Kathy Flora is a Nationally Certified Career Counselor and Master Career Coach. She began this work at Purdue University in College Placement. Through successive job changes, she’s worked as a consultant, a business executive, organization development and job search trainer, an elected State Representative in New Hampshire, an HR representative at the Congressional Research Service of the Library of Congress, and finally as a leadership program manager in an Intelligence Community agency in the federal service in Washington D. C. and Tampa, Florida.

Her life’s passion has been helping others find theirs. She has been a Hospice volunteer, is a leadership and HR blogger for A. J. O’Connor Associates, a volunteer career coach and speaker for CancerandCareers.org, and she delights in spending time helping out at Selah Vie, the local thrift store of Selah Freedom, a national not-for profit organization that fights Human Trafficking on the Suncoast and across the country.

She is a mom, a grandma, a daughter, a sister, a friend and Jim’s loving wife, a political junkie, public speaker, novice hiker, and an avid cyclist. She and Jim live in Bradenton, FL, with an inspiring view of the sunsets over the marsh along the Manatee River in a neighborhood with plenty of walking trails and biking paths. Those paths are where she finds her bliss nearly every morning before starting the rest of her day.

This is her first book, and it was a surprise even to her since she sat down to write on an entirely different topic. But as you may have noticed, God had other plans.

Walking My Momma Home is a memoir of my mom and me. It’s about love, hope, uncertainty, role reversal, courage and the raw humanity in Mom’s experience of losing herself to the disease. It’s about the hard decisions, conflicts, the relationship balancing and personal soul-stretching my care-giving required. It’s our story of surprising joy and laughter, of tears and terrors, of opening hearts and deep, emotional healing.

Filled with stories, reflection, insightful questions, and invaluable resources, Walking My Momma Home helps you reflect on and process your own journey through the raw experience of fellow travelers walking dementia’s labyrinth.

 

Dementia Caregiving – A Family Affair by Kathy Flora

Posted 11-15-18

When the phone rang yesterday, I would never have imagined that the call would evolve like it did. Calling was my uncle’s niece on the other side of the family, patriarch of our sprawling family tree, the one who always cared for others without fanfare or complaint. He would pay tuition, throw a birthday party, contribute to any cause, help our unemployed family members find jobs. There is no end to the evidence of the visible love and support he and his wife, our aunt provided over the years.

Now, his niece reached out to me to enlist me in an intervention. ( I am from his beloved wife’s side of the family, a wonderful woman who died a year and a half ago, leaving him to manage on his own.) His nieces stepped into the gap that our aunt left, a gap that was growing wider and wider each month. He was now showing stark signs of dementia himself.

Suddenly there was legitimate concern about his driving, about his travel, and about his decision-making ability, about his desire to move in with a female friend, far more incapacitated than he is. Dear man, still wanted to care for others, no matter how confused he has become. Yes, as his niece conveyed, it was way past time to have “the talk.”

So, this Sunday, under the ruse of taking him and his new lady friend out to lunch, several of us

will convene at his snowbird condo on the Gulf in Florida to discuss the best way to maintain as much of his independence and decision-making capacity as possible, while securing his future care at the inevitable progression of the disease.

At least for now, he is still able to understand the reasons why he must make some decisions about his future care. Thankfully, he has indicated that he is willing to consider taking steps, “in a year or so”, to put in place the supports he will need. But, with the rapid advance of his evident decline, “a year or so” may be too late. That’s what we need to impress upon him this Sunday.

I ache for him, that loving, generous, kind and caring man, who lost the love of his life not long ago. I ache for him because he says that all he really wants is to join her in paradise. Yet, dying is not as easy as wishing it so. We don’t usually get to choose how and when we go. What he may be facing as his genetically-related disease progresses is years of decline, in which his healthy body continues to thrive, and his heart continue to beat, while his mind drifts into a world unknown.

I ache for all who knew him as the dynamic executive, the loyal friend, and the most powerful model of goodness and love I have even known. I ache, yet my husband and I will accept the privilege before us. We will sit down on Sunday, with family from the other side who also love him dearly, and we will try our best to give back to him a portion of the love he poured out on all of us throughout our years. We will have “that talk”… that toughest of talks, really, that insists that he can no longer drive, no longer make his own decisions, and cannot live alone anymore.

God bless my uncle. God bless you and I am so very sorry. We’ll be here for you, and we will walk with you, all the way home.

Have you encountered circumstances with a loved one that requires you to have “the talk?”  If so, how did you handle it?  What was the outcome? What advice would you give to others facing the same thing with their parents or other loved ones?

Posted 11-15-18

November is National Caregiver Month

If you are one of the 16 Million in the U.S. caring for a loved one with dementia, then you know that caring for someone with any form of this disease creates profound life changes.  So, too, does caregiving for loved ones with any number of other circumstances where they can no longer manage on their own.  The latest research says that close to 60 Million of us play a caregiving role in our country today.

November is a well-deserved month of recognition for the selfless role you have shouldered.

