sometimes. It's so lonely to see your mom and know she doesn't know who you are, it's better to see/hope for a light in her eyes that tells us she really does know us, somewhere in there she knows we're her daughters, we love her, she loves us.
I had a story about my mom for decades, the story of a lovely woman trapped in a marriage with an angry man, scraping by on a preacher's salary, raising 7 children, working herself to exhaustion. I was 8 1/2 when the twins were born. 7 kids in 8 1/2 years. Scores of diapers to wash every day, and hang on the line winter and summer. Meals to prepare, clothes to make, hand-me-downs to alter, cleaning, bathing 7 kids on Saturday night, rolling up 4 blonde heads in socks so we'd look lovely lined up in the pew Sunday morning. (I was usually in charge because she was the choir director/organist for most of dad's parishes.) 6 or 7 down with measles and chicken pox and all those others illnesses children are prone to. I escaped some of those bouts, or got sick later. I had to be there to help, I had to make sure she was okay.
I knew some of her history - it was fascinating to all of us. Her side of the family was highly educated, highly successful. Her father was Editor and then Editor/Publisher of a highly regarded newspaper in a small town that boasted two top-tier private colleges. Her grandfather was a founder of one of the schools, everyone for generations had attended, all were musical and sang in the choir. Grandpa had 3 wives. (We found out about the 4th after we were adults, a divorcee who was thrown from the house when grandpa learned she had a lover in the City.) His first wife was a music professor at the college, mother of his first 3 children. We never found out how she died. The second wife was her best friend, also a music professor and vocal coach who traveled all over Europe with the top singers of the day, who was not fitted for being a wife or a mother, and who died of peritonitis when mom was 12, her sister 14. His last wife was the Grandma we knew, sister of the second wife and - surprise - a professor of music at the college and creator of a highly respected and popular summer music camp.
I knew from our visits that they lived an elegant, financially secure life, that mom had grown up in comfort, even through the Great Depression, that she was a part of an important family. I knew that the way she was living now was anathema to her. I blamed my father. I was wrong. It wasn't a good marriage, but they were both at fault. Mom left 3 times, and I always wondered why she came back. I was terrified when she was gone, but I thought she was foolish to return to a life she disliked, too many kids, too many responsibilities, not enough friends, not enough freedom.
Until the last year of our caregiving for mom, I had no clear picture of what her inner life was like, what sense she made of her world. Most of what I know now is pieced together from odd and fragmentary conversations with her, the 50 scrapbooks she assembled in the early phases of her dementia, her notes in the organ music I use every Sunday, and some honesty from her best friend from childhood.
She joined me outside during a smoke break one evening last summer, and started talking about 216 Nevada, the home she grew up in. It was surreal, sudden shifts from "It was such a beautiful house, we had so much fun there" to "B*** was always angry, she never came out of her room". "It was always filled with people" "I was so lonely" "We had such fun together" "Kirk hated it" "I never knew what to do." "I never knew what I was supposed to do." "I couldn't do anything right, I never knew what to do." "It was so beautiful, I loved it there." "I was always alone, no one wanted to be with me."
It was clear that both stories were true for her. There was the public story, of elegance and importance and closeness, and the private story of 5 children who'd lost their mothers and never saw their father outside of public functions or his office at the News. I found out from her friend that she was, indeed, always lonely, neglected. I learned from Kay that mom's mother hated being married and didn't have time to be a mother. She was a musician who somehow ended up in a life that fit her badly, she was always irritable when home, and delightful at the college.
After that conversation I started hearing her differently - I understood that when she called herself stupid because she couldn't remember where the dishes fit in the cupboards, it was a deep anger she felt, a lifetime of anger with herself for not being better, smarter, more successful. I understood that dad became The Man when he was finally able to care for her, to nurture her, to be treated lovingly by her when her litany of resentments faded from her memory - she remembered the tension and anger in that relationship, so this sweet man was someone new, someone patient and loving, someone who wasn't battering to get through the wall of his iniquities she'd erected around herself.
When we moved mom into a bedroom closer to the heart of the household, we moved her scrapbooks, hoping, I suppose, that looking through them might ignite memories. I tried for a few weeks to pull one out and talk to her about them, and was astonished at what I found. She saved everything. My childhood is found in 3 large volumes, with locks of hair in envelopes, all my report cards, the hospital bill from my birth, and a later one for a tonsillectomy. Every card and telegram that arrived when I was born, postcards sent by my uncle when I had measles, a very funny biography I wrote for school when I was 10, certificates from piano teachers, every card I made or sent her for her birthday or Mother's Day, a small booklet of things I said as a very young child that struck her as funny or profound.
There's a volume from her days as a WAVE, photos of her friends, a commendation from her commander, all the paperwork from enlisting, and being discharged, wedding photos of friends from the Navy, letters she sent home, many newspaper cuttings about the progress of the war, and the process of ending those wars. Obits of friends she'd stayed in touch with over the years - how could I have believed she was so isolated? She was the Preacher's wife, so close friendships in the community were rare, but she was still having reunions with friends from college 50 years after graduation. Her best friend has been her best friend for 83 years.
There are 4 volumes from college, 2 of them documenting choir trips. Each of her children has at least 2 volumes, her grandchildren all have at least one. There's a heartbreaking book dedicated to JFK's assassination, and another to 9/11. There's a volume that commemorates her activities as an anti-war activist during the Vietnam War, and another with dad's published editorials and letters.
