Mom’s shoes had developed a pervasive stench. There was no other way to describe it. In hindsight, I realize it may have been related to the fact that she continuously wore the same pair of leg-support knee-highs. I was somehow deluded into thinking she washed them occasionally. Now I realize she probably did not. I could have been more proactive about washing them myself, but she always wore them, and did not want an additional pair as she felt the cost was too expensive. It would have been an excellent idea if I had bought her a second pair anyway, and helped her change them each week, and then washed the pair she had been wearing. Why, oh why, didn’t I think of that? It now seems like a no-brainer. Perhaps I was still maneuvering through various and changing forms of denial. In any case, the next best thing was a bottle of foot odor remover. I showed her how to sprinkle some of the white powder in her shoes each morning. This really helped with the odor.

One day, several weeks later, I visited her and noticed the yellow plastic bottle of Comet Cleanser I had brought to clean her sink and toilet sitting on her nightstand in her bedroom. I found this a little odd, so I asked her, “Mom, why is the Comet Cleanser on your bedroom nightstand shelf?”

She replied, “Well, I am sprinkling it in my shoes every morning, just like you told me to!”

She tried so hard to follow directions. My heart went out to her for trying. Well, at least her shoes were very clean inside, and the bottoms of her feet sparkling! I replaced the appropriate bottle of foot odor remover by her bedside, and brought the Comet Cleanser home with me. I am reminded of her every time I clean our toilets!

My mother did not take kindly to what she considered “interference” with her housekeeping. Because she had always been such an immaculate housekeeper, walking into her apartment and seeing her bathroom sink caked with grime and an ever-growing brown ring around the toilet bowl was one more reminder that her brain function was deteriorating. Whenever I thought I could carefully, yet unobtrusively, clean the sink or toilet without her noticing I seized the opportunity. However, I sensed that change loomed on the horizon.

Lessons Learned

Have more awareness than I did, and buy an extra pair of support hose! Wash the extra pair in the sink whenever you visit.

Assisted living facilities typically have a cleaning service, but Mom refused to let them come into her apartment.  Should this be the case for you, and hygiene/sanitary living conditions become an issue, consider arriving while the loved one is otherwise occupied (on a bus ride or in the dining room eating, for example), clean the grime off the sink and toilet, and change the towels and sheets while he or she is away. It is unlikely to even be noticed, but you will have the peace of mind knowing the living space is clean. Bring cleaning supplies with you when you visit and remove them when you leave.

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As time passed, an idea quietly germinated in my subconscious, leading to a growing awareness that my experience might be helpful to others walking the same road. With that realization, my diary morphed into a manuscript and I began to consider pursuing publication. With a bit of wariness, I shared the manuscript with a few close friends, who offered positive feedback and encouragement. Then something unexpected happened. I developed a severe case of reticence. How could I expose our family to the public’s scrutiny, unveiling all the foibles and missteps? How could I expose the frightful truth about Mom’s precipitous decline? Even worse, if I moved forward with publication, I risked alienating my only sibling and perhaps his family, in my honesty about his lack of involvement and emotional support. When my best friend from childhood intimated that I would be “dishonoring” my parents if I were audacious enough to seek publication, her comment completely knocked the wind out of my sails. That did it. I chastised myself for even considering unmasking our family in such a callous way. The story was simply too private and I certainly did not want to dishonor my parents’ memory in any way, shape or form.

The manuscript languished on my computer hard drive for nearly 3 years. A tiny inner voice, however, refused to leave me alone. Now and then, it spoke to me, in various iterations: This narrative might be able to offer hope to others! Or: You know you learned a lot of lessons along the way that might help others from making the same mistakes. Why won’t you share them? Or: This story has so many ideas for coping, plus you could add information from experts to make it even more useful. Or: What if you lightened another’s load, letting them know that they’re not alone on a difficult road?

Eventually, I could no longer deny that voice, so I listened. I moved forward with editing, found a publisher and shared my story. Nine long years after I began my diary to cope, my diary of hope, Somebody Stole My Iron: A Family Memoir of Dementia was born.