If you know someone who cares for a loved one give them a high-five, a pat on the back, a hearty thank you, or better yet, give of yourself. Give them a few hours respite, time to themselves to get a haircut, to wander through a park, to go to an exercise class, or time to just plain sit, read, and think-knowing that you have picked up the caregiving ball, if only for a brief time.

I recently returned from a second month spending nearly half time at my sister and brother-in law’s home in the Midwest where we filled our days and through the nights juggling the compulsive new Lewy Body Dementia-driven behaviors of my dear 93-year-old Mom.

I used to care for Mom here in Florida, until we evacuated our hometown during Hurricane Irma. But for a year now, she has lived in a memory care facility a few miles from where my oldest sister and her family reside. When Mom fell in September, cracking her pelvis in two places, the benefits of Mom living close to my sister, who is a nurse were clearly obvious.

My sister, with some assistance from the rest of us siblings, navigated Mom through two hospital stays and weeks in a rehab facility, then two weeks in my sister’s home.

( I know, Mom looks good for a 93 year old who just went through all that… doesn’t she!)

Finally, after some harrowing weeks, Mom’s situation stabilized, and we were able to move her back to her memory care apartment where, thankfully, the staff was far more equipped to handle Mom’s newly developed idiosyncrasies than we were. (She began to wander compulsively from room to room, from couch, to bed, to couch,  and back again, over and over and over every 2 – 3 minutes.)

Those two week stints in Indiana reminded me how important it is for siblings and other relatives to recognize the sacrifices that caregivers make to ensure the well-being of their loved ones.  And they reminded me how important the little things are.

  • Grocery shopping and cooking a meal for the family,
  • Taking a night shift sleeping on a cot in your loved one’s room to quell night terrors,
  • Preparing your loved one’s lunch
  • Helping with your loved one’s shower

Small gestures can give the primary caregiver a vital breather, allowing them to take time for a little self-care, something essential to set each day on a positive note. Caring for one with dementia-based delusions is definitely not a one person job.

What have you found is most helpful to caregivers you know, or to you as you care for others in your life? Let’s share our strategies of support so that we don’t have to walk alone.

Kathy

Finding Light in Our Second Life

About Kathy Flora

Kathy Flora is a Nationally Certified Career Counselor and Master Career Coach. She began this work at Purdue University in College Placement. Through successive job changes, she’s worked as a consultant, a business executive, organization development and job search trainer, an elected State Representative in New Hampshire, an HR representative at the Congressional Research Service of the Library of Congress, and finally as a leadership program manager in an Intelligence Community agency in the federal service in Washington D. C. and Tampa, Florida.

Blog Post (10-13-18)

If you’re anything like me, you thought you had a plan for the retirement years, what I call my Second Life. I don’t mean a financial plan. No, that part is easy – or at least the TV commercials try to make us think.  No,  I mean the day-to-day stuff that makes life worth living – like hobbies, travel to unexplored places, new or renewed friendships, and family relationships, serving somehow in the community, continuing to make a difference in the world. All these are part of the mosaic that makes up a satisfying life of purpose. And that’s the gist of it, isn’t it?  We all want to create a life of purpose, especially after the intensity and mission-driven focus of our working years have waned.

That’s what I mean when I say, Finding Light for Our Second Life. Shining a light on the many areas of our lives that beckon us to do some exploration, some adjustment, some renewal, and even some major overhauls once we are faced with those mornings where a commute to the office or the worksite no longer press upon us. What are we going to do to find or create light in this, Our Second Life?

For each of us, the light will shine with it’s own unique spectrum – streaming out, drawing you forward into areas that you may have longed for since you were a kid, or peeking through clouds of challenge that may threaten to block out the light unless you shift your perspective a bit to see the glory in the struggle to renew.

I have to confess, I have been a career counselor and life transitions coach for a long time… a really long time and finding and holding on to the light I am seeking- figuring out who I am in retirement – has been one of the most challenging life transitions I have faced so far. Sometimes I feel like a kid of 17, trying to figure out who I will be now that I am no longer who I was at work – only this kid has lots of life lessons stored up. Some of those lessons guide me now, and some hold me back from expressing the self that I know is eager to show herself.

In this column, I hope to share some of what I have learned, some of what others have taught me, and some of the ideas that you may share with the rest of us. Let’s use this space to stretch our thinking, so that each of us may find just the right light to shine in this, Our Second Life. Come on along… Let’s figure it out together.

What are the most challenging issues you have faced in finding your own light in retirement?  (Scroll down to the comments section to share your thoughts).

What did I do when I first retired, when I badged out of the Federal Service for the last time and drove my hour-long commuting route no more? What did I do?  I went nuts… I said YES to everything. I signed up for classes, for volunteer slots, interviewed for possible new jobs in areas I thought I would love, took on babysitting commitments, moved my 90+-year-old mom into an assisted living facility nearby so that I could care for her. I planned trips with my husband to see our out of town kids, and adventures with my sisters that challenged us physically and mentally, and I even accepted an initiation into a philanthropic sorority, hoping to have a new vehicle through which I could make a difference. Oh, I  was working hard not to become invisible now that my work-related purpose was gone. I could do it all, right?  After all, that had been the frantic pace I kept while working. What would stop me from keeping that pace now?

