Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts

Tuesday, January 9, 2024

My Analog Life

2024 has arrived. Now what?

I am still (no surprise) figuring out what my life looks like post-medical catastrophe: physically, mentally, emotionally. On the very plus side, as in "wildly positive," I am walking daily (okay, there have been some weather call-offs) with a good pace and increasingly distances (a mile to two plus). Given that my first post-catastrophe walk was .16 miles from our driveway to the end of the block and back, with me hanging onto Warren's arm, I am thrilled.

But I would be kidding myself if I think I am back to my pre-catastrophe self physically because I am not. And will never be in some areas. That's just the reality of age, long-term cancer, and the catastrophe. (And on the mental front, yes, my intellectual capacity took a hit too. Given that dementia runs heavily in my mother's side of the family and I am at significant risk for developing it, I am keeping an eye on when I have blips that are more than just forgetting a name.)

But, back to 2024 and my continuing to shape my new life. As I have shared with close friends, I am learning to create a flow that seems to work best for me now. One huge piece of my life now is that I am spending more of my time in what I will call my analog life.

Here are some things that my life contains.

A jigsaw puzzle that my friend Maike, who knows that Warren and I (especially Warren) are huge admirers of Frank Lloyd Wright) found at a thrift shop and sent our way:


Books, books, books, the old-fashioned way:



Reactivating my sourdough starter, which bit the dirt during the medical catastrophe. I know, I could have asked my next door neighbor to give me some of his starter, but, hey, starting it is no big deal:



And other pieces that were already in place and continue to give me a quiet space to work (head or hands or both): letters to friends (of course) and walking (previously mentioned), washing dishes by hand, taking time to watch the seasons and the skies and the weather and the birds. There is a farm near my father's house where the last two times I have gone to see him, there has been a huge murmuration—starlings, perhaps?—as I am heading back home driving past the farm. "Wow" does not begin to describe the sight.

Back in my earliest days home, my friend Katrina, in response to my comment that I did not have the strength and energy to talk on the phone more than 10-15 minutes, and how some (including my father) would blithely plow past that limitation, sent me a timer. Oh, Katrina! What a gift! I rarely used it on the phone calls, as I could see on my phone how long the call was lasting, but what this timer has done for me is given me controllable time back. I know, I know. Phones have timers and alarms. Our 1970s era stove has a timer clock for the oven. But setting the dial on this timer and letting it run until its distinctive ding, has made my baking and other activities (my now daily nap) so much easier to track. Who knew?

A life changer! 
The catastrophe and some other important matters impact how and whether we will do much (any) traveling this year other than getting to Mayo sometime later in the year. I hope. I am doing telehealth appointments right now; I do not have the physical capacity yet to drive to Rochester and flying, even without factoring in Covid and flu and RSV, takes even longer than driving. I told Warren this weekend that I have made peace (reluctantly) that I will never get back to Maine, a trip we hoped to take last July but scrubbed because of Symphony matters. I realize it is highly unlikely I will make it out to the PDX area this year to see my family. It is what it is.

Fellow blogger Laurie recently wrote about her "football sweet potatoes" and I asked for a photo, which she gladly provided. My interest was prompted by photos from Orlando at Thanksgiving, scrubbing sweet potatoes as big as his head, even adjusting for camera angle. (I called and asked; adult confirmed the sweet potatoes were massive.) My son Ben is making plans, still tentative, to come back here in May, with Orlando (who starts kindergarten this fall!) and I hope that all comes about, whether we are scrubbing massive sweet potatoes, baking a pie, or just hanging out in the sweetness of time (analog, of course). 


Friday, December 4, 2020

This Week

 This entry will be short.

It has been a long, hard week. My mother—our mother, counting my two brothers—died Sunday after a long, weary, draining (on her, on my father, on all of us) struggle with dementia. 

Add to that a workload, both at Court and in the volunteer arena, that has skyrocketed courtesy of the pandemic. The stories I am hearing range from matter-of-fact to heartbreaking and are only going to get worse as the pandemic and its economic fallout deepen. My two coworkers in the mediation department are also swamped, which is why I held mediation for two and a half hours the morning of my mother's afternoon graveside service. 

I am exhausted. Today in trying to schedule a mediation while on a Zoom meeting with colleagues at Court and at our high school, I stopped and said, "What day is this? What day are we looking at?" One of the participants kindly said, "It's Friday the 4th, April." Thank you.

One small note and then I will close. While working today, I heard a knock at the front door. When I went to look outside, a delivery person was holding a flower arrangement in her hands. "April Nelson?" Yes. She set the container down on the porch and left.

The arrangement was a vase of yellow roses, my mother's favorite flower. My dad had a spray of them on her casket at the service. I knew it had to come from someone who knew my mom well. I was right; it was from a lifelong friend, Mary Lou, whose daughter Cindy has been my friend my entire life.

And that is a wonderful note to end this long week on. 


Tuesday, August 13, 2019

Small Moment: "I Love You More"

Warren and I ran an early morning errand today and when we got back to Delaware, I told him to just park his car in his usual spot (a half block or so from his office) and I would walk to work (a block and a half) from there. As I started to cut across the Justice Center parking lot, I called over my shoulder, "I love you!" With a smile that could have been a wink, Warren called back, "I love you more."

Oh my. That was a hand-to-my-heart moment. "I love you more" is how my beloved Aunt Ginger and I always took leave of one another, with each of us often trying to top the other:

"I love you."

A moment with Aunt Ginger and a very young Ramona (2014)
"I love you more."

"Well, I love you more than that."

"I love you all of that and even more on top of that!"

Even in her last months, when the dementia was starting to take its toll, Ginger would remember to say "I love you more" when it came time for me to leave.

Ginger has been gone now for a little over nine months. I visit her grave occasionally, and noted to Warren when I came back last time that we need to seed her grave this fall or spring as the grass put down by the cemetery crew did not come in well (and it has been such a dry summer the last several weeks that nothing would take right now). I have some photos of her in my study, and a memento here and there.

But mostly I have my memories, over six decades of them. As I noted when she turned 80, Ginger was a key part of my life always.

And today Warren called her response to me, deliberately invoking her. That's what his smile was about. And after I blinked the tears out of my eyes. I looked to the skies and said out loud, "I love you, Aunt Ginger."

"...and I miss you."

Sunday, July 7, 2019

Dumpster Diving With The Best Of Them


"Did the butter get thrown out too?"

Dad looked pained. "Look in the freezer. It should be in there."

It wasn't.

This is not a tale of butter that mysteriously disappeared. This is instead a story of combining households and generations and lifestyles.

My brother Mark and his wife Jackie are selling their home and moving into my dad's house, the one we moved into in 1970 and in which he continues to live today, first with his shrinking family, then with my mother, and. finally, after she moved into memory care last November, by himself. Mark and Jackie recently hit a financial wall, not of their own doing, that, as they each characterized it, was the straw that broke the camel's back, the camel in this case being their ability to make their mortgage payment and pay their bills and pay for Jackie's medical insurance, as the just announced cut to her hours eliminated her employer-paid health insurance. It was the insurance that was the last straw; given Jackie's health issues, "going without insurance" is not an option. So they made the difficult but solid decision to sell their house while they are on the upside of their mortgage and move into the old home place. (Back in 2018, I interviewed Mark and Jackie about their grocery budget given the money issues and the health issues.) With Dad a month away from turning 86, still in good health but, as he puts it, old, I think we are all, starting with Dad, relieved that he will no longer be living alone.

