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Together Again

As we came up the escalator at Denver International Airport, my mom and brothers, David and Dan, were all waiting in the crowd with huge smiles on their faces.  Fern had arrived!  When my mother and aunt clung to one another laughing and smiling with heartfelt emotion, it brought tears to my eyes.  Like a marathon runner who had finally crossed the finish line, the emotions I’d been stuffing away began to emerge and I tried to compose myself as we all hugged hello.  For me, there is nothing like family to bring strength, comfort and a sense of place and belonging.   I know this isn’t true for everyone and have always cherished the fact that, for me, this is one of the real blessings in my life.

We gathered back at my mom’s house with Fern’s suitcases and Davie dog in tow.  The moving van with what was left of Fern’s possessions would be coming in a few days.  Fern would move into what my mom always called, “Susan’s room”, although I never lived in this house.  It was a comfortable, sunny room furnished with the white dresser, headboard and desk from my teen years.  As they all talked downstairs, I began unpacking Fern’s things.  When things were in place, I took Fern upstairs to show her the room and she was so pleased to be there.  “Anywhere is fine, so long as I’m with my sister,” she proclaimed as she hugged my mom.

The next few days were enjoyable for them but the challenge was Davie dog.  His need to bark incessantly so no one could hold a conversation was clearly going to be a problem.  He was only quiet when Fern was holding him so that is what she did most of the time.  There was some tension about the dog but I hoped it would resolve itself over time as he became used to my mom and brother and his new surroundings.  I was ready to depart the next day to get back to my life in California and I started talking with them about what furniture we brought of Fern’s and where we might incorporate some of her things into the house to make her feel more like a resident than a guest.  It was difficult for them to imagine how to fit it all in because clearly mom didn’t want to put away any of her things.  That angst in my gut returned and I talk with my brother about the importance of incorporating Fern’s things into the house.  David had a lot of influence with my mom and he promised to do his best.

In retrospect, I realize the huge burden that we laid at the feet of my younger brother as the primary charge of these two elderly women.  On the surface one might think, “How hard can it be?”  They were both mobile, self-sufficient and self-directed.  Yet it is in the details of everyday living that the burden of responsibility begins to surface.  Being the maternal person and project manager that I am, I began to review with my brother a “mommy list” of things to do, know and consider; integrating Fern’s things into the house; taking them out from time to time; making sure they were practicing good hygiene, eating properly and taking their meds.  The meds were probably the scariest thing.  So many for each of them.  As we looked at all the bottles on the counter and prepared to set up a weekly case for each of them, it became clear that this was a job done best when one could focus and not have interruptions.  For me, this has always been the biggest nightmare of caregiving – the meds.   As Davie dog barked in the background, we tried to focus on counting and sorting the weekly dosages for each of the girls.  At one point, my brother looked at me in that wry way that he can, saying volumes without words.  I tried to encourage him that he would be fine and the dog would calm down.

David had lived with my mom and was essentially her faithful companion and support since my father had passed away nearly 16 years earlier.  He was a great cook, a good companion and very handy around the house, keeping up the yard and doing home maintenance, laundry and cleaning. He was a competent domestic and I had every confidence in him.  He also had the support of my other brother Dan and his wife Merry who lived just two miles away.  I told myself he would be fine and encouraged him to call whenever he needed to talk.

The next day, I left for my home in California a changed person; that time in one’s life when we transition from the role of child to the role of parent with our elders.  It was sobering and I felt like I just spent the last week traveling through a worm hole to the next definition of my life.

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Reality Sets In

So my Aunt Fern arrived and it seemed everything was as it should be. I was so happy to deliver on the promise . . . “We want to be together.” But that wasn’t the reality.

In a household of a mother with dementia, a brother plagued by alcoholism, an incessant barking dog and an aunt with dementia and out of her element . . . it was a false sense of “solved”.

My brother and mother called often to tell me of the difficulty of my aunt. I heard from my brother that my aunt was huddled in the corner of a closet of her room. My mom and brother were both calling me frequently telling me how maddening the dog was; how odd Fern was. Fern would tell me nothing was wrong. It was tormentous for me.