Let’s not keep secrets any longer. Join us during June, Alzheimer’s and Brain Awareness Month. Speak out.

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I remember being admonished as a child for acting “too inquisitive” or alternately, “too sensitive.” As an adult I’m sometimes told that, in conversations, I either give too many details or ask for too many details, depending on whether I’m telling the story or listening to one. Or worse, I confess to interrupting someone else’s story (my husband) to add more details when I don’t feel he’s imparting enough information. Okay, so I like details! Watching movies, it’s not uncommon for me to be so engrossed in the details of the room decor or the characters’ clothing in period piece dramas, that I forget to listen to the dialog. My husband might call a movie a “yawner,” while I found it completely captivating in its minutia. And yes, I can be a bit on the obsessive side when it comes to journaling, particularly when traveling. I’m driven to record the details of our travel days, which actually sometimes comes in handy when we’re trying to remember the name of a particular place or where we stayed in any given city. While other people seek entertainment on their iPad, I’m busily recording the day’s events.

I’ve long collected family memorabilia, particularly photographs. Some of these photos date back to the mid-1800s. I thoroughly enjoy studying the details in these old photos, imagining myself in that time period. My current work in progress is a fictional biography of my great-grandmother Maggie. For inspiration, I’ve immersed myself in this branch of our family’s photographs, studying every element of each photo. There’s a particular photo of the farmhouse in Michigan where Maggie grew up, with 2 men and a horse standing near the house. If only photos might speak. The best I can do is squeeze my eyes shut, wishing I might transport myself into the picture by force of will, if only to ask questions and learn more about my family that came before. Throughout my life, I’ve had an active imagination, described by some as “over active.”

It’s easy for me to empathize, and over the years, I’ve often joked I could hire out as a “crier” at funerals and weddings. Labeled “overly sensitive,” I remember my mom telling me to “toughen up” when I cried over events or situations she deemed unworthy of tears. I believe she hoped to make me “strong” and strong women do not cry. How did I acquire all these seemingly “negative” traits?

Not everyone enjoys the details as much as I do, and most people aren’t as “overly sensitive” nor are they identified by their “overactive” imagination. And, we all know what happened to the cat that was too curious. We are who we are and diversity makes the world go ‘round. Still, I experienced a truly “aha” moment recently, reading a blog about the way writers think. With genuine surprise, I realized this author had not only described me to a “T,” but that there are other people who also love detail as much as I do, and are both inquisitive and sensitive. They are called “writers.” And, as a bonus, none of these labels are considered negative. At long last, I believe I may have found my tribe.

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I opened the pedestrian door from our garage onto our patio to sounds of frantic fluttering and flapping, coming from our next-door neighbor’s yard. My first thought was “Oh, no, an injured bird.” As I walked closer to the fence dividing our yards, that’s indeed what it appeared. I saw a robin hopping about and frantically flapping his wings. However, when I looked more closely, I realized that wasn’t it at all. The robin was “imprisoned” inside a loop of chicken wire mesh.

In an attempt to keep his dog away from a section of our shared fence, my neighbor had installed a few feet of chicken wire. The wire had detached from one end and was partially curled over, forming an empty cylinder. Somehow the robin had skittered into this unintentional birdcage, and was now trying his utmost to batter the chicken wire into releasing him to freedom. It was easy to see the effort was causing the bird a great deal of stress and would ultimately exhaust him.

If only we could only redirect the bird to reverse direction and look behind him toward our shared fence, he’d see there was a wide opening in the chicken wire where he could easily hop out and escape his self-made prison. My husband retrieved a broom from the garageand, using the handle, gently attempted to coax the bird to turn around and move toward the fence. This only served to further agitate the bird, as the more my husband prodded, the more the robin flapped his wings and thrust himself forward into the wire. From the bird’s perspective, forward was the only way out. From our perspective, we could clearly see that the true way out was in the opposite direction.