The house is large; Mark and Jackie will take over the upstairs, all three will share the kitchen and the bathroom. As a major part of that move, both households are downsizing. Jackie, Mark, and a crew of loyal neighbors are deep-cleaning Dad's house for the first time in...ten years? Twenty? Since 1970?

Don't get me wrong. Dad and Mom did not keep a dirty house. But Mom's ability to do housework disappeared years ago due to physical limitations, and Dad's ability to keep up with everything diminished as he aged and as Mom took more and more of his time. You wouldn't walk into the house ever and notice anything much more than dusty shelves and accumulated clutter on the counters and surfaces, but as Mark and Jackie prepare the house for their move, their hard efforts are showing just how much dust and dirt and grime had accumulated over almost 50 years.

So back to the butter. One of the tasks Jackie undertook yesterday was cleaning Dad's refrigerator for the first time in...a long time. Again, nothing was filthy and there was no spoiled food, but..yeah, it was overdue. Jackie scrubbed shelves, she wiped down bottles and containers, and when she found items that were past their pull date, she pulled them.

Note: Jackie's mother, Judy, was an RN. Jackie can and does wash her hands with more attention than most of us ever even think of doing. Judy taught Jackie well about food safety, about keeping surfaces (counters, sinks, refrigerators) clean, about safe food preparation. Those early life lessons have served Jackie and her husband and children well over the years. Those lessons also include paying scrupulous attention to pull dates and "use by" dates.

Second Note: Dad was not raised by an RN. Neither was I. Dad, in fact, lived his early years without electricity, without running water, without refrigeration. You get the point. I, of course, grew up with electricity, running water, and refrigeration, but believe that food is more durable than what we give it credit for, especially non-perishable items and items kept frozen. I also believe strongly that "use by" dates are, for the most part, something foisted on us by food manufacturers (note my word choice: manufacturers—we eat manufactured food in this country! ) who want us to continually be buying their food items "fresh" (like a can has a "freshness" quality to it). So while Dad and I talked this morning about the butter, he talked about how his family prepared and kept food when he was growing up and how that butter in the freezer would keep 20 years.

So where was the butter? When I quizzed my brother when he and Jackie showed up later, he said "probably in one of those trash bags near the top of the trash container." (We were already outside, near the big trash tote.)

I didn't miss a beat. I popped open the lid, opened the bag closest to the top (the contents of which were still cool), and rummaged around. First up was a never-opened bag of pecan halves. Score! Next were the two pounds of butter, still cold. Score!


Jackie, who was out of the porch cleaning something, called over, laughing. "I can buy you butter, April! And I'm not eating at your house!" I called back, "You can't eat butter anyway, you're lactose intolerant!"

I took my finds inside to show Dad, who grinned. He was happy. Mark, knowing the vast gulf on food that separate me and Jackie, laughed.

When Jackie came back in the house, we both stood in front of the built-in cabinets in which Mom had kept baking items and spices. I looked at her: "You opened this yet?" Jackie shook her head.

We opened the doors. It was a hodgepodge of things: some boxed mixes (Mom was truly a bride of the early 1950s; convenience food was what everyone used and she never really gave up that habit), an empty plastic container, and a somewhat full canister. (I opened that one: powdered sugar.) There was an unopened box of corn starch, an old opened box of baking soda, and an opened container of petrified baking powder. There was a whole drawer of spices, some of which, as I looked closer, probably predated my parents moving into the house 49 years ago.

Oh my.

"Let me just take these all," I said, grabbing some grocery sacks. I dumped the items we knew were past redemption: the petrified baking powder, the old soda. But the rest?

"I'll sort them out when I get home."

We bagged it all. I put the butter and the pecan halves into the bags as well, hugged Dad, and left.

The snazzy Tupperware container is on the left, the Jiffy mix is on the right
When I got home to Warren, I was excited. "Guess what I found! The butter! Guess what else I found! Come look!"

Warren dutifully looked. I then spread my treasures on the table and went through what I had brought home. I kept the powdered sugar, both in the canister (a cool circa 1970 Tupperware model) and an unopened bag of the same. The regular sugar made the cut. I kept the mixes—brownies, lemon bars, pumpkin spice cookies—because I sometimes bake for other occasions where a box mix is not the end of the world. I even kept the Jiffy Corn Muffin Mix, which, until I was well into my teens, constituted the only "cornbread" I really ever ate, with the rare exception of Kentucky cornbread. (I was an adult before I realized the sweet stuff was considered "corncake" and the Kentucky stuff, unsweetened, was truly the cornbread. I still sweeten mine, but not as much as I did in younger days.)

t took me about 15 minutes to sort the spices, opening each one and smelling and tasting them. Nine of them I emptied and recycled the containers. 12 of them I kept.

The pecans? I'm about to start making pesto, and I use pecans in my pesto to thicken it. We just yesterday bought pecan halves at Aldi, where they run .529 cents an ounce, the cheapest in town. That six ounce bag I rescued? $3.17 worth of pecans at that price.

Sweet.

The butter went, of course, in the freezer. I texted Jackie a photo of it.

Fortunately, I am married to a man who gets me and shares my attitude towards food and towards food durability. He even smiled about the Jiffy mix: it's not anything we would ever buy, but what the heck, might as eat it up.

A little dumpster diving goes a long way.

The butter in its new home, our freezer

Sunday, March 24, 2019

Stuff

Stuff is on my mind.

Stuff as in physical, tangible stuff: books, clothes, papers. Even with my leaner-than-many-of-my-friends (and my husband, for that matter) lifestyle, I still have a lot of stuff. Right now, this moment, I am looking at a pile of stuff (books, papers, miscellaneous stuff) 4 feet long, 18 inches wide, and 12 inches deep sitting on my study floor. Goodwill, shred, file away, send to someone else: it is all stuff that needs to go, in part because I am tired of looking at it and in part because we will be hosting one of our guest artists next weekend and he will be staying in this room. Rather than just shift the stuff to the other spare bedroom (and then shut the door), I need to deal with this stuff now.

The irony of my listening to Anthony Ongaro, the guy behind the website "Break The Twitch," talking on YouTube about "Simple Inspiration for Minimalism and Decluttering" while I stare at this pile and type this post is not lost on me. Yeah, yeah, I know, Anthony, I know. I gotta let go of this STUFF.

There is other stuff too: intangible, emotional, sticky life stuff. My health, which continues to deteriorate slowly and creakily, is on the "other stuff" pile. Our complicated schedules (upcoming concerts, chemo appointments, conferences and conventions, to name a very few) are part of that other stuff. Helping my dad navigate his new life now that mom lives in a memory unit is some of that other stuff; at almost 86, he is more willing to let his adult children step in and assist with the paperwork, the housework, the yard work, the, well, stuff. I have children and grandchildren out in the Pacific Northwest whom I think about, worry about, miss a lot, and I find myself going over and over the calendar from now until September trying to figure out when we can get out there and not be rushed. (I almost wrote "stuff a trip out there in," but I refuse to treat that trip as stuff.) And those are just the larger items. Correspondence, dinners, coffee with friends, well, that's even more stuff.

It's a lot of stuff.

I am taking this coming week off from work. It is spring break for all of the schools in our county and given that at this time of year 99% of my workload is holding attendance mediations in schools, next week is quiet at Court and a perfect time to step away. I have a few things "scheduled" during that week (including two consecutive appointments at Court on Monday, each about 45 minutes long) but otherwise am leaving the week wide open. I am using the week to regroup mentally, to recharge physically, to write, to do what I want at a slower and easier pace. I am hoping to use some of the week to get through some of the other stuff (on the not too unrealistic hope that the tangible stuff will be done by today or tomorrow).