That is when I knew it was time to change the board. Fern couldn’t stay there. The dream of being together as sisters forever was a dream. A fantasy that would never transpire. It made my heart so sad. My mom wouldn’t make room for Fern to occupy some of her space, and Fern felt she had no place to go but the closet. I could appreciate the incessant barking annoyance of the dog, Davie, and knew at that moment how much we had put upon my little brother, David, to manage all this and his alcoholism, too.

The Sisterhood

It is time to share with you about my mother, Mary Jo, who has always been an inspiration to me.  She is a woman of mixed emotions because she could be volatile and lash out, then supportive and loving at any given time.  She represented strength to me, a woman I would want to be as I grew up and out in the world on my own.

The last of five children, Mary Jo was the baby of her family.  Fern was four years old when she was born.  Mary Jo started life in her mother’s womb being tossed by one of history’s most tragic of tornado’s in Hamilton County, Illinois in 1925.  In 1938 during the Great Depression she lost her father, who was a coal miner, to a car accident when she was 13 years old.  With just her mother and two older sisters still at home on the farm, they put their lives back together during what was surely a difficult time.  Of all her childhood stories, I gathered she was something of a solitary soul.  To this day, I would describe my mom as someone with something buried deep within her that no one in this lifetime will ever know but you can sense something there.  As a child, I sensed it in her quiet moments on the back porch growing up, smoking a last cigarette in the dark, with her back to the house and an unspoken barrier that said – “do not disturb.”

I always grew up thinking we were a well to do family.  I always had great food to eat.  I was dressed to the nines because my mom was a master seamstress.  We would take trips as a family every year for vacation to the beaches of Florida or Maryland; outings on the weekends burning off energy and enjoying the great outdoors.  I have no memory of wanting for anything.  To this day I have engrained in my mind’s eye my mother in the kitchen because she was an excellent cook.  I see her in the basement at the sewing machine making clothing with me sitting on a chair next to her relaying my entire day in a single breath while she sewed and nodded as she listened.  I see the craftsmanship of her sewing talent in my wedding dress I have safeguarded like the most precious of jewels, and in the quilts she made and won awards for in quilt shows.  She was not just domestic she was also competitive and loved sports.  I still see her on the tennis court and winning the Colorado Senior Gold in her sixties and going on to play the nationals in New York.  She golfed with a passion until her early 80s when her arthritis made the game too painful to play.  I see my mom tending her garden of spectacular flowers in the Colorado summers.  She was the most accomplished and versatile woman I had ever known.  It is important that you understand the depth and breadth of my mother, Mary Jo, as I share this Alzheimer’s journey; not because Fern’s back story is any less important but, because Alzheimer’s has robbed Mary Jo most of all.

Mom and Fern were insistent that they wanted to live out their days together.  The sisterly bond between them was inextricable.  After taking down Fern’s house in St. Louis, it was to Mary Jo’s house in Aurora, Colorado where that wish would come true.

As Fern, Davie dog and I boarded the plane in St. Louis, I couldn’t believe my luck that the dog didn’t bark a single time since I’d stuffed him in the carrier.  I anticipated his incessant barking all the way to Colorado and dreaded the experience we would have on the plane but he didn’t make a peep.  I suspect he sensed a significant change for which he couldn’t control the outcome.

On the plane ride, Fern was giddy with everyone around her.  You would never know she just closed the door on 60 years of a life well live in St. Louis; leaving behind her husband of 48 years in the military cemetery of Jefferson Barracks where someday she would return.  For the moment, she was excited for the trip and the prospect of living with her sister.

I was anxious and couldn’t shake the tension in my gut.  While things seemed fine, there was something inside me that didn’t trust the ease of it all and my mind couldn’t label what exactly was causing me to feel so stressed.  I felt maternal towards my aunt and tried to stave off the feeling of unease by planning what needed to be done next when we arrived in Denver to set her up in her new life.  As the plane touched down, I told Fern she was home now and my mom would be waiting for us when we got off the plane.  Davie was still silent and Fern suddenly shifted from giddy to quiet.  That is when I knew the enormity of the transition and all she had given up was becoming a reality.  This wasn’t just a vacation trip she was taking to Colorado.