Like the robin, how often are we convinced that the direction we’re going is the only path? Even if someone else comes along and implies our goal may lie in an alternate direction, it’s often difficult to shift gears and turn the other way, certain doing so would only result in a setback. After all, we can “see” our goal directly in front of us. If only there wasn’t that “roadblock” in the way! So, we batter and beat at our barrier, ending up exhausted and frustrated by our lack of progress. Why is it often so difficult to switch directions and approach our goal from a different and often unexpected pathway? Have you ever experienced one of these so-called setbacks redirecting you in a different way, which actually turned out to be a better direction?

Back to the bird…Eventually, we were successful in redirecting the robin to the other side of his self-made cage, where he easily and without fanfare hopped to freedom and flew away…directly opposite of where he’d been throwing himself against the wire.

Makes you stop and think, doesn’t it?

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Although Mom passed away 8 years ago from complications of Alzheimer’s disease, a belated appreciation of her has slowly blossomed, especially in the past couple of years. At random moments, I’ve experienced an unmistakable yearning to hug her tenderly and voice my gratitude one more time. In earlier years, I sometimes seemed to lack the ability to show my appreciation in a way that she could relate.

She was born in a time of little. As a child, farm work was the only extra-curricular activity she experienced outside of school. On the other hand, while I was growing up as the only child still at home, it was quite the opposite. Mom did everything in her power to offer me as many experiences and opportunities as possible in our small town. At various times during childhood, not only was I involved with Scouts and 4-H, but Scottish and Hawaiian dance lessons, as well as music lessons, including piano, clarinet, voice, and organ. I’m quite sure I didn’t appreciate the opportunities presented as well as I might have. In fact, it’s probable I took them for granted. Not only that, but I was terrible at practicing my dance and music lessons.

As a teen, we were often at loggerheads, as I struggled to grow up and establish my own sense of self in an ever-changing world. Sometimes, in frustration, she’d shout, “No one appreciates all that I do.” I did my teen-age best to appreciate her, but I have a hunch my actions may have fallen short. The years passed, I married and had a family of my own.

Mom was always there for my family and me. If Mom could say, “yes” to a request, she did, even when “yes” meant taking care of my 3 children for 2 weeks when my husband and I had an opportunity to travel to Europe for my husband’s business. It couldn’t have been easy to step into the role of “Mom” for 3 children when you’re in your 70’s and not at all used to the hustle and bustle of a busy family. Now that I’m a grandmother myself, I can see this more clearly.

While I told her many times over the years, “I appreciate you and all that you do,” I’m not sure my words touched her to the degree that I’d hoped. I’m not even sure I fully grasped the depth and true meaning of that word “appreciation.” Then there were my misguided attempts to demonstrate appreciation, which fell flat or actually irritated her. Attempts that she had trouble accepting. After that trip abroad, along with my verbal and written thanks, I sent her flowers in appreciation. She chastised me for “wasting” money on something that would “just die.” We were residing on different planets. I was genuinely grateful and I believed flowers were a socially acceptable way of saying thank you. At the time, I scratched my head in consternation, but I now recognize that for someone who grew up during the depression, the gesture may have appeared frivolous.

Could I find the right words today, if I were given another chance to voice the depth of my gratitude for her sacrifices and unconditional love? Is it possible I now have a richer and deeper understanding of that word “appreciation?” Would she nod at me, sensing I’d at last developed a knowingness that was lacking in my younger self? Seems I had to travel further along life’s journey for that understanding, that wisdom, which evolves from living. It may simply be quite difficult or perhaps impossible to appreciate fully from the front end of life.

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It was late afternoon when my doorbell rang. I peeked carefully out the window and there stood a clean-cut young man. I thought, “Uh oh, a magazine salesman,” but something moved me to open the front door anyway.

“Hi, My name is Mikhail.” He turned slightly to point behind him at the sidewalk steps leading up onto the walkway to our front porch. “I’ve long admired those steps and I’m wondering if it would be all right to stand on them next Saturday when I propose to my girlfriend?”

