I started blogging about my Mom, Amie, after she moved in with us―after the Alzheimer’s, the congestive obstructive pulmonary disease (COPD), and the schizophrenia nearly killed her living alone. I wrote close to twenty-five posts, after which, I compiled them into my book, The Dementia Chronicles. I hoped our story would help others who found themselves as a caregiver for someone they loved.
During a visit from Phoenix with my sister and grandmother, Mom fell down the last step of our stairs and broke her hip. Within two years of that visit, Mom had moved from Phoenix to Friday Harbor, Washington to live in a separate home on our island property.
Back in May 2003, on our wedding day, Bob had to assist my Mom to walk a mere five-hundred feet from her house to our backyard where we held the ceremony. A month later, Mom was in the ER experiencing her first respiratory attack after having smoked for fifty years.
For a spell, Mom kept at bay what doctors later diagnosed as COPD. In 2010, during another visit to the ER, x-rays showed scarring within and around her bronchial tubes, invading her lungs. Mom declined steadily after that with cognition red flags frequently appearing.
By 2013, she complained of electricians stealing her checks, hackers breaking into her old college records and stealing her social security number―two of the many stand-out issues she insisted were true. By September 2014, she could no longer drive so we disabled the car engine and lied to her, telling her the car was broken and that I would drive her anywhere she wanted to go.
Mom was furious. Her anger became exacerbated, exhibited by bouts of paranoia and more detailed hallucinations. As she grew physically weaker, we knew we had to move her into our home. So, in November 2014 we set out to revamp our garage into a studio apartment. It turned out beautifully―complete with an enormous stone fireplace to keep her warm. It was so wonderful, my husband, Bob, threatened to move down there himself.
Mom fought against the move, but the only other choice was putting her into a memory care facility. With few choices on the island where we live, she would have gone to a facility on the mainland―a four-hour ferry ride or costly thirty-minute flight away – not viable options.
After transitioning her to the studio apartment, Mom tried to escape. I found her huddled by our front door gasping for air, holding her cane and, sitting dutifully next to her dog, Teddy, his own leash in-hand.
But, the hallucinations grew stronger.
Within a month of the move, the big hallucination occurred. She believed someone had snuck into her apartment, shimmied across the floor on his back over to her fireplace and had stuffed crumpled newspaper into the chimney flue causing smoke to billow. It was a cold October but she opened all her windows to air out the room anyway. There was no smoke. There was no man stuffing newspaper. What there were, were sounds―tinny “plunks” whenever the gas fireplace kicked on and off.
After a month of fighting the hallucinations and failing, I started Mom on anti-psychotics and anti-anxiety meds. Within a few days, the visions calmed.
When she normalized, I learned many things, like, how much Mom loved grilled cheese sandwiches and chocolate shakes. The in-home nurses told me I had earned an unofficial OTJ nursing degree.
One month later, after I finally figured out how to manage our lives with Mom’s, she died. I didn’t go out or to church for four months.
I still have moments when I hear Mom call for me―that’s how PTSD is. I remember screaming, anger flaring about anything and everything for six months after she died―fortunately, it was short-lived. But this is the thing, if I had a choice to do it again, I’d do it all over, the same way, but with more chocolate shakes and grilled cheese sandwiches for Mom.
Susan Wingate is a #1 Amazon bestselling author of over fifteen novels, many of which are award-winners. She writes across both fiction and nonfiction genres and typically sets her stories in the Pacific Northwest where she is the president of a local authors association. She writes full-time and lives in Washington State with her husband, Bob.
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I’ve found that avoidance doesn’t do me any good at all – as a matter of fact, it’s caused me great harm in the past. At 67 years of age, I’m wearing the mantel of transparency going forward.
I am thrilled that so many of us are exercising the control we can exert to prevent COVID-19 from spreading. We do so to protect ourselves and to protect others we will never meet.
What is so very troublesome, however, is that many still consider the virus as not being an important part of their day-to-day existence so they go out and about, not wearing masks, and not social distancing.