Nothing really would stop me, except the nagging suspicion that I was working overtime to fill the void that was left when my work identity no longer served me. If I kept on filling that hole with busy, so-called important activities, how would I ever know what elements of my new life adventure would allow my own inner light to shine? How would I know what other untried adventures and exciting challenges were more closely aligned with my own spirit if I kept filling my time with everyone else’s expectations for me and my time?

I needed time to pause, to do some reflecting, and rethink my daily plans. I needed a new routine, and I needed to give myself space and time before I found just the right light that would illuminate my spirit and enabling me to re-engage more deliberately and purposefully.  And so, I said no to many of the activities I had taken on. I didn’t fault myself for this false start – testing out new things felt like a good way to choose what fit. But over time, I backed out of all but those that really resonated with me and my new identity.

It felt a bit like walking in the wilderness at first.  But soon I found a new daily pattern that made sense to me. I rose early to ride my bike or work out in the gym, I spent time in reading and studying, I allowed myself to write from the heart, and I sought and nurtured relationships with a diverse group of friends, some friendships familiar and some newly minted. And, I carved out time for meditation, prayer, grandkids, my husband of 42 years and our family. The rest would have to wait.

And so, I challenge you today. What have you filled your life with that nurtures your spirit and lights up your soul? What are you still doing that just needs to be jettisoned because it is blocking the light from shining in your Second Life?

Coach Kathy…Finding Light in Our Second Life (635 words)

In my first post, I mentioned that I had quite a fits-and-starts few months when I retired. I could not quite get my equilibrium back when I didn’t have to wake up at 4:00 AM to drive from my home to Tampa each day and focus non-stop on the tasks of the mission at hand at work. (Truthfully, I think I may have just been burned out.)

But, I also distinctly remember my husband, Jim, saying, “Kathy, I’m not going to retire as you did. Cold Turkey is not for me. I’m going to slope out so that I have time to figure out retirement before I have to completely let go of work.” I also remember thinking to myself, “Yeah, right! You try it and see if it really is as easy as you think it will be.” I kept my defiant tone to myself, but I waited to see what his adjustment really brought to light.

Well, just as I suspected, his slope out went extremely well while it lasted. He worked first 3 days per week, then two, but then the workload exceeded the time allotted so he increased his commitments again. Finally, when the time for the slope-out ended, and he reached his final retirement date, he, too, felt a bit adrift. I am not surprised. Although women like me have been deeply involved in our work identities for decades, men’s work identities are often even more closely tied to their place in the world. At risk of violating some unwritten rule of gender decorum, I believe that most men of retirement age have been conditioned to see themselves far more in relation to their work than women of a certain age (my certain age) have been.

Jim, too, had to recreate routines, test new activities, try on new roles, then say No to those that just didn’t fit or turned out to be something other than what he had hoped. He had to assess his values, re-calibrate his fitness routine (non-existent before he retired.)into a daily discipline, and he had to learn to reach out and make friends. Men friends… friends he found exclusively at work prior to retirement.

Jim’s been retired for a little over a year now and he is still figuring it out. But, he has taken on and dropped one volunteer role, added a board membership in a not-for-profit with a mission he really believes in, and has dropped 25 pounds and quit smoking… something the Doc insisted on, and he focuses on daily with more relish that I can muster for my own fitness routine. (Darn competitive, that guy!) And, he seems to make friends everywhere he goes, though none close enough to call on in an emergency yet – but some of those relationships will deepen over time.

Still, he is a work in progress, as am I.  I may drive him nuts because I sometimes commit us to couple things without asking, or volunteer to take the grandkids for an overnight without telling him. He drives me nuts sometimes because he has insisted on taking over the kitchen and the grocery shopping to ensure he gets just the right veggies and cereal he loves. (He can have the kitchen… just give me back my grocery store trips.)And, each night he insists on comparing the number of steps we walked on our fitness trackers. (I leave mine off sometimes, just to be ornery.)

But, we are figuring it out. Sometimes together, and sometimes not. Finding the balance of closeness and independence, of commitment to causes, or to projects, or just to taking care of ourselves in new ways, we didn’t have time for when work took up all our thought and energy.  Yep! We are finding rays of light all over the place these days – Light for Our Second Life.

How about the guys in the room? What has been your own experience as you face this new season of your life after work?

Coach Kathy…Finding Light for Our Second Life

Light in Our Second Life does not always shine where we expect it, nor land without casting shadows that we are compelled to explore. That’s the truth – for sure. I left work in the winter of 2015 and very quickly found myself thrust into a role I never planned nor wanted at first – Caregiver to my mom. What transpired over the next three years took me and my family on a journey through a labyrinth of confusion and fear, of hilarity and warmth, of personal growth and spiritual stretching like nothing I had expected or had ever experienced before. My mom was diagnosed with dementia, and nothing has been the same since.

Walking through dementia’s labyrinth has changed me profoundly…. Perhaps I can better explain by sharing the Author’s note from my new book, Walking My Momma Home- Finding Love, Grace, and Acceptance through the Labyrinth of Dementia. Take a look.