“Whaat?” That wasn’t what I’d expected him to say. Far from it! “You want to propose on the steps leading up to our walkway?” Was I hearing correctly? This was a first!

“Yes, ma’am. I’m wondering if I might propose on your steps.” He patiently repeated his request. Our unusually wide steps do have a rather unique finish, stencil-painted to resemble red brick.

The conversation continued, the details worked through and the agreement confirmed. While a photographer would be hiding beneath the drooping branches of a nearby over-sized pine tree, he’d walk by our house around dusk with his girlfriend, stop on our steps and pop the question.

Near twilight on the following Saturday, I confess that my husband and I discreetly observed the two of them standing at the top of the steps beside our lamppost. From our vantage point in the dining room, we watched as he bent down on one knee. Based on her reaction, it was clear her response was affirmative. We never learned her name and haven’t seen them again. However, the scene lingers in my mind.

I looked at those steps and saw…steps. This young man looked at my steps creatively, with imagination.

Imagination has accompanied man’s journey throughout time and when imagination meets science, innovation is kindled. Inventions occur. Discoveries are made. Cures are found. I sincerely believe that when the key that unlocks the door to a cure for dementia is uncovered, it will involve not only science, but also imagination. I imagine the dementia riddle will be solved by someone who thinks outside the box…someone who visualizes potential solutions in a different way, using cultivated ingenuity and creative thought. The world of imagination is truly unlimited. Imagine a world without dementia. Imagine…

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1. Viereck, George Sylvester (October 26, 1929). “What life means to Einstein: an interview”. The Saturday Evening Post.

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Think of what happens to infants that are left untouched–they often do not survive. All human beings need touch. That includes the elderly. Sadly, something else that often diminishes over time is the opportunity for touch. Spouses die, children and grandchildren are far away and the elderly often find themselves living a singular, mostly “untouched” life.

Both my parents had dementia. Mom had Alzheimer’s and Dad, Parkinson’s-related dementia. They lived nearby me in an assisted living facility and I clearly remember what Mom and especially, Dad, craved whenever I visited. It was touch. Dad particularly loved to be hugged and kissed. Both of them enjoyed holding hands, with me, or with each other (or in Dad’s case, innocently, with any woman who happened to sit down beside him).

The 3 of us regularly relaxed together on the green leather couch in the common room at the ALF. I usually sat quietly between them, gently holding one of their age-spotted hands, hands that seemed so delicate, the skin paper-thin. I daydreamed as we sat and I watched them, wondering what they might be thinking, or, if they were thinking. Perhaps they were daydreaming too. They often stared off into space, sometimes closing their eyes and drifting off. Rarely did either of them speak. We simply soaked up the tranquility and calm delivered by oxytocin, the “love” hormone that’s released from our brains through touch. Touching also reduces cortisol, the stress hormone. No wonder I left the facility on those days feeling more relaxed! Though I didn’t realize at the time just how important touch was, I did have a sense it was somehow therapeutic for us all.

I also vividly recall the last several weeks of Mom’s life. I remember sitting close beside her, sometimes singing softly or sharing family news, but our most comforting connection was touch. Her body, so shrunken and frail, appeared weightless. I felt drawn to gently caress her skin, which had taken on a nearly translucent appearance. My fingers tenderly caressed her back, arms, neck and face, creating an intimacy that merely sitting next to her talking/singing did not.

If you have elders in your life, please consider the importance and impact of your gentle touch.

Some suggestions to increase opportunities for touch:

1. Receiving (or giving—it works both ways!) regular massages.
2. Therapy Pets…you know how good it feels to pet your dog? That petting action increases the oxytocin level in both pet and human.
3. Self-massage, such as gently rubbing our skin in the shower, can be therapeutic. It stimulates the vagus nerve, increasing our serotonin levels, which is considered our body’s “natural antidepressant.”
4. Take a dance class or simply turn on the music and dance!