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Leaving St. Louis

Fern has always been lively, to say the least.  In St. Louis, she was always active in her church and neighborhood, knew just about everyone and they knew her.  To this day, she loves to get a rise out of you with her off-color comments, silly jokes and antics.   I love the way her eyes light up when she is “on” because she truly loves the attention.  But more importantly, she loves to laugh and that is what I love most about her.  When her mood is dark, you feel the weight of it just as intensely as you feel the lightness of her laughter when her spirits are high.

During the auction on Fern’s last day in the house, as people walked through assessing the items for which they would bid, we sat in a back bedroom and greeted people as they came through.  What was initially an odd feeling with strangers all around; ultimately, became a room full of familiar faces for Fern.  Many of the day’s bidders were people she and Joe had known through the years from the auctions and antique shows they had attended.  Then came her niece on her husband’s side who was clearly saddened about Fern’s move and came to see what she might save of her aunt and uncle for her own bank of memories.  She lingered the entire day.  Neighbors stopped by to say goodbye and size me up for my ability to take on this mission.  Eventually they would pull me aside to say how happy they were to know we were going to be taking care of her but how much they would miss the woman who had been so much a part of their lives.

As the day ended around 5:00 p.m. and the house emptied, her friends, one of nearly 60 years, stopped by to say goodbye.  They were not happy with me which was obvious by the cool way they regarded me as they came into the house.  I could hear the words they didn’t say, “We know her better than you do.”  “Where have you been all these years?”  “How could you take her away from us?”  “How do we know we can trust you?”

We all sat down on top of boxes as they looked at one another and kept remarking how they couldn’t believe Fern was leaving.  They asked if we had thought about having Fern stay in St. Louis so they could go visit her more often and to keep her in the place she had called home for more than 60 years?   I shared with them that going to live with my mom in Denver was what both Fern and my mother said they wanted.  I was simply facilitating that transition and she would be with family.  It was painful for all of them and the words were hard to come by.  So they did the best they could by saying how they would write, they would call, and they would come and visit.

As the conversation went on, Fern’s mood became agitated and she became dismissive with her friends and scoffed at all the commotion.  That is when I realized, bravado was Fern’s defense mechanism.  I could see it was a profoundly painful moment for her and she had no idea how to exit it gracefully, so she chose to do it briskly and with a quick hug goodbye like she was just going down to the grocery and would be right back.  We exchanged information so they could keep in touch and they left.  What I would soon learn was the term “sundowner syndrome”, a common Alzheimer’s phenomena, which probably had something to do with her demeanor change with her friends.

Fern and I sat there in the living room together quietly for a time before we left her beloved house and memories for the last time.  Her white Pomeranian dog, Davie, whose mission was to bark incessantly so no one could hold a conversation, was oddly quiet as I pushed him into the carrier that would be his ride to Colorado.  I was emotionally exhausted.  We drove away in silence to our hotel for the night before heading to the airport for our trip to the Denver area, where she would live with my mom and brother, just as she said she wanted to do.

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Dismantling a Life

January – February 2008

Who knows where one gets the energy to do Herculean feats?  Driven by the constraints of time due to my career and family, I went into hyper drive to create a plan for closing out Fern’s home in St. Louis and bringing her to live with my mom in Aurora, Colorado.  A point of interest about Aunt Fern is that she and her husband Joe were antique collectors…..for years.  They spent the better part of their marriage driving from one army base to another where my uncle would audit the bases for the US Government, and Fern would accompany him with their little Pomeranian dog at the time and make side trips all over the mid-west, eastern seaboard and southeastern US to auctions, antique shows and consignment shops.  Joe was especially fond of clocks.  Fern was fond of just about everything else and their house reflected this passion.