” This is my journey…with my soul laid bare.

While caring for my precious mom through the labyrinth of dementia, my heart has been torn open, all the junk swept out, leaving me with a life-changing affirmation.

Our lives are precious beyond anything we may ever know. Our spirits are deeper, wider and more connected than we recognize in the rush to figure out our day-to-day existence. For me, taking care of my mom slowed me down enough to see through the whirlwind of a never-ending To-Do list, showing me what really mattered.

It opened a veil that had obscured my path toward heaven, and what poured out, what washed over me and into my heart was grace. Grace stretched me. It challenged me. It stripped me of things that no longer mattered. It drew me inward and upward on my path from daughter, to a caregiver, to soul partner, then finally to a place of acceptance and release. Yes, it was about releasing Mom to my siblings (who also love her) and to her Creator; but for me, it was also a journey of releasing my own spirit, welcoming in more trust, more hope and the certainty that all of life (even the hardest parts) has meaning, allowing me to grow into my fullest, truest self.

Because of this journey, I am different now. My soul practically sings as I write this, for without the path I walked with Mom I may never have learned these things. Without it, I may never have been filled with the love, the hope and the joy I now carry in my heart. That is the gift that Mom gave me through the privilege of caring for her.

And it’s my wish for you as you, too, embark on your caregiver’s journey.

With Love and Reverence for Your Own Caregiver’s Path,

Kathy”

I offer a small piece of this journey with you here, hoping that through sharing our story, it may touch one of you who may also be dealing with similar challenges. Know that if you are…You are Not Alone!

Walking My Momma Home is now available in Amazon Kindle eBooks and will be out in paperback and audio-book format yet this fall. If you want to know more, click the book page link below

Wishing you light for your own journey – wherever it may take you!

What are the unexpected challenges in your Second Life that are taking you places you never thought you would have to go?  What have you learned through the journey?

Feel free to scroll down and share your feelings in the “Comments” section.

About Kathy Flora

Kathy Flora is a Nationally Certified Career Counselor and Master Career Coach. She began this work at Purdue University in College Placement. Through successive job changes, she’s worked as a consultant, a business executive, organization development and job search trainer, an elected State Representative in New Hampshire, an HR representative at the Congressional Research Service of the Library of Congress, and finally as a leadership program manager in an Intelligence Community agency in the federal service in Washington D. C. and Tampa, Florida.

Her life’s passion has been helping others find theirs. She has been a Hospice volunteer, is a leadership and HR blogger for A. J. O’Connor Associates, a volunteer career coach and speaker for CancerandCareers.org, and she delights in spending time helping out at Selah Vie, the local thrift store of Selah Freedom, a national not-for profit organization that fights Human Trafficking on the Suncoast and across the country.

She is a mom, a grandma, a daughter, a sister, a friend and Jim’s loving wife, a political junkie, public speaker, novice hiker, and an avid cyclist. She and Jim live in Bradenton, FL, with an inspiring view of the sunsets over the marsh along the Manatee River in a neighborhood with plenty of walking trails and biking paths. Those paths are where she finds her bliss nearly every morning before starting the rest of her day.

This is her first book, and it was a surprise even to her since she sat down to write on an entirely different topic. But as you may have noticed, God had other plans.

PRAISE FOR WALKING MY MOMMA HOME:

“There are truly no words for how deeply this book resonated with me. There were so many days while reading it that the bravery and authenticity Kathy showed by sharing her journey helped me face the walk I’m currently on with my parents. I laughed. I cried. And then I cried some more, but I cried tears of comfort and understanding. This book is the ultimate story of the cycle of life – the journey home – that each of us is on, and it’s full of light, love, and laughter along with all the tears. Thank you, Kathy, for writing such a powerful, heartfelt book and for sharing your journey and your mom’s journey with the world. I’m forever grateful.” — D. D. Scott, International Bestselling Author

Copyright © 2018 Kathy Flora. All rights reserved.

No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording or other electronic or mechanical methods; nor may it be stored in a retrieval system, transmitted or otherwise be copied for public or private use without prior written permission of the publisher, except in the case of brief quotations embodied in reviews and certain other non-commercial uses permitted by copyright law.

The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical circumstances without the advice of a physician, either directly or indirectly. Although the events portrayed in this book are real, some names and places have been changed to honor privacy concerns.

Dedication

To my beloved mom, Marcie, to my dear husband, Jim, who is both my soul’s anchor and my sail, and to my family and friends who give me light and love and fill me with hope for our future and everyday joy.

And, to those of you who walk dementia’s labyrinth, may God grant to you the same gift of love, grace, and acceptance that He offered to me.

Dear Reader,

This is my journey…with my soul laid bare.

While caring for my precious mom through the labyrinth of dementia, my heart has been torn open, all the junk swept out, leaving me with a life-changing affirmation.

Our lives are precious beyond anything we may ever know. Our spirits are deeper, wider and more connected than we recognize in the rush to figure out our day-to-day existence. For me, taking care of my mom slowed me down enough to see through the whirlwind of never ending To-Dos, showing me what really mattered.