My concerted effort protects you – your lack of effort irresponsibly puts me and my loved ones in danger. You say you have a right to live as you please, even when doing so has proven to put others at risk, including yourself. There are daily news reports about those who previously criticized the virus as being nothing, then they have a personal experience with it and become instant, fervent evangelicals for wearing masks and distancing. “This stuff is real, folks.” or “My family member was hospitalized with it” or “I got it and I’ve never been sicker.” These victims became believers, but a day or two too late.
We are ALL inconvenienced by this virus but this is an inconvenience we can all live with, or we can die standing up for our decision to ignore proven guidelines that curtail it.
I will personally continue to protect myself and my loved ones which will also protect you. Would you please consider doing the same?
Starting today, July 1st, I am replacing my weekly good news posts with encouragement of a different sort – the value of truth. Being authentic to ourselves and toward others seems to be a healthy way to go about life. Truth is more uncomfortable than lying, but in the long run, it’s way easier. I hope you’ll enjoy the research I’ve done to provide you with these weekly notes.
Frontline workers, and every other person living in the age of Covid-19, find themselves stressed beyond their abilities. Wouldn’t it be great to have a break where you need not travel anywhere? Look at what this meditation company is doing for said people.
June is Alzheimer’s and Brain Awareness Month, a time to increase understanding of what dementia is and how it impacts the lives of those it touches. It’s also a great time to work to decrease the stigma and silence that too often accompanies an Alzheimer’s diagnosis.
Each June AlzAuthors hosts a book sale and giveaway to help caregivers and those concerned about dementia find knowledge, guidance, and support offered through shared wisdom and experience. AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience. I’m proud to be a part of this growing non-profit organization, and I’m excited my eBook, Requiem for the Status Quo, is a part of this sale for only 99 cents, but only for a week!
June 15th through June 22nd you can take advantage of this biannual opportunity to purchase excellent resources on the dementia diseases for free or at reduced prices. AlzAuthors offers a variety of genres, including fiction, memoir, non-fiction, and children’s and teen literature. Most are available in Kindle and ebook, and many are available in paperback and audio. I would like to encourage you to build a library of carefully vetted books to help guide and inspire you every day.
These books are written from a deep place of solidarity, vulnerability, and love. May you find one – or two, or more! – to help guide you on your own dementia journey. Click here for the sale’s discounted offerings.
Nearly 500,000 individuals are diagnosed with dementia every year. Year after year. As stunning as that figure is, it does not take into account the family members and caregivers who are subsequently affected by each diagnosis. When they are included, the numbers rise to an even more incredible level.
What this means in our society is a rapidly ballooning population of people faced with painful scenarios and the need to make vital end-of-life decisions for those who no longer can—a role for which most are largely unprepared. Sadness, confusion, guilt, anger, and physical and mental exhaustion become the norm for these families as the disease enters its final stage. The toughest decisions I ever made were about the life and death of my mother, who had lost her voice in decisions to dementia. But, I was one of the lucky ones: My 30 years as a doctor specializing in the care of older people and end-of-life care had prepared me to face these decisions. Yet, even with that advantage, I struggled. And my siblings struggled. The challenges that dementia and end-of-life decisions present can be – and usually are – overwhelming. When I looked for a resource to help my siblings, I found none. My personal experience compelled me to fuse my clinical knowledge, with everything I learned helping to care for my mother, into a book to help others. My family’s experiences guided me in what the book should include. As I reflected, I also realized the growth, hope, lessons, and transformation that occurred during living with a beautiful woman with dementia. While the sometimes-overwhelming nature of caregiving sent me to the bookstore looking for a guide, when writing the guide, I wanted to acknowledge the experience, strength, hope, and love that also accompanied the journey.