I need this week to unstuff myself.

Social activist Jodie Patterson, in her new and stunning memoir The Bold World, wrote "It's time, I think, to dream forward."

I agree. And that's why I need to take care of this stuff—the tangible stuff, the intangible stuff, all of the stuff—now. So I can dream forward.

Tuesday, January 1, 2019

Looking Back: The 2018 Books

My last library receipt of 2018

Way back in January, I started the year with a "challenge" (in the most casual sense of the word) to read 50 books in 2018. (Well, it wasn't my challenge exactly but the challenge my friend and yoga instructor Amanda put out in the world.)

Okay, I passed 50 books sometime in March. Yes, I am bragging. No, I am not bragging because I knew going into the year that I read a lot. 50 did not surprise me in the least.

So where did I finish the year? At a respectable number, but not as far as I had hoped. As I noted before, November and December took a lot out of me in so many ways, and reading was one of them. I finished with a solid list, but maybe 30 to 40 books off the projected mark.

So what were my final 2018 books? These:
203. Why Religion? A Personal Story by Elaine Pagels (this memoir/examination of faith by a preeminent religion historian is stunning; I could say so much more but words fail me)
204. Who Asked You? by Terry McMillan (I always enjoy McMillan's writing and this novel from 2013, written on the edge of the heroin epidemic, was no exception)
205. The Names of the Mountains by Reeve Lindbergh (this was a reread of a novel by the youngest of Anne Morrow Lindbergh's children, in which Reeve first explores, albeit in fictionalized form, her mother's dementia)
206. Said I Wasn't Gonna Tell Nobody: The Making of A Black Theologian by James H. Cone (reading #203 led me to Cone when Pagels thanked him extensively in her acknowledgments, mourning his death in 2018 and expressing gratitude that he completed this book, his memoir, of being a "Negro graduate student" who was transformed and radicalized by the Black Power movements in the 1960s, and becoming a Black theologian who pioneered black liberation theology; I cried several times while reading this one)
207. An Old-Fashioned Girl by Louisa May Alcott (while not Little Women [let's face it: nothing is Little Women], this is nonetheless a classic Alcott tale of a poor but resourceful young woman who finds purpose and love in her life; this was, of course, a reread)
208. Belonging: A German Reckons With History and Home by Nora Krug (this graphic memoir is an amazingly open look at the author's research of her German family, their lives in Nazi Germany and whether they participated in the Nazi regime, and her finding a small piece of hope and comfort in tracking down the son of a Jewish survivor who possibly kept her grandfather from imprisonment and prosecution post-war for being a registered Nazi)
209. The Phantom Tollbooth by Norton Juster (a reread of the beloved story of Milo, who finds his way, replete with Jules Feiffer's brilliant illustrations)
210. Sarah, Plain and Tall by Patricia MacLachan (the wonderful Newbery Award novel about two young children and their father "testing" out a mail order candidate for matrimony; known for many years as the "shortest" book ever to win a Newbery, this book lost that status when the Newbery committee honored Last Stop on Market Street, a picture book, with the medal in 2016)
211. The Gnostic Gospels by Elaine Pagels (in the memoir above [#203], Pagels writes about her interest in ancient texts and her writing of this book, which in 1979 caused a great uproar in the Christian theological world; as someone who intentionally (deliberately, thoughtfully) left the Christian faith for lots of reasons, I found this book enormously enlightening and comforting, but I can see why the Christian theological establishment attacked Pagels and this book when it came out)
212. Jacob Have I Loved by Katherine Paterson (a reread of another Newbery classic, this one by two-time Medal winner Paterson, the story is narrated by Sarah Louise, who carries hurt in her heart until she realizes she was loved and worthy of love always)

I finished that last book late yesterday afternoon and wondered which way to turn next. Some weeks ago, I had started The Dollmaker by Harriet Arnow, a gut wrenching Appalachian novel that I read years ago. In light of my Appalachian readings earlier, I had turned back to it, then set it aside when library books, with due dates, flooded in. (Spoiler alert: If the title sounds familiar, there was a made-for-television version decades ago starring Jane Fonda in the lead role: the happy ending manufactured for television is NOT how the book ends!)

But speaking of libraries, my last check-out receipt for 2018 is above, showing that I saved over $3500.00 in checking out library books this year. I don't think our library started tracking checkout costs until March, when it joined a large consortium, so my 2018 savings were probably even larger. Still, $3500.00 is nothing to sneeze at, and when I posted the photo in the 2019 No Spend Challenge Facebook group I belong to, it got a lot of Likes and Loves.

So what have I learned this year?

A lot.

A. Lot.

One thing I learned about myself was that I do not like tracking my reading. I have good friends (Mel especially comes to mind) who faithfully record their reads, titles and authors, in ledgers, some of those ledgers dating back many years. Me? This year was interesting but no thanks moving forward. I read what I read and if I feel like talking or writing about it, I will, but no more lists.

What else have I learned? More than ever, my 2018 reading, which included some very deliberate choices, slammed me in the face with what privilege I have as a white reader in a country which primarily publishes (and reviews and promotes) white authors.

Holy smokes.

One of the challenges I set out in early 2018 was to read through this list of 46 books by women of color. Our library consortium contains all but three of those books, so I had 43 books to read. As of yesterday, I had read 38 of them (88%). Many of those books, especially the essays and even the acknowledgments, led me to other authors of color of all genders.

And it was a humbling experience. I had to read outside my box to see the larger picture. And it is not that this picture is "new" or the result of the current administration, loathsome and racist as it is—this reality of racism and bias and "otherness" has always been here in this country. Always. I am the one who has failed to acknowledge it in any significant way.

I could not read authors of color in 2018 without recognizing this over and over and over again. I could not look at the publishing house lists and the New York Times book reviews without seeing this. I could not think of books for my grandchildren (the two here and the one coming) without wondering what I get to read to them. (Other than Last Stop on Market Street for both households!)

"Own your privileges," say writer Roxanne Gay and social activist Vijay Gupta, among many others. Here are the privileges I own: as a white person, as a woman of a certain age, as a college educated woman, I have so many privileges that I more than take for granted that allow to move through my day and my life without hassles, without setbacks, without struggles. Yes, I have had other setbacks and barriers, socio-economic and family of origin issues chief among them, but my white status has given me a leg up. These privileges are so inherently a part of my life that I don't even think of them. And reading books by authors without those privileges made me have to face those privileges, have to think of those privileges, and, like Vijay, think of how to move ahead not taking those privileges for granted but using them in ways to move us all forward. To paraphrase and turn back on myself a Black food activist quoted in Buttermilk Graffiti (#135), what am I willing to give up so that others may succeed?

A most apt question on which to start a new year, especially as I am starting to take a deeper and longer look at time and especially my health, which continues to decline, albeit slowly and gently. In my daughter-in-law's (and grandchildren's) culture, death is often spoken of as the person "walking on." I have seen my life, especially in recent years, as a long walk first towards and now into the foothills of the mountains, knowing that my old companion Death is walking alongside me. When I walk on, I want to have left this community in better shape. And more than ever, many of my readings in 2018, by those shut out, have moved me to greater commitment than ever.

Here's to 2019, and all the books it may hold for all of us.

Saturday, October 27, 2018

Where That Fork in the Road Went

Seven years ago, I wrote about mom showing signs of of dementia and our first family conversations with my dad about it.