It opened a veil that had obscured my path toward heaven, and what poured out, what washed over me and into my heart was Grace. Grace stretched me. It challenged me. It stripped me of things that no longer mattered. It drew me inward and upward on my path from daughter, to caregiver, to soul partner, then finally to a place of acceptance and release. Yes, it was about releasing Mom to my siblings (who also love her) and to her Creator; but for me, it was also a journey of releasing my own spirit, welcoming in more trust, more hope and the certainty that all of life, even the hardest parts, has meaning, allowing me to grow into my fullest, truest self.

Because of this journey, I am different now. My soul practically sings as I write this, for without the path I walked with Mom, I may never have learned these things. Without it, I may never have been filled with the love, the hope and the joy I now carry in my heart. That is the gift that Mom gave me through the privilege of caring for her.

And it’s my wish for you as you, too, embark on your caregiver’s journey.

With Love and Reverence for Your Own Caregiver’s Path

Kathy

And so, it begins

“Kathy, do you see those pink trees? Don’t run into them. WATCH OUT! Can’t you see them? They’re in the middle of the road. WATCH OUT! Oh, look at those colorful ties. I wonder why they are floating there? Do you think Jim would like one?”

With my 90-year-old mom’s startling hallucinations, an unexpected phase of life unfolded…for both of us…

Our day had started with a joyful errand, shopping for her dress for our son’s wedding, just the two of us out on a warm, sunny June day, strolling through our local department store, eyes out for the perfect ensemble for a beach wedding at the end of the summer. It ended with:

  • visions of pink trees in the road,
  • of dogs’ heads materializing through non-existent wallpaper,
  • lines of soldiers gazing at a general who was issuing motivating orders on the eve of war
  • and a malevolent flying squirrel whooshing by her bed in the dark

These images terrorized my legally blind mom as she cowered on top of the covers in our guest room, too frightened to sleep that night.

What came next in my mom’s decent into dementia was a stunning, troubling, more than occasionally comical but ultimately humbling journey of the soul. It affected each of my family members uniquely, opening us, if reluctantly, to a world of the unknown.

For mom, it was a serious and seemingly impossible fight as she struggled mightily to grasp at and maintain her sense of control despite intermittent but ever-increasing confusion.

For me and my family, it stretched us, built up walls then broke down the barriers between us. It brought me, her primary care partner, to my knees as I encountered one unexpected and absurd development after another – doing my best to keep my own balance while coping with and caring for Mom in her new, topsy-turvy reality. Finally, it taught me, and is still teaching me, to release control, to rest, to love and to cherish small moments, as I learn, inevitably, to say goodbye.

The caregiving path is a rocky one, fraught with detours, difficult decisions and spiritual challenges. It is one that so many of us will face. It’s a path we travel that most surely is not the one we would have chosen for our loved one or for ourselves. Yet, how we choose to travel this road can open our eyes to a gentleness in life – a slower, more mindful appreciation of what matters when all else is stripped away.

I’ve discovered that I walk in parallel with Mom as her identity slowly unravels.

She is on a path facing unfathomable loss – loss of familiarity, of recognition of things present, indeed of the self that served her well for her 90+ years; yet, what she loses in her grip on reality, she is gaining in sweetness, innocence and a level of trust she could never quite grasp while wholly in control of her faculties.

The other path, mine in this case, finds me walking this mind-altering labyrinth day-by-day, hoping to grow more deeply into the higher self that God intended for me – striving to meet each new challenge with humor, grace and trust – qualities opposite my own intense, and alright, I’ll say it, anxious personality, qualities I’ve often found in short supply in my past.

Through caring for Mom, God has given me an enormous lesson in humility and an unexpected, though often resisted, opportunity to grow into someone different in this, my second stage of life. My hope is that by recounting my own stumbles and stretches, our family challenges and resolutions, and Mom’s fight for independence, clarity of mind and finally trust and rest, that you, who are on similar paths, may gain solace in the work you shoulder.

If you are caring for a loved one with dementia, you certainly are not alone. According to statistics from the Alzheimer’s Association, 1 in 10 people over the age of 65 in the U.S. are living with dementia. 70 – 80% of those (5.5 million people of all ages in the US) are afflicted with Alzheimer’s dementia, the most common form. This number is expected to double by 2050 to 13.8 million people. Add to these numbers the more than 100 other forms of dementia, including Dementia with Lewy Bodies (LBD) which we suspect is Mom’s type and the second most common form, vascular dementia from strokes, and dementia from Parkinson’s Disease, the crisis threatens to overwhelm us.

These figures are daunting. They cry out for interventions. No, they scream for a cure. And many hopeful signs for diagnosis and treatment are in the offing. But…if you are one of the many caring for someone you love who is experiencing dementia, these figures mean only one thing. You and your loved one will travel a path like none you’ve ever imagined. You are facing a walk into the complete unknown.

In this book, you won’t find medical advice for your journey. What you will find is a recounting of real life events, emotional, humorous, poignant and infuriating events that make up the last few years I spent with my mom. I offer this story from my care partner perspective and share what I know now that you may find useful.