I made a trip out in January 2008 to understand what needed to get done.  As I surveyed the home I realized I didn’t know what was of value and what was just stuff.  So I enlisted the help of professional auctioneers who would categorize, price and sell the household goods.  It was a tremendous relief for me.  My goal was to get as much money as we could for Fern’s long term care and parting with some of that funding to pay the auctioneers who knew the value of the goods seemed a fair trade-off.  But there was still so much that Fern and I needed to do to get ready for the auction which we scheduled for mid-February.  The neighbor across the street had a son who was a realtor and we enlisted him to sell the property once we cleared out the house after the auction.

I returned in February to begin the task of clearing out Fern’s personal items and deciding what she would sell and what she would keep.  For a week we rummaged through cupboards, draws, boxes, and closets looking at each item and every scrap of paper.  As we sat on the floor going through things, I’d look at Fern and ask, “Keep it, sell it or pitch it?”  Initially, it was a mantra that started with, “keep it,” for just about everything.  Towards the end of the week, the common response was, “pitch it.”

We laughed, we cried, we reminisced and lamented about how a life well lived could be reduced to this.  Things well loved, refurbished and cherished sold to strangers.  Items with stories no one else would ever know reluctantly given to charity or thrown in the trash.  Scraps of paper with scrawled notes stating, “I’ve been robbed.”  “Someone is stealing from me.”  Written reminders for the benefit of Fern’s memory, telling me the story of what was happening before we were called in to help.

My heart broke for my aunt.  I cried many times that week, with her and alone, for loss of a lifetime of familiarity that would be no more.  Fern had a different road ahead of her but I reminded myself that she would have people who loved her there to help her make sense of things.

It Started With a Phone Call

Leaving work on a sunny and cool northern California day in early December 2007, I see my mom, Mary Jo, is calling so I pull over to take the call.  It’s about my 86-year old Aunt Fern who it seems has been admitted to the hospital multiple times due to frequent calls to the police about people stealing things from her house.  The social services case worker has informed my mom that we may want to come and see what’s going on.  My 82-year old mom isn’t sure what to do about that and is calling me for advice.  I’m 49 at the time.  Like every good middle child, I call in my oldest sister, Alta, and brother, Dan, using the 3-way call feature to share the news and help determine how best to proceed.  My younger brother, David, was living with my mom and did his best to keep her calm while we figure out the best approach.

My aunt never had children and was a widow of about 14 years when I got this call.  All I could think about was the fact that she was alone.  I didn’t spend much time with her as I was growing up and certainly not in my adulthood, but I had enough fond memories of her and her husband, Uncle Joe, that I always reached out to visit when I was in St. Louis for business.  That evening it was decided that my mom, Alta and Dan would all take a trip out to “visit” Fern in St. Louis.  I waited for the report from my home in California and David held down the fort at my mom’s house in Aurora, Colorado.

The verdict wasn’t good.  They said she was routinely calling the police several times a week and the word “dementia” was brought up several times. The guidance was that she needed to be with others who could help look out for her.  A case worker talked with my mom, Alta and Dan and it quickly became clear that they needed to help put things in order.  They visited the lawyer for Power of Attorney legal documents; met my aunt’s Financial Wealth Manager to get clear about her financial situation, and then there was the bank and adding themselves to her bank accounts.  Fern willingly allowed them to navigate the system to get things in order and her sense of relief at the support they provided was clear.  She was alone and wanted to be with family.  They all agreed the best things would be for Fern to move to Colorado and live with my mom.  They both effused how they wanted to be together until the end of their days and the solution seemed logical at the time.

That was the easy part.  The hard part was what was to come.  The family debrief of the visit covered all the facts and we discussed the logistics of moving her to Colorado with my mom.  As we discussed what was needed, it became clear that I was the best one to handle the logistics and manage the move.  My sister’s husband had advanced Parkinson’s so she couldn’t leave him and she already had a full plate.  My brother Dan was a musician who couldn’t afford to be gone any longer from his work.  My brother David was helping our mom get ready to receive my aunt.  The only logical conclusion was me.  I had my husband Guido’s support, time off from work and a strong project management background.  At the end of December in 2007, I set into motion the first step of my Alzheimer’s journey with “the girls”.