Seven years ago.

Over the many months since then, my mom's cognitive capacity continued to decline, sometimes in fits and starts, sometimes in steep, rushing leaps, and sometimes in barely perceptible shifts. And through it all, my dad soldiered on, taking care of and looking after the woman he loved, even as the woman he had known for most of his life had all but disappeared.

Not that we were negligent as children. My brothers, my sisters-in-law, my beloved husband, and I all kept tabs on dad, asking him what help he needed, urging him to call upon us. "I can do it for now," he'd reply. "I'll let you know when I need help."

We'd talk to him about bringing in some outside services, even on an occasional basis. Meals On Wheels? Someone to clean house? Anything?

"No, I'm not there yet," dad would reply. "I don't want to upset your mom with bringing in someone, and I can handle it."

And he did handle it—"it" being the myriad of daily tasks and duties to keep the household going, to keep mom oriented, amused, and cared for, to care for himself, the too large house, the oversize yard. He handled it and handled it, despite the enormous toll on his own health, right up until about ten days ago. That was when mom fell getting up in the middle of the night, breaking three ribs. That episode unraveled into a series of squad calls for assistance getting her in and out of bed, trips to the nearby ER, consults with social workers, and long, serious faces on the hospital personnel. It culminated in the day when he went to the bathroom and came out to find her gone, only to go outside and find her on the ground where she had fallen, hitting her face, when in her dementia she had decided to take out the garbage. With squad help, he got her into the house. That night, she woke him, telling him she felt she was dying. We all spent a long hard, day at the ER again, while decisions were made.

We spent the rest of the week with mom in a local rehab/memory unit: understaffed, shabby, institutional, and, unfortunately, full of bad memories for dad from 30 years ago when his own father was in the same place. They treated mom well, but it was not a solution.

And then my brother Mark and his wife Jackie did some research and found a memory care unit in a new, home-like senior facility in their town (20 miles away). Dad went out to tour it with them, then came back to town and announced he was moving mom.

We made the move yesterday, "we" being dad, Mark, Jackie, my other sister-in-law Kate, and I. The facility director was calm and helpful: make it look like home (most of their bedroom suite of the last 60 years went over), let us transport her from there to here, please don't come for the first five or so days. So we spent the morning setting up mom's new room, and then went away. I was at the local facility with Kate when the new director showed up to pick up mom; mom was thrilled to be going for a ride. She said hello to us and kept right on going. She reminded me of a little kid: so eager to have the new experience that she didn't even look back.

Dad is struggling with the decision and holds to the hope that mom will be "better" and he can bring her back home. Mark is worried dad is waffling. I suggested we just let the dust settle and let him voice his fears and wishes without trying to point out that mom is never going to get better and this is best. We are all in chill out mode right now.

After I finished up the parent-related tasks yesterday afternoon, I headed down the road to visit Aunt Ginger in her memory unit. Ginger was in good spirits and we had a long chat. She was convinced she had just moved from her apartment a week ago (it was well over a year ago) and was stunned when I said "you've been here for over a year." She talked about her job, one she retired from over 30 years ago and mixed then  ("I retired early, didn't I?") and now ("I'm glad I retired last month. That was getting hard on me.") and then included her friend Esther, who was sitting in lounge with us, in the sweep of those she had worked with for so many years.

Esther didn't mind; she was telling me how her mother had told her this morning that she needed to wear her new jeans. (Esther is in her 80s or 90s as well.)

"And I did, April!," she said, beaming and pointing to her jeans.

Esther was happy. Ginger was happy. I was happy. We were all happy in the memory unit.

Here's hoping my parents' long road to here is likewise lined with happy moments at this time of life.

Friday, March 2, 2018

February Finances


As I have written before, I am continuing to track my monthly grocery/household expenses, as well as eating out expenses. My goal for 2018 is to bring the monthly grocery/household expenses down to $175.00 a month, and to keep the eating out tab as low as possible.

Our groceries/household expenses for February edged up from the January figure. We spent $168.57 on food and $17.49 on household (such as laundry detergent, toilet paper) for a total of $186.06. Some of our grocery expenses were higher due to the circumstances of this month. Warren was juggling Symphony, rehearsals, day to day life, and my being homebound from surgery. That meant more groceries were purchased at Kroger, often quickly at the end of a long day, and less at Aldi.

There is a price differential between the two stores.

Being the math geek I sometimes am, I immediately calculated what we have to hit monthly for the rest of the year to come in at $175.00 per month. The formula would be $345.50 (the money spent to date) plus 10 months at divided by 12 months to equal $175.00.

Solve for x. 

And the answer is?

$175.45.

How great is that? I can hit $175.00 a month by spending $175.00 a month from here on out.

Eating out was only slightly lower this month. Warren had a series of rehearsals and a concert out of town early on in February  and spent some money there ($10.00 over 3 days). We took my parents out to lunch for their wedding anniversary, with our share of the meal coming to $14.58 with tip. The monthly total came to $38.11 (counting tips). It would have been under $24.00 but for the anniversary meal and under $14.00 but for the out of town rehearsals and concert. I point that out because out of town rehearsals/concerts are infrequent. The meal out with my parents was slightly different. As my mom's dementia deepens, her comfort level in restaurants decreases. She is happiest now at McDonald's and Bob Evans. Out of concern for mom, we went to Bob Evans, which ranks really, really low on my "let's eat out" list. (Who am I kidding? But for mom, I would not be eating there at all.) With my still not being "out and about" this month, I predict we'll really drop the cost of eating out (which, remember, includes takeout as well).

I am back at work (thanks to my trusty scooter) and have even ventured with Warren into Kroger and Aldi (and Meijer), so we can share more of the grocery shopping once again. I predict we'll hit the $175.00 mark in March without even breaking into a sweat.

March came in like a lion, so it should go out like a lamb. I'm hoping to keep the financial front as meek as a lamb as well.

Saturday, December 10, 2016

Inch One Hundred Forty-Eight: Christmas Memory

Last week I wrote about my Aunt Ginger, with whom I spend more and more time each week. In addition to being physically frail, Ginger also has dementia, which has been making steady inroads in her mind. I am Ginger's caretaker; I watch after her money, take her to all medical appointments, and in general try to help her navigate old age as independently as possible for as long as she is safely able.

On Friday I took her to a medical appointment, and on the way home we talked about Christmas cards and how many people still sent them, and whether she had done hers yet (next weekend, Aunt Ginger, next weekend). This topic repeated for several miles, until we got back into downtown. Then Aunt Ginger said, still thinking of Christmas, "well, you know, the boys rung the bells and then it was Christmas."

I asked her which boys, what bells? Church bells? Sleigh bells? What memory was she dredging up?

Aunt Ginger was quiet for a moment or two, then said "Mom and Pop always had a tree, but it would be bare underneath. There were no presents underneath and we would go to bed Christmas Eve. Then in the morning, in the dark, some boys—it must have been my brothers—would ring a bell outside and that would be Santa Claus. Because we didn't have a chimney, he had to deliver to the house. And the presents would be on the front porch and we would bring them in and then have Christmas, because Santa Claus had been there."

She remembered that the presents were simple, and that there weren't a lot, because it was the time of the Great Depression. 

I know the house my Aunt Ginger grew up in, because it was the same house I grew up in. It had a long, narrow hallway from the front door to the first floor living room. I wonder whether the brother ringing the bell stood in the hallway, out of sight, and rang some sleigh bells. I wonder whether the presents were in the hallway as well; even in the 1930s, I am not sure my grandparents would have left presents out on the porch in the cold.