There's only one small book from her childhood, and it ends in blank pages, nothing added after her mother's death. Her siblings show up in our books, they don't have their own, and that makes me sad, knowing that connection and history are so important to her, but somehow they're the people she's least connected to. Her father's book is all about the newspaper, his Grand Marshall stint at the State Fair, letters from the Roosevelt White House about his work as Press Liason to the editors of the midwest, lots of clippings of his weekly column. A couple of pictures of him with important people, not one with the family.
The ones I cried over were clearly the last she worked on, random photos from all phases of her life, many just stuck loosely between pages, and the empty ones, the ones she planned and couldn't finish.
For the 2+ years we were the primary caregivers we dedicated our lives to making her safe, comfortable, and secure in a familiar environment. One sister was the primary wage earner, two of us worked part time and in ways that allowed at least one of us to be with her at all times. Our brothers stepped in during the summer to give us a break, but we couldn't leave the house for long. What if..... Her heart was dicey, she has cardiac episodes where the heart slows and her blood pressure drops. What if she died when I was gone?
She came to church with me when I practiced, and spent her time setting all the Missals straight - classic mom behavior, up and down the rows, making sure they all faced the same way and were neatly stowed.
We took turns taking her to Church on Sunday, the two church musicians, which we could do because mom was so lovable she attracted people who would keep her occupied during the services. Her only outing, and our only free time, was Wednesday mornings, a Seniors group supported by yet another local church. That gave us 4 hours to grocery shop and run errands without tiring her. Or sometimes to just nap, or read, or sew.
My home AA group, a women's meeting, embraced her, so I didn't have to skip meetings. It was a sad day for all of us when that ended - she got too frustrated about not understanding what people were saying.
There was a huge amount of frustration building up in her, and eventually we realized that this particular mom couldn't bear being so helpless and useless. She was the mom, we were her responsibility, it hurt her that her daughters cooked and cleaned and did the laundry, and it stopped being possible to joke her out of her anger by telling her that 55 years of housework meant she won the big prize - everyone takes care of YOU now! She wandered the kitchen, muttering about her stupidity, her uselessness, "I don't know what to DO" was her mantra. We'd been able to trust her to stay away from the stove, but that ended. She grabbed the dishcloth from my hands and yelled "This is MINE!" many times, and slammed the door in my face when I tried to tell her I loved cooking and cleaning because she taught me to do both well.
We decided we needed to get her into a safer environment after losing her twice, having her burn herself on a cake pan fresh from the oven, realizing that even a quick pee break was long enough for her to find something dangerous to do. And we were frazzled, and terrified, and lacked the skills to manage someone this far gone.
My story about my mom is so different now. I no longer envy her the luxury and privilege of her childhood, because those things didn't give her any sense of family, of belongingness, of security in a large and overwhelming world. I don't pity her for a marriage I always saw as miserable - I'll never understand what brought them together or kept them together, but I'm grateful for life, for my siblings, for having had family, with many wonderful memories intermixed with the ugly times.
I'm grateful for a brilliant father who taught me to love words, to ask questions, to fight for justice, to revere history and the wisdom of those who came before.
I'm grateful for an enormously talented and funny mother, who raised us with Bach and Bill Cosby, Perry Como and the Beatles. I'm sad for the woman who played the organ brilliantly, directed choirs with patience and skill and never knew how amazingly gifted she was. I treasure memories, the night we got tipsy on bad wine and lit every candle in the house, and the grand moment when she put one on the floor - "A lamp unto your feet", she said with a wicked grin, leaving both of us helpless on the floor, aching with laughter, yelling "Stop, I'm going to wet my pants!", which we both did.
I'm grateful for the car trips we took every other summer, to National Parks all over the country, to Washington, DC and New York City. I'm grateful for Homecoming Games every year at the college, and summers at our cabin in the Northwoods. I'm grateful for parents who read to us every night, for the fact of dozens of cartons of books to pack and unpack with every move, for Norwegian Christmases and no Santa Claus, for a religious life focused on great music and the Good News, even in the midst of daddy hating his choice to honor the family legacy instead of becoming what would no doubt have been the most beloved professor in some ivory tower somewhere.
I'm grateful for the delicious scent of homemade caramel rolls on Sunday morning, and a large mid-afternoon dinner every Sunday, with leftovers and popcorn and fudge in front of the TV Sunday evenings. I'm grateful we didn't have a TV until I was 12, but always had the best sound systems dad could piece together or build.
I'm grateful for china and crystal and the sterling flatware on our birthdays, with made-from-scratch angel food cake, our choice of menu, and the chair at the head of the table for the honoree.
I'm grateful for a collection of Barbie clothes I could probably retire on if I could give up the elaborately embroidered felt cowboy boots, the hand-stitched wedding dress with a petticoat made with fabric from one I'd outgrown. How did she find the time and energy she put into creating that amazing wardrobe out of scraps and recycled fabric?
I'm grateful for being pushed to excel in school, for being told clearly what was expected of me, for being loved and protected through endless battles with bi-polar disorder, even when no one knew what the hell was wrong with me and no one was diagnosing adolescents with the illness.
I'm grateful for the chance to learn more of the truth about my mom's life, even though the process of caring for her was painful, exhausting, and frustrating. I'm deeply grateful to the woman who is now caring for her, someone with training and skill and a home geared to caring for people who can't be left alone for a minute.
I suspect I'll learn more as time passes, as we sort and sift through her belongings some more, as we decide who keeps what and what goes, and share memories of moments that were precious to each of us.
I'm a little nervous about that parceling out process, though. I kept a really ugly covered casserole dish and a JELLO MOLD after the first clearing of the kitchen detritus. I thought I was classier than that.