This book is laid out as a guidebook. Each chapter includes stories of families I’ve met and worked with during the last 30 years. These stories are meant to illustrate a common issue, concern or situation that occurs in late-stage dementia, and I hope that by seeing how others have met these challenges, others will see a way forward. This guidebook deals with the emotional aspects of being a surrogate decision-maker, communication with others at a challenging time of life, and the all-encompassing grief experienced in the process. Additionally, it provides information on dementia, its progression and the potential change in goals of care that occur as the disease moves from a chronic to a terminal stage. Finally, the book provides a view of the joy and fulfillment that can accompany assisting in the dignified death of someone you care for.
Anne Kenny, MD, author of Making Tough Decisions about End-of-Life Care in Dementia, published in 2018 by Johns Hopkins University Press, is a Professor of Medicine with specialty training and board certification in Geriatric Medicine, and Palliative and Hospice Care. She has been a practicing physician for over 30 years and has been recognized by her peers as a “Top Doc” in Geriatric Medicine. She has been honored with a Brookdale National Fellow and the prestigious Paul Beeson Physician Faculty Scholar awards. Dr. Kenny has worked clinically as a geriatrician in nursing homes, assisted living, rehabilitation, and clinical outpatient settings. Dr. Kenny has found joy in her work with individuals and their families managing issues related to the diagnosis of dementia. Her experience in partnering in the care of these families touched close to home when her own mother was diagnosed with dementia. Dr. Kenny joined with her mother and her brothers and sister to provide the best care for her mother during the early and middle years following her mother’s diagnosis. Her expertise, coupled with her mother’s playful spirit and her sibling’s openness, support, intelligence, and compassion, allowed for the highest functioning and independence of her mother for several years. Dr. Kenny’s expertise and experience in inpatient and outpatient Palliative and Hospice care were called on when her mother reached the final stages of living with dementia. The Kenny family worked together for their mother’s graceful exit from this planet.
In addition to her clinical practice, Dr. Kenny lectures to both healthcare professionals and the public on aging-related issues including navigating dementia, exercise, nutrition, hormone therapy, death and dying, and frailty. She is an educator of medicine and research skills. She has over 100 scientific publications and presentations focused on improving the care and functioning of older adults.
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For this week’s story, you don’t even need to click on an attached story, such as I provide each week. Instead, my good news has to do with something that happened to me.
The other day, I went on what I call my Square Block Walk (SBW). When my husband isn’t feeling like taking a walk or has just come in from working in the yard, I take off on a very fast one-mile trek. When doing so this particular time, I passed by a neighbor (he purchased my husband’s Honda Civic for his daughter a couple years ago.) This neighbor was on his riding lawn mower in his front yard; we waved at each other and I continued on. He turned off his mower and asked me, “Is your husband okay?” I stopped in the street, “My husband?” To which he responded, “Yeah, I’ve seen you walking by yourself a few times, haven’t seen your husband with you, and I was worried.”
I almost started crying. “Thank you very much for asking. He’s fine, but sometimes I take walks by myself. But it’s so kind of you to ask – you noticed something different in my routine and you showed enough interest to ask. That means the world to me.”
I hope my neighbor’s act of kindness towards me improved your day as much as it did mine!
This post is about anticipatory vs sudden death. I know that doesn’t sound like a very positive post in honor of my sixty-seventh birthday, but this subject matter weighed on my heart the other day so I decided to write about it.
The last time I saw my mother was the 3rd week of August 1994. She died one month later. Mom and Dad visited their adult children during the month of August: my brother and I in the Seattle, WA area, and my sister in Northern California. What a gift that was – the impact of that gift not fully appreciated until Mom was taken from us during her sleep on September 24, 1994 – a life-changing shock to my father who found her, an occasion for us kids to receive the worst news possible by telephone.
The last time I saw my father was October 13, 2007 at his bedside as cancer and Alzheimer’s disease leeched the life from him. When my father was diagnosed with Alzheimer’s four years earlier, we knew there was no cure; we had time to prepare for the inevitable, an inevitability accelerated by a cancer that was not operable due to my father’s frail condition resultant from the slow deterioration of his body by Alzheimer’s disease.