But I do not doubt the story, even if the details are fuzzy. The brothers would have been 13 or more years older and probably more than willing to join in the fun. Assuming my mother was in the picture, we are talking late 1930s, when Aunt Ginger would still have been in grade school and Santa still would have been real. I can only imagine the excitement on the girls' faces to know Santa had come and left something for them. 

The brothers are long gone. The family home was sold many years ago. More and more memories for my aunt are erased. But somewhere, in the swirl of Aunt Ginger's mind, there is the empty tree, the ringing of bells, and the joy of Christmas. 


Saturday, December 3, 2016

One Hundred Forty-Seven: Ginger Rogers

I took Aunt Ginger to a funeral today. A classmate with whom she had gone to school all twelve years had died and Aunt Ginger wanted to be there. At 87+ years old, Aunt Ginger is starting to be frail and wobbly on her feet. The day is long gone when she could put on her coat, quickly walk the almost four blocks to the funeral home, and walk home, especially on a cold, gray day. Her physical decline, coupled with her advancing dementia, made me call her and say "I will pick you up and take you."

I did not know this classmate, Phyllis, although I had heard about her over the years. I'll give credit to the minister leading the service; he painted such a picture of Phyllis that I felt I did know her by the time the short service was over. The funeral home was crowded and Aunt Ginger sat right in front of me. As the minister recalled this or that story about Phyllis, I could see her head nodding in agreement.

The minister then called for anyone who had a story to stand and share it. One nephew spoke up about Phyllis's kindness to his mother during a lengthy illness and decline. Another family member spoke about Phyllis's lasagna. I stood up and told a story I have heard many times.

I introduced my aunt, explaining that she and Phyllis had gone to school together starting in elementary school. Phyllis's maiden name was Rogers. My aunt, whose proper name is Virginia, had already adopted "Ginger" as her name at a young age. The two would often walk home together. One crossing guard, no doubt a lordly 6th grader, would stop them and demand to know their names.

"What is your first name?," he would say to my aunt.

"Ginger," she would reply.

"And what is your last name?," he would say to Phyllis.

"Rogers," she would say.

He would then make them say "Ginger" and "Rogers" over and over until it was a duet of "Ginger Rogers," before letting them across the street.

When I finished my story, Aunt Ginger turned to the man next to her, who was one of Phyllis's nephews, and said "and that's a true story."

The Ginger Rogers duo stayed friends their entire life, despite taking markedly different paths through life. And today I am grateful I got to bring the surviving member to say goodbye to her partner from long ago.

Friday, May 13, 2016

Inch One Hundred Seventeen: Windings

I have the day off and have spent the morning running some errands and doing some chores. I needed to stop at my Aunt Ginger's apartment, a block away, to get her signature on various documents for an upcoming medical appointment. While there, I asked her if she wanted to come out with me while I went to the bank, and then take a drive.

Ginger jumped at the chance. As she ages, her world becomes smaller and smaller. A car ride is a great opportunity to see some sights.

After a stop at the drive-through bank, I told her we were heading to the East Side, the side of town where we both grew up, the side of town where Ginger lived more than half her life. She would like that. So I headed across the river, turned on Milo, and turned up Flax Street.

The house—the one her father built, the one she lived in for almost 50 years, the one I grew up in—still stands. It has been clad in vinyl siding, replacing the old, soft white asbestos singles that used to cover it. I had to point it out to Ginger: between her fading memory and the different appearance of the house, she wasn't sure which one it was. We turned up Carlisle to Delta, passing the house that Mrs. Willis lived in throughout both our childhoods, turning past the house that was always Aunt Jane's house and, before that, my great-grandfather's house. She commented on all the new houses in what used to be large lots; Habitat For Humanity has transformed the neighborhood. We drove past the old junkyard, long decommissioned and now empty. We turned back down Flax and I commented that whoever owned the Flax Street House had fenced off a small part of the backyard and let the rest to the north go to trees and brush. It gives the backyard a wild, enticing air.

I then drove Ginger out of town, first to the cemetery where her parents and her paternal grandparents are buried. Three of her infant brothers are out there, as well as Uncle Arthur, who died in combat in World War I. We walked slowly back to the graves, Ginger holding firmly onto my arm. From there we went to the Kilbourne cemetery where my brother, my dad's parents, and my infant sister are buried, and where my parents and Aunt Ginger will eventually be. Then we turned and headed back to Delaware.

At 86 and several months, Ginger is unsteady on her feet. Her body is slowly winding down: the bones ache, the arthritis flares, the gait is shaky and uncertain. She always takes an arm when it is offered.

Her mind has been winding down for the last few years as well. There are more and more gaps in her short-term memory, and I have taken over most of her responsibilities for appointments and financial matters. She may ask the same question several times; today's question was whether she had a headstone yet. But Ginger's sense of humor is intact, and her memories of long ago, even though repeated more than once in a conversation, are still strong. Today the talk was of an adult neighbor up Flax Street who had dirty feet (Ginger knew this because the woman went barefoot and often propped her feet up on the porch rail) and the proprietor at the little corner store who ran a numbers racket on the side back in the 1930s. We shared memories of Aunt Jane, her older sister, and laughed together.

At 60, I am aware of my own winding down. Some of it is just being reflective of my age, as in both "I never though I would make 60" and "so this is what 60 is like." More of it is my awareness that the myeloma is wearing me down. In my most recent Myeloma Beacon column, to run later this month,  I compare myself to Tik-Tok of Oz, Baum's mechanical man who was tireless as long as he was wound tight, but who came to an abrupt halt when he wound down.

At this stage of the myeloma, I too am starting to wind down.

We had a beautiful morning, my aunt and I. We laughed, we talked, we wound our way around the county from town to rural cemetery to rural cemetery and back again. By the time I walked Ginger into her apartment, she was glad to be home so she could rest. She is winding down. By the time I drove the block to our house pulled in, I was glad to be home as well and for much the same reason.

I am discouraged somewhat by my winding down, but not surprised and, so far at least, not overwhelmed by it. For some months, I have been coming to the realization that I am having to learn how to say goodbye to the world. Even so, there are still those moments, so many moments, of incredible joy and delight and wonder. I would say even at the lowest points, joy and delight and wonder still light my path.

One of today's joys was being out with Aunt Ginger, just two aging women who are winding down, winding through the county and through our memories.


Saturday, February 27, 2016

Inch One Hundred Six: Common Ground

I did not recognize the number registering on my cell phone, but I took the call all the same.

"Ms. Nelson? This is Mike from [non-profit organization] and I'm returning your call."

Ah. I had left this group a voicemail earlier in the day regarding a notification of a $35.00 pledge made over the phone by my Aunt Ginger. In my message, I had said I did not accuse them of  doing anything wrong, but be aware that my aunt has dementia and has little awareness of the frequency of times she donates by phone or mail. I asked them to cancel the pledge and remove her contact information from the group's fundraising banks.

Mike was quick to say that the organization would remove my aunt's information from their donor data base.

Thank you.

That should have been the end of the conversation, but Mike wanted to keep talking. Not about his organization, but about dementia and the harsh toll it extracts. He related two stories involving elderly friends with dementia.

You could hear a palpable sadness in Mike's voice.

"It's a terrible thing, dementia," he said, finally winding down. He reiterated that he would make sure the organization would remove my aunt's information, thanked me for contacting the group, and thanked me for listening.