Let’s walk together and help each other along the way.

But, I’m getting way ahead of myself. Let’s go back to the beginning…

Section One: Inklings of Things to Come

Chapter One:

Love and Loss

Dad died in the summer of 2004. It was an unexpected, quick, though not very merciful death. I went to visit him and my mom Marcie in their home in The Villages on his birthday, June 16th. He spent the morning making himself strawberry shortcake rather than a traditional birthday cake like the ones mom used to bake.

When I arrived for his birthday visit right after lunch, we enjoyed the summer time shortcake treat on the lanai. He was proud of that lanai, newly enclosed by the latest Villages’ fad – removable plexiglass windows – a shield to keep out the wash of Florida’s torrential summer rains. He was proud of their retirement home which they’d settled into just months before, and he was equally proud of his newly developed culinary skills.

As we savored the results of his emerging talent, we talked, we laughed, and he groused about the poor showing he had made on the golf course with his buddies the day before. We even touched briefly on my own recent recovery from cancer treatment and the entrepreneurial projects my husband Jim and I were planning, now that my health storm was over.

Just before I left for the two-and-a-half-hour drive back to our home in Lakewood Ranch, I secured his commitment to look over our proposal for a new business venture, promising to send it along in an e-mail before Father’s Day. Then, I climbed into my car and honked goodbye: Honk, Honk, Honk…our family shorthand…three beeps for “I love you!”

In my mind’s eye, I still see him standing in the open garage door, smiling and waving, saying, “Good Bye! Thanks for coming.”

That was Wednesday afternoon. By the following Sunday, Father’s Day evening, he was hospitalized with a diagnosis of pancreatitis. By Thursday, he was gone. He was only 79. He had been married to Mom for 52 years…dead two days before her own 79th birthday.

During those days of stark loss, I never saw my mother cry. A nurse until age 73 (When their family finances turned sour at age 67 she lied about her age on her employment application to land a hospital job), her characteristic need for control masked her pain and the threat she must have felt anticipating living alone with waning eyesight.

The only sign of uncertainty evident to Jim and me was her indecision about where to bury dad’s ashes. After his cremation, we perched his urn on the bookshelf in the living room of our rented condo for a few weeks because it scared her to keep “him” in her house. Eventually, we drove him around – the urn, I mean – wrapped in a beach towel, secured with a seat belt in a laundry basket on our back seat, while mom checked out one cemetery after another. Ultimately, she settled on one in St. Petersburg, Florida, quite a distance from her home and ours, simply because his mother and father were buried there, decades and decades before. “I don’t want him to be alone,” she said. Okay, Mom. Finally, I thought. St. Pete it is.

The Independence Illusion

Though Mom and Dad’s union was sometimes rockier than most, due to personal issues and a series of bad financial decisions that almost left them bankrupt, they seized on a fresh start in The Villages, settling into a rhythm in their retirement home including budding friendships and an unbelievable array of potential activities to choose.

Mom took advantage of their new lifestyle to take low-vision classes at the Center for Sight to help her cope with macular degeneration. In those classes, she learned to fold money a certain way, so she could identify the denomination by the folded pattern. They taught her to use a white cane when traveling so that she qualified for extra assistance at airports, and they encouraged her to purchase and use what she called her reading machine, a specialized piece of equipment that magnified the written word up to 25X – a $2,900 prized possession. They taught her to use her finger inside a coffee cup to keep her from overflowing the cup when pouring and to put Velcro-hooked dots on her washing machine and stove, so she could feel for the settings rather than guess.

She was proud of these innovations and took to the classes like the intelligent RN that she had been.

Her instructors also informed her of a Florida state law which enabled those with vision problems to ask for shopping assistance in the grocery store when picking out items from the shelves. She simply needed to declare “I’m visually impaired,” and any retail establishment would assign a helper to assist with her shopping.

This worked well, most of the time, except when she was too rushed or too reluctant to ask for help. I once found three packages of small toy rocket engines rather than AAA batteries (same size, same shape) stored with the other batteries in her refrigerator crisper drawer – a practice she adopted long ago to help batteries keep their charge longer in Florida’s humid air.

How do you even find rocket engines in a grocery store? No matter.

Looking back, the series of low-vision classes was one of the most important steps she took to secure her independence, not knowing at the time how crucial these tips for navigating the world would soon be.

But…rocket engines? Did they portend something more challenging than her loss of sight?

After dad’s death, each family member settled back into regular day-to-day rhythms, trusting that Mom, always fiercely resourceful and in charge, could figure out her own new rhythms for herself.

Events of the next years are a blur to me, fogged over in my mind by our move to Washington D.C., by Jim and I adjusting to a city lifestyle, and my own adaptation from a budding entrepreneur to a Federal employee. We left Mom in Florida to fend for herself with the help of neighbors and close friends. During this time, Jim and I weathered an occasional “Mom Crisis” causing us to make quick visits to Florida to recalibrate her finances and spending habits. “Mom, do you really need to take that cruise…give $100 to every niece and nephew at Christmas…fly to Detroit for your nursing school’s May Breakfast Reunion?”