Which death was more difficult, the fully unexpected one, or the expected one?
There is no comparison, and by that I mean you cannot compare grief in that manner. Grief is grief and although the shock of my mother’s death was a jolt to our emotional systems, so too was the slow death that occurred for my father. The outcome was the same: someone we all loved no longer existed, but more importantly, we became painfully aware that whether a person is seventy-seven years old when they die, as was our mother, or eighty-nine years old as was my father, life is short.
The child who succumbs to an illness, the teenager killed in an automobile accident, the newly married sweethearts starting out on their journey as a couple, the sixty-something-year-old or centenarian whose days come to an end, all those lives are valuable and their ending won’t always be anticipated.
It may be trite to say live each day as though it were your last, but trite or not, that’s what each of us needs to do. I do so without being morbid about it – rather, I have gotten into the habit of living and loving fully, always respecting and honoring those with whom I come in contact, and spreading kindness and truth wherever I go. Because, as I’ve said: life is precious.
Won’t you join me?
The current worldwide crisis appears to have torn us apart instead of drawing us together. This pandemic is not a respecter of persons: people of all political leanings, beliefs, ethnicities, and locations are its victims. A virus that has taken many thousands of innocent lives is at fault and there is no way to spin that news in a positive way. It has been said that a house divided against itself cannot stand – certainly appearing in the Bible and quoted often in such a time as this. When we come across a person who falls down on the sidewalk and is bleeding, we don’t ask them what political party, religion, or belief structure they favor. If a vehicle accident occurs while we’re out on the road, we don’t poll the victims to determine whether they are of the same political leanings or beliefs as ourselves before we call 911. No, we let compassion rule our actions and we step in to meet the need.
My prayer is that we recognize our fellow-citizens’ needs and set aside our differences and judgments for the good of all. Let’s aim to lessen the massively wide and deep divisions that are threatening to permanently separate each other from each other.
Let’s be more we-minded instead of me-minded. Equal compassion in equal measure to one and all.
by Susan McCormick
Granny Can’t Remember Me, my lighthearted picture book about Alzheimer’s disease and dementia, was motivated by our family’s experience with my mother’s Alzheimer’s. My sons witnessed her agitation when she knew her memory was failing, yet we learned how to shape our conversations so they were pleasurable for all. My boys always started a visit with my mom with, “Hi, Granny, it’s me, James, or it’s me, Peter.” This set my mother up to know she was the grandmother and this was her grandchild. If not for those clear introductions, my sons would be greeted with, “Which one are you?” I wrote this book for children like mine, who need coping skills for this sometimes scary and sad all-too-common family situation.
We learned not to ask any questions, because this would make my mother anxious and worried. Before her Alzheimer’s progressed, my lawyerly mom would try to figure out why she didn’t know the answer, and she would often try to fake an answer or turn the conversation away from the question. This upset her. So, my boys would just state the facts and start a conversation. “Today is Friday and it’s root beer floats and milkshakes day. I love root beer floats and milkshakes.” Then my mom could join in with, “I love chocolate milkshakes best of all.” In the book, six-year-old Joey doesn’t ask his Granny what she ate for lunch because he knows she can’t remember.
Another trick was to have a story my boys knew my mother enjoyed, usually about Albert, our huge, slobbery Newfoundland dog. The boys could say, “Albert got stuck in the pantry and ate an entire bag of flour.” Then my mom would say, “Oh, Albert, what a dog! What a mess!” They could tell the same story over and over; my mom always loved it and couldn’t remember that she’d heard it before, which always presented an interesting conversation topic. Alternatively, they encouraged my mom to tell her favorite stories. In Granny Can’t Remember Me, Joey hears Granny’s stories again and again, how Mom cut Uncle Jim’s hair playing barbershop or when Jim got a bump on his head playing catch with rocks.