When I finished the call, Warren said, "What was that all about?"

What was that all about? On the surface, it was a non-profit that took a pledge from a sweet, elderly lady who forgot the call and the promise within a minute or two of hanging up the phone. Kudos to Mike and his group for recognizing that and righting the situation.

At a deeper level, it was a thread of sameness between Mike and me. We stood on common ground, the ground of dementia and what should have been a routine call became a chance to empathize and connect with someone who knew that ground.

Watching dementia make inroads on Aunt Ginger is sad and wearing. She continues to be self-sufficient in personal matters (hygiene, housekeeping, attending church); both her doctor and I keep tabs to make sure she is not losing those areas of capacity. But other details, especially of money and time, are increasingly too complex. She is frustrated with the growing memory gaps and losses. As of late, I have watched and listened as her sharpest memories, those of her youth, grow soft and worn around the edges. Bit by bit, the dementia is erasing who she was and recreating almost daily who she is now.

That is the reality of dementia.

In the end, it was just a phone call from a non-profit organization recognizing it had to undo a pledge. in the end, it was just a guy sitting out in California, doing his job.

In the end, it was just Mike, performing his job, then taking a deep breath and saying, "I know how hard it is with dementia."

Saturday, February 20, 2016

Inch One Hundred Five: Small Notes

I was in Rochester, Minnesota, or in transit to and from the same, for much of last week. This week I have been dazed from the travel, dazed from the intensity of work (it is the heart of the truancy season and I am mediating attendance issues in schools throughout the county, usually several a day), and dazed from just the rush of things: oncology, legal clinic, work, home, truancies.

So this will be neither a long nor a complex post. Simple accomplishments, once I stagger home from work or from the infusion center, are about all I am capable of. Today, that meant getting laundry done, doing a very, very light grocery shopping, and tending to a handful of tiny tasks. I have letters to answer and other work to do, but it all has to wait. When it becomes too much, I retreat to a book.

One thing we ("we" meaning Warren and I) did do today was attend the annual Delaware Lions Club pancake breakfast. We took along Aunt Ginger, and had Warren's son David meet us there. Ginger loves outings like these and she loves pancakes. She ate with enthusiasm and pleasure. Because of her advancing dementia, she would look at someone walk by, then turn towards me and say "That person looks familiar. Who is it?" After about the tenth inquiry, I laughed, hugged her, and said "Ginger, everyone looks familiar to you."

I just finished reading the collected letter of Ursula Nordstrom, the children's literature editor at Harper for a huge chunk of the 20th century and a woman who broke through the male-only world of publishing and rose into the upper echelons of the business. The book is called Dear Genius and I loved it so much I found a used copy on Amazon and bought it just so I could return to it time and time again. Nordstrom edited E. B. White, Maurice Sendak, and Mary Stolz, among others. As my friend Margo pointed out (and thank you, Margo, for telling me about the book), one of the few major children's writers of the mid-twentieth century Nordstrom did not edit was Beverly Cleary.

Right now, though, I am reading In The Slender Margin by Eve Joseph. Subtitled The Intimate Strangeness of Death and Dying, it is holding me spellbound.

As I said, a short post. A simple post. More later.

Friday, December 5, 2014

Inch Forty: Furniture

November was a stressed and hectic month in the family. My mother had a long-overdue knee replacement early in the month, and the triple whammy of major surgery, great pain, and dementia took a toll on all of us, but especially my father. While he was relieved of the 24/7 duty of steering my mom through the day, he all the same spent a huge number of hours by her side as without him to interpret the world for her, she is increasingly lost as to day, time, conversations, and events.

One day early in the nursing home stay, my dad and I went room to room in the upstairs of their house looking for a sewing box that is apparently non-existent now. (And where is the button tin, I wonder?) We opened countless dressers and bureaus looking for the safety pins I had hoped to find in the sewing box.

We never found the pins. But we did find drawer after drawer of abandoned projects: plastic canvas and yarns, aging sewing patterns, brightly colored material that may have been meant for a quilt. Dad quietly observed that my mother would never finish these now and I was almost tempted to offer to clear them all away, but wisely kept my mouth shut.

As we finished opening and searching the last drawer, Dad commented that he had an upstairs "full of old furniture." He's right. One room contains a stout bureau, stripped and refinished, that in my childhood had been a battered glossy white with a Roy Rogers decal on the top drawer right between the two pulls. Then there is the bureau at the top of the stairs, with drawers ranging from shallow at the top to deeper at the bottom on the left half, the right side being a door that swings open to reveal a large storage area without shelves or divisions. It is a dark piece and the wood of the door is very thin. When I was young, my mother stored flannel sheets and blankets on the right side.

I always liked that piece of furniture. There would have been a time in my life when I would have loved to have had that piece in my own home for sentimental reasons. But none of the furniture was ever proffered to any of us and it has all set in the empty upstairs for long years.

And now I am of an age and at a place in life when acquiring furniture, even childhood pieces, holds no appeal for me. I want less stuff, not more. I cannot imagine passing these pieces on to my children. In addition to the cost and risk of shipping them west, these pieces hold no emotional weight for Ben or Sam because they didn't grow up with them like I did.

I do not know how much longer my parents will remain in the house. It is a large, old, limestone structure, the second floor and basement out of reach of my mom, the bathroom a tiny, narrow add-on long after the original house was built. When they bought it in 1970, both my parents were in their 30s, with younger children, plenty of energy, and lots of dreams. That was almost 45 years ago. Now it is obvious that the house was not built for an elderly couple, one of whom has mobility problems. Dad has observed more than once that the house and yard (an acre) and outbuildings are increasingly more than he has the time and strength to tackle on a daily basis. Time, especially as my mother's needs grow, will be at an even greater premium than it already is, and the deep reserves of energy and plans my parents both once possessed have long been spent.

And when my parents do leave the house? There'll be an upstairs full of old furniture along with everything else: abandoned crafts and abandoned dreams, old blankets and old photographs, and the faint whisper of memories.

Friday, September 12, 2014

Inch Twenty-Nine: Spilt Milk

Wednesday morning started with the brilliant idea of making the instant pudding first thing in the morning.

Let me explain. We have my parents over for supper one night a week, giving Dad a break from the almost constant care he provides for Mom. A staple at every meal is instant sugar-free pudding, a dessert that my dad, who is diabetic, can eat and one that my mom absolutely loves. I will not eat the stuff, but I am more than willing to provide an easy finish to the meal, one that Mom treats as a delightful discovery each week.

I mix the pudding in the blender, then pour it into individual serving cups. Not counting cleanup, we are talking about a couple of minutes of work. Thinking I'd get a jump on the late afternoon supper, I thought I'd prepare the pudding in the morning while the oatmeal cooked.

Two cups of milk, get ready to add the mix, WHY IS THERE MILK RUNNING ACROSS THE COUNTER?!

A swipe of my left hand saved the milk from cascading onto the kitchen floor. My right hand grabbed the blender and dumped it into the sink.

Two cups of milk down the drain, literally and figuratively.

It turns out that whoever reassembled the blender last put the rubber ring on the wrong side of the blade. No seal, lots of mess.

After wiping up the milk, then rinsing and reassembling the blender, we went ahead and ate breakfast, the oatmeal being long done. I stewed over the mishap while we ate. Lost time, lost milk, a mess to clean up, so much for planning ahead, and on and on. I even brooded over the fact that I don't even like this blender, it being an inexpensive (read "lightweight plastic") replacement for the heavier glass blender I used to have. (A blender that I shattered into a million pieces when I dropped it on the concrete basement floor several years ago, which caused me to reflect on why I even thought it was a great idea to move the blender to the basement to begin with.)