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*AARP The Magazine: December 2015/January 2016 “The Power of Touch,” pg. 41

An encounter while visiting my daughter and her family gave me my first-ever opportunity to personally experience age-related redundancy. Never before have I felt so beside the point.

One afternoon,  we walked to a nearby park. Her family had lived in the area for only a few weeks, so there were lots of new people to meet. One of those new neighbors and her children were at the park too, and we began a conversation. First came the introductions. That past, the neighbor looked directly at my daughter and said, “So, how long will your mother be here?” as I stood right beside her, suddenly feeling like chopped liver. It jolted me. Hadn’t I read about this…the marginalization of the elderly? Wow. Was I now an “elderly?” This alone was tough to swallow, without suddenly also feeling I’d become invisible. My daughter answered the woman’s question, while I was left speechless and staring. Quickly searching my own memory, I wondered if I’d ever treated someone this way. It was with a sense of remorse I realized that I was, indeed, guilty. As caregiver to my parents, how many times had I disrespected them, talking over their heads with health care providers or caregivers, treating Mom and Dad as if they were superfluous? How unthinkingly easy it had been!

I watched it happen again a couple of weeks ago at a doctor’s office. This time it was someone else. As I waited for my turn to be called back, a nurse returned an elderly woman patient, who was pushing a walker, to the waiting room. She carefully helped the lady across the room to where her caregiver, perhaps a middle-aged daughter, sat. In a chirpy voice, the nurse began talking to the caregiver over this elderly woman, as if she wasn’t there. Of course, maybe this woman had dementia or any number of health concerns, but still…couldn’t the nurse have somehow included her in the conversation? I had this intense urge to ask this nurse to listen to herself and stop patronizing her patient, but my social skills are well enough developed that I refrained. This is a second example of what can happen in a social setting to the elderly (and not-so-elderly) and, I must say, it does not sit well with me. At that moment, I offered a challenge to myself, which I’ll also offer to you. Let us become more cognizant in our interactions with people, so that we are not, unthinkingly, either marginalizing or patronizing them in conversation. Let us respect our elders as living, breathing people and treat them accordingly.

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Sadly, many of us will face the deconstructing of our parents’ household somewhere along life’s journey. Knowing first-hand the stress involved in this difficult endeavor, it’s not uncommon to become an automated machine with “donate, trash, sell, or giveaway” the words of the day. Dismantling a home of many years can become a chore to endure and rarely do we utter the word “keep.” In sorting through my mother’s belongings after she passed away, I chose to keep several of her decorative teacups, a ceramic cat, a ’60’s “lady” vase, a few knickknacks and even her spurs. While in no way diminishing the sentimental value of these items, I’ve come to realize they simply can’t offer the same intrinsic experience as an article of clothing. No way can I cuddle with a spur! Saving an item of Mom’s clothing was the furthest thing from my mind during those disquieting days. I was all about tidying up and moving stuff out. It has taken time and distance for me to recognize what I will call the “power of softness” and what it would have meant to me to have one of my mom’s old sweaters or even her bathrobe.

As a daughter, if you find yourself in the position of sorting through parents’ belongings, may I suggest stopping long enough to save something soft? Fold it up and tuck it away. Grieving happens in stages. It comes and goes. You may not even think about or touch this precious garment again for quite a while. If, however, somewhere down the road, like me, you experience this longing for your loved one, that “softness” might become a cherished treasure, more special than you ever imagined.

I miss you, Mom.

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For many of us, it’s customarily the season we draw family close, spending time together, making new memories. Each family has their own unique traditions, which bind them together into their clan or tribe. As part of our heritage, these rituals are often passed down from generation to generation.

This week, I’ve been daydreaming about my own birth family’s traditions, in an attempt to awaken new memories from my childhood. Both my parents are gone now, so memories are all I have left. As there are few surviving Christmas pictures from that time, I’ve been searching through the cobwebs in my brain for memories, in an attempt to bring Mom and Dad closer to me and keep their memory alive, if only in my own mind.