As we arranged and rearranged her household support again and again, our trips to The Villages became more and more frequent. On one especially difficult trip, we challenged her ability to drive. Ultimately, when she failed to qualify to renew her driver’s license, we had to sell her car.

No surprise there. Despite Florida’s liberal licensing system giving even the frailest elderly driver a 10-year renewal license if he or she could pass the written test, Mom couldn’t even read the test document. Her eyesight had deteriorated so much she could no longer read magnified words on a computer screen. Her vision was 20X400 in both eyes – legally blind by anyone’s standards. Her physician declined to be cajoled into giving her a written note claiming she could see well enough to drive. So, with Jim’s expert persuasive skills and the doctor’s support, Mom reluctantly gave up her car.

She really hated getting rid of that car and the independence it represented. Our normally safety-conscious mom was unable to accept that driving her car was a danger to both her and others. This step, more than any of the traumas of widowhood, unmasked her building resentment of Dad. “Why did he leave me in this state, and where did all my money go? I worked hard for that money and look at me now.”

For months on end, every conversation centered on these two issues: Dad’s disloyalty for leaving her alone and her dwindling finances. No matter how we tried to redirect the subject, her mind cycled endlessly through the same questions and resentments…over and over…and over like an old, scratchy 45 record with the needle stuck in an endless groove, unable to move on to the next tune.

Even though it was no longer wise to maintain her free-wheeling habits, she could not seem to restrain her spending. Dad had held high-level positions in Banking for much of their later married life, so she was used to virtually limitless spending on whatever she wanted. As his life came to a close, however, he was no longer able to make good decisions, throwing them into a dire financial crisis that took many months and major help from family members to unravel. Now, money was a brand new sore spot, but she continued spending far more than her financial status warranted.

Was this negativity and obsessive thinking just another manifestation of her personality, or was it an indication of things to come?

To address the drumbeat of almost daily, negative phone calls, my older sister Lynn and I attempted to compensate for Mom’s feeling of being housebound by hiring an occasional driver for her – a cheerful, middle-aged woman, aptly named Cherry. Cherry lived in The Villages, too, and supplemented her retirement income helping the older residents of the community. We found her ad in the local weekly newspaper.

In addition to driving Mom to appointments and to the grocery or Walmart once a week, Cherry cooked with Mom. Together, they would make several meals, freezing them so Mom could thaw them in the microwave or, God forbid, on the stove. The thing was, though, Mom rarely, if ever, thawed them out. Instead, I noticed a growing stack of Tupperware containers in the garage freezer, full of untouched nutritious casseroles and meat and vegetable dishes, while Mom opted for a big bowl of chocolate ice cream to satisfy her hunger and ever-present sweet tooth.

Despite the noticeable quirks, Mom’s interactions with those of us in her family and in her circle of friends didn’t yet raise alarm bells. I saw these issues as more of an inconvenience than as patterns of behavior that should have called us all up short.

Driving Ms. Marcie

Eventually, in response to Mom’s insistence that Cherry’s 10 hours per week still left her stranded much of the time, I made a quick summertime visit back to Florida to help her map out golf cart navigation routes to the grocery, drug store and bank. That way, she could get where she wanted to go when the fancy struck without relying on someone else. She could just hop in her cart and go.

The Villages is designed for golf carts, and it wasn’t unusual to see seniors tootling up and down the cart paths in lieu of driving their cars on the roadways. If this strategy worked to help her retain her independence, Mom would be in good company.

And it was a big IF. Close your eyes and picture this:

Imagine teaching an obstinate teenager to drive in rush hour freeway traffic, in this case, though, your teenager is your 80+-year-old Mom. She’s blind (okay…she says she’s just “visually-impaired”…). And she insists she can see quite a bit and that she knows how to drive.

You’re both perched in a golf cart, careening past other cart drivers down the wide, thankfully accommodating, cart paths for which The Villages is famous. You come to a fork in the path, and your student driver accelerates, taking you straight into the grassy median. Backing up is a challenge, but with a bit of coaching, she’s able to get back on course.

But wait…what’s that ahead? It’s a tunnel under the busiest thoroughfare – an essential element to traverse if Mom is to safely arrive at any of her desired destinations. Looking around, you see several other carts strung out in a line behind you, heading to town in the same direction. Their drivers are getting impatient, bunching up on the curves and jockeying to pass each other before the obstacle ahead.

Yet, there it looms, the tunnel – a pitch black hole compared to the blazing glare of the summer sun – a terrible combination for a visually-impaired person. To Mom, it looks like driving into a pitch-black abyss.

Whoa! Dead stop!

The other carts screech to a sudden halt behind us, narrowly avoiding a rear-ender.

“I can’t see a thing in this dark, Kathy. You’ll have to take over ‘til we get through,” Mom said and abandons the driver’s seat…right in the middle of the tunnel.

We did make it safely home that afternoon. And in an obviously questionable move, I signed off that night on Mom’s plan to use the golf cart to get wherever she needed to go – not that my permission or lack thereof would have made any difference to her.