Then Joyce Yates, my son Ben's fifth grade teacher, popped into my head.

"Don't cry over spilt milk."

Joyce taught her students that maxim to give her students a quick way to move on from their mistakes. It was a handy lesson and a useful tool for a group of 10 and 11 year olds. Ben took it to heart enough that he quoted it back to me when I was stressed out over a mess I had made.

"Don't cry over spilt milk, Mom."

Joyce was right. That long-ago Ben was right. I stopped brooding, finished my breakfast, reassembled the blender, made the pudding, and moved on. Still not my favorite blender, still not how I planned on starting the day. But the pudding was done and I wasn't wasting more of my day crying over spilt milk.

And Mom's joy at supper when I brought the pudding out was unmistakable. "Oh, this is so good!" she exclaimed, digging her spoon in with glee.

And it was.

Friday, August 22, 2014

Inch Twenty-Five: Straws

It has been a bumpy couple of weeks since returning from Chicago. Two fellow columnists at The Myeloma Beacon died while I was away, which caused me to scrap the topic I'd plan to write about in August and write about dying and death instead. Death and dying still remain taboo topics by tacit agreement, even at a website dedicated to an incurable, terminal cancer. Cancerland has been a hotbed of activity lately for several friends, and I came back from our trip feeling as if everything had fallen apart while I was gone.

It turns out more than just Cancerland had fallen apart.

My aunt Ginger, who is meandering towards her 85th birthday, somehow gashed her leg while we were out of town. With her increasing dementia (the family curse), she could not remember how or when, but by the time we returned and I got her to her doctor, an infection had set in. There have been rounds of doctor visits, rounds of antibiotics, rounds of my stopping by daily to inspect and then bandage the wound. The physical stress has sent the dementia into a higher frequency, so I have taken control of the antibiotics, so she doesn't take too many in one day, as well as the bandages, tape, and topical ointment for her leg, so she doesn't redistribute the items throughout her apartment, an activity that caused me several merry mornings of "where did she put it today?" Ginger lives a block away, and I carry all the items, including the antibiotics, in a little blue bag. Our public schools went back into session last week, and as I trot back and forth between Ginger's apartment and our house, I feel like a school girl swinging her lunch bag.

In addition to my job at Juvenile Court, I recently took on a fast track court project at Municipal Court, where I used to work. I agreed to the project after a discussion about community legacy building with my good friend Doug, who lives in Cancerland. This new project is legacy building. I committed to the project before Chicago, which means I didn't yet know that the routine with Ginger was going to unravel at least for a few weeks.

Not that I'm counting days. Not really. I feel more like the proverbial camel with the bundles of straw mounting on its back.

My health continues to be baffling. Great lab results, inconsistent physical responses. Earlier this week, my oncologist listened to me, looked at the labs, and  then scratched his head. Who knows? Another round of Revlimid, another rounds of labs in a few weeks, another straw on the camel.

So when our almost-daughter Amy called or messaged me with a series of crises over the last ten days, that was the straw that broke this camel's back.

Wednesday night I collapsed into a puddle of tears. Yesterday, helped along by little sleep and miscellaneous medical issues, I just collapsed, period. At one point, I realized I was channeling essayist Jane O'Reilly, describing her own collapse. "Waaaaah," [Jane] wailed, "bills, soot, work deadlines, interpersonal relationships, urban woes, the meaning of life, inflation, equal rights, the human condition, woe, etc."

Okay, so I don't wail about soot and urban woes. Different lyrics, but the same melody. WAAAAAH indeed!

Earlier this week I finished reading Passages in Caregiving by Gail Sheehy. I cannot say enough about this book, other than I am buying it to own it. Reading Sheehy, I smacked my forehead at the obvious error in my thinking. I am the caregiver for Ginger, I am the caregiver for myself,  I am a caregiver for the court project. And as Sheehy stresses, over and over, the caregiver needs to take care of his or herself as part of the overall continuum of caregiving, which she compares to a labyrinth. Not a puzzle, not a maze, but a path that is not always visible or predictable. Taking a deep breath and a few steps back from the brink, I can see that I let the events and stresses of the last two weeks invade my personal realm. No wonder I collapsed. Protecting personal time and space, including time and space with Warren, is not only important but critical to my being able to take care of health issues, jobs, Ginger, and even the woebegone Amy.

When this camel's back broke, the straws went flying everywhere. Straw is slippery and hard to gather up and put back just as it was before. That's why in On the Banks of Plum Creek, Pa was so upset with Laura and Mary after they rolled down the straw-stack and scattered it in the barnyard. And straw imagery pops up in other places than on the camel. Straws in the wind are portents,  drawing straws signals choices.

I've got straws everywhere.  I may just fashion myself a straw hat and bracelet and go off to see the world.

Sunday, April 29, 2012

Further Down the Road

Saturday was cold and gray and at times rainy and sleety. I spent much of the morning standing outside at the fire station watching firefighter candidates undergo agility testing. (I sit on our city's civil service commission and we are encouraged to watch the testing procedures.) I meant to stop only briefly. I stayed for over two hours, mesmerized by the intensity of the morning. The candidates are put through a variety of tests, from climbing an extended aerial ladder to finding their way by rope through a blackout room.

The most compelling segment for me was the timed shuttle run, where the candidate had to run 50 yards (each way) from the starting point to the relay point, pick up a different object each time (five total), and carry it back to the start. The last object was a small water hose (with the water pressure on) and nozzle, to be pulled from the relay point to the starting line.

As I learned, it is not the weight of the hose that is the killer, but the frictional drag on the line across that distance of pavement. I watched candidates who had sailed through earlier parts of the test (including the timed run three times up and down two flights of stairs loaded with gear in under two minutes) all but grind to a stop on the last leg of the shuttle run. They would be down to the last ten yards, the last five yards, and have to gut it out inch by inch to make it to the finish line.

One candidate fell to his knees, then rolled onto his side just a few feet short as the clock ticked down. Firefighters and candidates alike were shouting encouragement: "Get up! You're almost there! Dig it out! Dig it out!" He couldn't. When the tester called time, the candidate struggled to his feet, made it to the grass, and then fell to the ground again. He pounded the earth in frustration, planting his face in the grass and looking for all the world like a ballplayer on the losing team just after the last buzzer in the final NCAA basketball tournament.

His anguish at falling short was acute.

When a candidate washes out at the agility test, there are no "do overs." The candidate is done. Before one leaves, however, the Chief meets with that candidate for an exit interview. John Donahue, our Fire Chief, is superb and I suspect he does no small amount of counseling to help the candidate come to grips with the failure. Certainly this one, by the time he left, had a calmer look on his face and gave the Chief earnest thanks. The anguish may have still been there, but for now it was tempered.

Cold finally drove me away. After picking up Warren at the office, we came home to spend the rest of the day doing home-based things: instruments (Warren), laundry (me).

The anguish of the young candidate stuck with me all day. The situation with my mother, who is showing increasing signs of significant cognitive impairment, is moving to what I am calling "the next stage." Other people outside the smallest family circle are starting to notice things are amiss. Dad is starting to look haggard. Over the last several days, I've had lengthy phone and email conversations with two of my brothers regarding where we are now at. Dad has finally acknowledged that he is wearing down. We are looking into support groups. These conversations are necessary but draining, and I hang up or log off from them worn down myself. They are fraught with the possibility of misunderstandings even when we are all on the same page, because we are all filtering the story through our own relationship with our parents.