Our rituals were in most ways traditional. But, what made this time of year special for me is that decorating was one of the only times during the year I remember Dad actively participating in our home life.

The Christmas tree arrived home in Dad’s old 1949 Ford delivery truck, typically a sparse Douglas fir tree. Dad was in charge of stringing the lights, although with Mom as the overseer, that may not be altogether true. I still remember my tree favorites: the bubble lights, which when warm, displayed bubbling colored water in a tube supported by a candelabra base. After the tree decorations were hung, it was time for the tinsel. Dad literally spent hours hanging those silvery strands, one at a time. I thought it would be much easier to simply throw small globs of the tinsel at the tree. After taking matters into my own hands and trying out my theory, I quickly learned “why not.” Appropriately reprimanded, I was then delegated to the position of watching.

The silver cardboard banner with letters cut out announcing Merry Christmas was hung across the fireplace mantel, just above my stocking, the hand-knitted one, made by my aunt. All these many years later, I still have the red, white and green stocking, the white yarn, yellowed with age. Two of the only other remnants of that time that I bring out each year to set on my dining room table are two ceramic angel candleholders…I’ve no idea what happened to all the ornaments and other decorations. Some of my lost memories of those times were once tangible, not solely in my mind. 

I remember the first year in our small town’s history that stores along our short Main Street remained open until 8 pm the Friday evening before Christmas week. Even though it was bitterly cold, the snow piled deep, everyone came out to experience this novelty. While Christmas music rang out from a loudspeaker, we shoppers strolled along the street, peering into stores with golden auras, bidding us enter into their warmth and light. I have vivid memories of gazing up into the clear night sky and noticing all the stars. It seemed so amazing and progressive that we were allowed to shop at night.

Dutifully each year when I was little, I wrote my letter to Santa, and then heard it read aloud by “Santa,” along with other children’s letters, over the local radio station’s airwaves, in the weeks before Christmas. When at last Christmas Eve arrived, our little family attended the candlelight service at church, before going home to open our presents. After all the surprises were unwrapped and before going to bed, I set out the milk and cookies for Santa. Later, lying awake in my bed, I was much too nervous and excited to sleep. What if he delivered the wrong present or worse, no present? What if he got stuck coming down our fireplace? It seemed much too narrow for that fat, jolly man. Eventually I fell asleep and before I knew it, Christmas morning had arrived. I tiptoed out of my bedroom into the hallway, but was too anxious to peek around the corner into our living room to see what Santa had left under the tree. It never failed…each and every year when I was little, Mom had to coax me into the living room. While I never remember being disappointed, I do remember my trepidation and fear of the unknown, standing there alone in our hallway, afraid to look.

Christmas afternoon, as I played with my new toys and inhaled the delicious aromas emanating from our kitchen, all our nearby relatives began to arrive for the big turkey dinner, prepared by my stressed-out mom. Only in retrospect do I realize we opened presents on Christmas Eve so she had enough time to prepare for the crowd on Christmas Day. I contemplate how hard she worked to prepare everything and conclude that’s why she was often grouchy. Of course, at the time, I had no clue or appreciation of all that she did. The meal was served mid-afternoon, with grown-ups at one table, the kids at another. Most can relate to the post-dinner stupor we all felt after having eaten too much!

Every year, there are fewer people from that time still with us, reminding me that time chugs along, eventually leaving all of us behind, memories cast out the train window, lost along the track, dissolving into the past. I’ve realized that memories of relatives preceding my parents have now all been left on that track. There’s no one left to tell the stories. Our stories make us human, and connect us with our past. My parents lost their memories along those tracks while they were still alive, slowly but steadily, as the tentacles of dementia squeezed and pinched off all they held dear.

Now is the time to tell your stories! Write them! Speak them! This season of time when families are together is an ideal time and place for sharing memories. How I wish I knew the stories of my family that came before. As I work on a narrative about my great-grandmother’s life, I know little beyond a few stories and the legal documents, which have survived time. How grateful I’d be to have had the opportunity to sit down with her and listen to her stories.

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