What was I thinking as I made my way back to my life in D.C.? God only knows. But the alternative of standing up to this powerhouse of a tiny woman, who always knew her own mind and let it be known in no uncertain terms that it didn’t really matter what I thought, seemed a leap way too big for me at the time.

Looking back, “denial is not just a river in Egypt”, as the old saying goes. This was the state of mind that all of us “kids” lived in during those years. Mom was doing well, right? She knew how to manage. Everything she needed was in place – or so my siblings and  Jim and I chose to believe. The truth was too overwhelming to imagine and the implications too formidable to face as each of us continued our busy lives. 

Mom’s Path

Although it is difficult for anyone else to understand where one’s thoughts go at times of grief and massive personal change, to us, her kids, Mom’s stoicism and fierce independent streak dominated the first few years after Dad died.  She built strong friendships with her neighbors, kept in touch via phone and letters with old friends from our many cross-country moves, and maintained her fashionable personal style.  Although loneliness must have been a factor, she worked hard at her relationships, regularly riding to church and out to dinner with neighborhood friends.  She could often be spotted walking the circle of the surrounding streets in the evening, gathering snippets of gossip and tossing greetings to acquaintances as she strolled by. “Heck”, I thought, “She has far more friends than I do.” From my vantage point 900 miles away, she was a master at connecting with people.

In the ensuing years after Dad died it seemed that she came into her own, forging ahead with her own plans, and making independent decisions that she might have deferred to Dad in the past.  The occasional phone call recounting a night spent in the walk-in closet in fear of one of Florida’s frequent thunder storms, or a casual mention of a burglar who broke in to a nearby home through the bathroom window were infrequent enough for us to ignore her growing sense of dread and isolation. I just chalked them up to Mom being Mom.

But, looking back, her medical records at the time showed a growing unease about her eyesight, and her physical and neurological health.  These records portray a woman seeking confirmation and answers for self-diagnosed neurological symptoms –  epilepsy, a seizure disorder, heart issues, a concussion from a fall?  Although she rarely mentioned these concerns to us, she consulted her neurologist and cardiologist frequently. She refused to stop taking anti-seizure meds prescribed 20 years before, despite her doctor’s insistence that she did not need them. And, without reporting her intent to do so to any of us, she had her neurologist conduct a test for memory, only filling us in when the results came back normal.  I can only speculate now about what she was thinking, but somehow, I think she knew what was coming… and was working her hardest to fend it off. 

Kathy’s Path

Do you know that old maxim, “Change brings Opportunity”? I certainly did. I spent my professional career as a corporate trainer, and the Chinese symbol for Change was a staple of any of the work I did with other professionals going through career transitions. Oh, those of us in the field thought it was so slick… Danger over Opportunity. We all used that symbol to talk about how one could navigate the career transitions that job loss would bring. We talked up change as if it were a river to cross, a road to traverse, simply wait for the green light and over you go. – if you have the right attitude. Yeah, right!

When it came to me and Mom, maybe it would have been easier for me to grasp the magnitude of the change we were headed for if I had taken that symbol to heart. If I had applied the wisdom behind it.  Opportunity – for personal growth and understanding, for patience, for closer observation of the patterns I saw developing, and for deeper love and respect. Danger – for the fear of the unknown, the uncharted waters of dementia, and the helpless feeling of inevitability that comes with that diagnosis.

But, no, I had absolutely no idea of what was to come. Certainly, we had no diagnosis of the onset of dementia. I had not thought of Mom as old, or feeble, or incapable. Heck, she had just beat me at a golf game on the Villages course near her home – amazing, yes, but possible, as long as I helped line her up to the hole. She was game for anything. Mom was always strong, always resourceful, always “an RN” or so she liked to tell us when she talked about the latest developments for Macular Degeneration, or in seizure disorders, something that she claimed to have after experiencing a seizure 20 year before at my nephew’s grade school graduation celebration.

No, we had no such dementia diagnosis. I had only the inkling that it would be more helpful to mom if I visited more often, if I made an effort to call more frequently, and if I helped her with her banking and personal paperwork, taxes and such, because her eyesight was a hindrance to doing these things by herself. I did not see warning signs as such. I just thought it a bit inconvenient, especially since I was reestablishing myself at work in my new job and a new location. Boy, when looking back, perhaps I was the one who was blind.


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Black Men In America.com Administrator
Black Men In America.com is a popular website with a focus on black men. Approximately 45% of our site visitors are women. According to Alexa Internet and Ranking.com, Black Men In America.com is consistently ranked as one of the Top 10 most popular web sites (online community) on the Internet in the Ethnic/African/African-American category. Although our focus is on black men, we welcome all people, points of views and perspectives. Please do not use this site to post or transmit any unlawful, threatening, abusive, libelous, defamatory, obscene, vulgar, pornographic, profane or indecent information of any kind, including without limitation any transmissions constituting or encouraging conduct that would constitute a criminal offense, give rise to civil liability or otherwise violate any local, state, national or international law. You alone are responsible for the material you post.
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