We never questioned anything my mom said. When I told her James wanted to learn to drive a manual transmission but couldn’t find a car with a stick shift, my mom brightened and said, “My car is a stick shift, he’s welcome to borrow it.” Instead of telling my mom she hadn’t driven in years and that her car was long gone, I said, “Thank you, I’ll let him know.” She beamed, knowing she was helping. In Granny Can’t Remember Me, Joey knows his grandmother’s dog was alive long before he was born, but he doesn’t tell this to Granny, he just goes along with her story.
These methods, not asking questions, going with the flow of the mind of the person with dementia, and telling favorite stories, served my boys and our family well. In the book, though Granny can’t remember Joey likes soccer and rockets and dogs, with the endearing stories of her Three Best Days, Joey knows she loves him just the same. Granny Can’t Remember Me shows a boy’s acceptance and love for his grandmother despite her unfortunate illness. I hope the story helps other families dealing with dementia as well.
Susan McCormick is an author and doctor who lives in Seattle. She also wrote The Fog Ladies, a cozy murder mystery with spunky senior sleuths set in an elegant apartment building in San Francisco. She graduated from Smith College and George Washington University Medical School, with additional medical training in San Francisco and Washington, DC. She served as a doctor for nine years in the US Army before moving to the Pacific Northwest. She is married and has two boys. Her mother and father-in-law had Alzheimer’s disease.
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Author Website: https://susanmccormickbooks.com
What’s in a name? Turns out, quite a bit. We have all been on the receiving end of name misspellings – whether our first name or our surname. Countless times since my 2000 marriage, my surname has been spelled Olsen. Fortunately, when our name appears in print, oftentimes such misprints are easy to correct and life blissfully carries on. But what about after our life has ended?
In my home-based gym, I have been exercising as of late to a Netflix series, Finding God, hosted by Morgan Freeman. What attracted me to the series was the fact that no one religion is spotlighted, rather, many beliefs are presented, and that pleases me to no end.
Today’s episode discussed the topic all of us wish we knew more about:
What happens after we leave this life; is there such a thing as eternal life?
Sorry, I don’t have the answer to that question but what I can offer is the following: our name will live on forever. Morgan Freeman went to Thebes, Egypt and received an educational tour of Ramses’ tomb in the Valley of the Kings. (There were several Ramses, this was one of them.) In this tomb, Ramses tried to preserve the memory of his life by writing on the walls and pillars with both a self-body image (a selfie) and the actual writing of his name in the language of his time. He was well aware that many would outlive him but he was also aware that no one lives forever so he’d better make his mark on history while he could.
What about our mark on history? I already know there are more than one Irene Olsons, which is why when I published my book Requiem for the Status Quo, I wrote out my full name, including my middle name, Frances. No doubt I am not the only Irene Frances Olson who ever existed but to my knowledge, I am the only one who wrote this particular novel to honor her father who died from Alzheimer’s disease; I am the only Irene Frances Olson, née Desaulniers then changed to Desonier by her parents in the hopes of others spelling it correctly; the only Irene Frances Olson who birthed Erin Maureen Li Sai Wong Green; the only woman fortunate enough to be named Irene Frances Olson because of her marriage to Jerry Olson; I am also the only Grammo to her grandson, Lucas…and so on and so forth. Who I am as Irene Frances Olson is different from every other person similarly named because who I am is a result of how I have lived my life and how I continue to live my life.
My name is very important because it is attached to the me who is trying to make a difference everywhere she goes.
No one else is me, so I choose to make sure I inspire memories in others that will carry from one generation to the next. Fortunately, I don’t have to be famous in order for that to happen. All that is necessary is that the me that is attached to my version of Irene Frances Olson is memorable in a positive way.
Pretty sure we’ve all lived long enough to realize that during difficult and widespread tragic times, the best, and the worst, in human nature surfaces. Well, this being a Good News story, I will of course spotlight the best in human nature, and here it is in this brief story…and I’m not fooling!!!!!