And then there is the mourning that I am doing and suspect my brothers and dad are too. It is hard to watch mom disappear. Add to that the complicated relationship I have had with my mother--a relationship I will not be able to go back to and finish smoothing out--and I worry that I am not up to the challenge of being a good enough daughter.

It is enough to make me fall to my knees and pound my frustration into the earth.

By Saturday night, I was tired and anxious and my chest was tight. So I turned to food--not to eat, although I did that too--but to make, to cook, to bake. Supper was a container of ropa vieja I found in the freezer (wisely set aside weeks ago by the Suzy Homemaker I sometimes internally harbor) that was just the right size for supper for the two of us. The house was scented with the pickling spices from the candied dills I made that afternoon, laced through with the cinnamon of the sauteed apples I'd prepared for homemade apple dumplings. Warren brought in a bucket of wood scraps for the fireplace and late into the evening we ate warm apple dumplings and watched the flames churn.

By happenstance, I am reading right now Making Piece, by Beth M. Howard. It is a memoir of "love, loss, and pie." (You know why I am reading it: pie.) I will not review it here, other than to say it is a keeper. But as I read it last night by the light of the fire, I realized that what I had been tasting all day was loss.

While the last of the apple dumpling dissolved on my tongue, I thought back to the candidate who had washed out that morning at the agility tests. His anguish was real and immediate. His grief was right there on display for everyone to see. But by the time he left, the Chief accompanying him out and sending him off with a hearty "Good luck," the candidate had regained his equilibrium. He waved at the firefighters and candidates who wished him well, and headed for home.

When I think about what we are facing as a family with mom, I feel not unlike that candidate. The clock has run. We don't get a "do over." It is time to come up off my knees, it is time to head further down the road.

Tuesday, November 1, 2011

A Fork in the Road


“When you come to a fork in the road, take it.” Yogi Berra

The summer was a long road through concerts, through visits from Sam and trips with David, through Amy moving in. It wound through medical procedures sprinkled liberally on the older tier of the family. It rolled on through private times and public times.

The road rolled on into fall.  The medical matters are winding down. Symphony seasons have opened, first in Mansfield and then here in Delaware. Indianapolis and the percussion convention are just ahead, as is New York again for the orchestra conference. Halloween is just past, more holidays are in the offing.

The road indeed goes ever on, but we have come to a fork.

Over the last several months, my mother has been changing, slowly but surely. Her once frequent phone calls have now all but stopped. After a lifetime of dominating any conversation, she more often than not is quiet. When she pulls up short too many times in a conversation, stymied as to what comes next, she covers with “I’m brain dead” and makes a joke. She asks the same question within a few minutes of first asking it. And when those rare phone calls do come and she repeats the same story for the second time within minutes of the first telling, I afterwards hang up the phone quietly and just stand for a minute, gazing out into the backyard.

Some of us – “us” being me, my sister-in-law, and two of my three brothers – started comparing notes many months ago. Because Mom had major surgery earlier this summer, none of us said much more or raised the issue with Dad while they were preoccupied.

But we were watching all the same.

Recently, my youngest brother Mark and I, after weeks of comparing notes and concerns and fears, agreed it was time to say something to dad. With the backing of our spouses, we came up with a plan to meet at mom and dad’s when Mark and I could both be there.

Mark arrived first to work on his car; he phoned me to let me know he was en route. I arrived a little later to look for canning jars stored overhead in the garage. Dad, already out in the garage talking to Mark as we hoped he would be, climbed up with me to help get the jars down the stairs. After we both were back down the stairs, I asked, as casually as my suddenly uncertain voice would allow, about mom’s upcoming visit with her family physician. 

Mark shot me an appreciative look as dad answered. I then asked the hitherto unasked question.

“Dad, is mom all right?”

Mark stopped working. Dad looked at me. He hesitated in replying, and I took the pause to jump.

“I’m asking because we are noticing things.”

Dad cut right to the chase, which is his style. “You mean her memory? Yes, there are problems.”

The tension sagged out of the air. We all talked then, throwing our worries and notes one by one onto a growing stack. Dad listed the changes that he lives with now, both small and big changes of which we weren’t aware.  She has stopped reading books, which saddened me. She still works crossword puzzles, but more and more she asks my dad for help on the clues. Dad, a notoriously poor speller, barked a short, rueful laugh at this turn of events. 

The pile of worries and observations grew larger. It was painfully clear that mom is showing increasing signs of what the medical world calls “cognitive impairment.” It was painfully obvious that dad was relieved that he didn’t have to break the news to us.

Finally someone, Dad perhaps, said the word out loud.

Alzheimer’s.

Mom hates that word. Mom is terrified of that word. She much prefers “dementia,” which she thinks of as a different, less severe illness than Alzheimer’s.

Dementia, Alzheimer’s, senility.

The words all mean more or less the same thing: our family is at a fork in the road. And when you come to that particular fork, you take it. You have no choice. Mom has turned down a twisty fork that goes way over that way while the rest of us are still on the other path over here. We can still see each other and talk and laugh together, but looking up ahead, we know that at some point her path will diverge more steeply from ours and while we will always be able to see her on her path, she will no longer see us on ours.

In 1994, former President Ronald Reagan released a written statement that he had been diagnosed with Alzheimer’s. He did so in the hope that others might be encouraged to seek early intervention and diagnosis, writing “I now begin the journey that will lead me into the sunset of my life.”

We are all journeying into the sunset of our lives. My dad does not pretend at 78 that his sunset is not most likely right around the corner. I know that my sunset will very likely come far earlier for me than if I had not been diagnosed with an incurable cancer.

And my mother? I fervently hope she is walking along, marveling at the brilliant golds and reds in the west, happily unaware of the gathering shadows of the oncoming night.


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Postscript





I have had this piece written for several weeks, and delayed posting it until now. It has tugged at my conscience, it has pulled hard at my heart. My mother's cognitive impairment is a very difficult topic because it is so personal and so immediate. What finally made me decide to post it was my saying out loud, as I thought through the post for the nth time, "what is my motive?" 

My motive? To know that I am not alone. To know that we are not alone. 

I wrote this in mid-September and am posting it now in November. Some things are unchanged, especially mom’s continuing decline. What has changed is that we are now speaking aloud to each other about what is happening, at least to one another.  

No one mentions it to mom. (For those of you who know my mother, I would ask that you not feel you need to break the news to her.) I don’t know which of us will undertake that task. Dad recently tried to and she became so distraught that he quickly backtracked and calmed her down. 

It does not surprise me that he cannot bring himself to break her heart. My father has spent 59 years being protective of my mother. It seems that he is growing even more so as she slips away. He has spent his whole adult life calming her fears, giving her reassurance, being there for her. 

It does not surprise me that he will go along with her on the road for as long as possible. He will make the path as smooth as possible; he will stoop to clear away any debris.

Dad will hold mom's hand for as long as he is able.

My dear friend Katrina wrote me a long letter about what we are facing, having gone through it herself in her family. It was thoughtful and heartfelt, so much so that I copied the lines and sent them on to Mark so he and his wife could read them. She closed her comments with this: Finally, enjoy your Mom as much as you can for as long as you can. There will be glimmers of gains and lots of puddles. Only God knows the timing and we all have to live with that.

Enjoy your Mom as much as you can for as long as you can.   


We plan on it.