My mother, Patricia Constance Conroy Desonier, left my world far too early: September 24, 1994. She was an extraordinary mother, spouse, grandmother, musician, and activist.
As a member of the Honolulu Chapter of the Catholic Women’s Guild, she and other community-minded women spearheaded a ministry to benefit the homeless on the areas of Oahu most populated by those affected by the inability to maintain a roof over their heads. In this article the many charitable works of the Guild were spotlighted, including the efforts my mother and another member, Julie Braig, completed, centered in Nanakuli, Hawaii.
They created an Office of Homeless Ohana (Ohana meaning family) where individuals and family members could set up a mailing address so they could send off applications and resumes to acquire meaningful employment and/or receive mail from other loved ones, have a place to shower, receive meals, and gather as a community; playground equipment was even secured and installed so children could play and live just like those who had a home to return to each day.
My family lived 30 miles away from where this shelter existed, and my mother’s abilities were limited because of severe rheumatoid arthritis that plagued her since she was a teenager, but my mother and Julie made the trip week in and week out to help those who needed someone in their corner during a rough time in their lives. My mother taught me many things about charity and living a full life. Here are a few of her maxims:
- Don’t assume everyone lives as comfortably as you do. Life can change in an instant;
- Give of yourself in any way you can;
- When in physical pain, just remember: you can be active and hurt a bit more, or you can stay at home and do nothing and still hurt, nonetheless.
Thank you, Mom, for being such an influence on my life, my family’s life, and the lives of so many who never met you. I love you, and I miss you terribly.
We all know that as adults, we are supposed to encourage children to read – whether in the classroom or outside the classroom. But what does one do when a school’s finances aren’t enough to stock a library? Well, you do what this librarian did: you scour discount, used stores and use your own money to create one for them. Wait until you see this!
I am not a writer, I happen to be a woman, mother, spouse, sister, grandmother, aunt, and a friend who has tried her hand at writing. I wrote a novel, Requiem for the Status Quo, to honor the father for whom I provided care when he had Alzheimer’s disease – a disease that took his life on October 13, 2007. I didn’t set out to be a novelist – arguably, I’m really not a novelist at all – but I knew it was imperative that I do something important for future Alzheimer’s caregivers and to use whichever vehicle was needed to accomplish that something. For me, it was writing a book.
Then what? What else could I possibly do to magnify the impact I set out to make regarding the disease that takes everyone it settles on, and forever changes the family members associated with its victims?
What I did was join AlzAuthors, a digital and community platform that uses the art of storytelling to light the way for those impacted by Alzheimer’s disease, to advance understanding of the disease, and to lift the silence and stigma of Alzheimer’s and other dementias. As a newly published author and a survivor of dementia caregiving, I was extraordinarily impressed – and still am – with the organization founded by three daughters of Alzheimer’s who sought a place of refuge and resources for their own caregiving journeys.
Then a funny thing happened – one of those founders asked me to join the management team of five, an invitation I gladly accepted, and with the guidance of a business consultant, who just happens to be my own daughter, AlzAuthors went from being a growing community of authors to a 501(c)(3) non-profit organization.
Then something else happened: although not serious, my health took a debilitating turn that now requires me to step back from my AlzAuthors responsibilities. Only the patient knows what she can handle, and what I know is that my focus needs to be on my health, as well as on the precious family that means so very much to me. I am still an AlzAuthor and I very much support AlzAuthors’ non-profit mission, but I will do so from a slightly removed distance.
Of this I am certain, and I quote Pico Iyer when I state:
In an age of acceleration, nothing can be more exhilarating than going slow.
In an age of distraction, nothing is so luxurious as paying attention.
In an age of constant movement, nothing is so urgent as sitting still.
I completed another novel with a message I feel is of great importance that I will publish later this year. Currently, however, I have more important matters on which to spend my time and energy.
Now is my time for sitting still – focusing on me, and focusing on my family. That is the latest chapter I am writing for my life, hoping to get it right, once and for all.