Having completed my second novel, currently titled BRIDGED BY BETRAYAL, I packed up all the research I used for my first novel, REQUIEM FOR THE STATUS QUO.
REQUIEM spotlights a family that struggles with the tangible and emotional elements inherent when battling a disease that is always fatal; a disease that gives you daily – if not hourly – reminders of its devastating effects.
I could not write about the fictional family’s journey without incorporating some of my own stories from my years as Dad’s caregiver. I also included other people’s stories as told to me through my work as an Alzheimer’s caregiver support group facilitator, and as a Washington State certified Long-Term Care Ombudsman. (Names and facts altered to protect those directly involved.)
The research materials I packed away this past weekend consisted primarily of the caregiving journals I kept while being my father’s primary long-distance caregiver while he endured Alzheimer’s disease.
That research also included reams of paper I organized into multi-tabbed folders containing the various doctor’s reports and findings from the seven years of dad’s disease journey.
I was not prepared for the emotion with which I was blanketed when I pulled out the large waterproof chest that had resided in my writing space the past three years. Placing my research in the chest, shutting it, and returning it to its original under-the-stairs location was extremely difficult for me.
In a certain sense, I felt I had betrayed Dad because I wasn’t just packing up some paper, I was putting away the physical evidence of his seven year battle of brain function loss. Read the rest of this entry »
In this particular instance, the thought of being a human guinea pig feels very, very comforting. Being able to help find a cure for Alzheimer’s that goes beyond monetary contributions sets up a legacy for many as a result of Ms. Hedreen’s extraordinary efforts. Ann Hedreen’s book is available on Amazon and at most retailers.
by Ann Hedreen
Here are two of the many things that scare me: having to change a tire all by myself (because I’ve never done it) and camping in bear country (because I have). Here are two of the few things that don’t scare me: taking pop quizzes and getting poked with needles. These slim categories of fearlessness make me a natural volunteer for Alzheimer’s research.
My mother grew up in Montana and nothing much scared her. She not only changed tires, she put chains on tires by herself, tying them together with shoelaces if they didn’t fit right, lying under the car in a snow storm. As for camping, after a twenty-year hiatus, she decided to try it again—solo, with four children in tow. We didn’t see any bears. The worst thing that happened was that we forgot spoons for our cereal. The best thing was being with Mom…
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The attached article from the Kindness Blog immediately caught my attention. Please take the time to click on the above link to discover nine easy ways to help an elder in your community. Whether that person is a family member, or a perfect stranger, the basic truth remains the same. As an advocate for the elderly I can’t help but encourage all of us to practice respect for those older than ourselves. Read the rest of this entry »
Humbled, grateful, overjoyed! Not just because I was nominated for the Very Inspiring Blogger Award, but also because I’ve inspired someone, hopefully many someones. Talking to a wall is not a very gratifying experience; if my blog is merely an electronic version of that, I will have not reached my objective: to help, encourage, and lighten your load while on this aging journey. Thank you Kay for the nomination!
Kay Bransford of Dealing with Dementia nominated me for this award. If any of you readers have yet to follow Kay’s blog you need to get to it. I will nominate several bloggers for the same award, following the Rules provided below:
- Thank the amazing person who nominated you and provide a link to their website;
- List the rules and display the award;
- Share seven facts about yourself;
- Nominate 15 other blogs and comment on their posts to let them know they’ve been nominated. I failed at listing 15, not because the blogs I follow aren’t worthy, but because my blog-following count is a limited one;
- Proudly display the award logo on your blog and follow the blogger who nominated you.
Seven facts about myself:
1. I’m not ashamed to say that I’m a Baby Boomer and have been for awhile. Turning sixty was easy, however it got a wee bit more difficult at sixty-one …
2. I was born in Pasadena, California and have lived a great length of time in Los Angeles, California; Honolulu, Hawaii; Anchorage, Alaska, and the greater Seattle area of Washington State – my current and final home.
3. My favorite people – other than my loved ones – are anyone older than me – preferably senior citizens who’ve claimed that title for quite some time. This third fact about me directed most of my worthwhile adult career and volunteer pursuits: senior housing industry manager, Alzheimer’s Association caregiver support group facilitator, and Certified Long-Term Care (LTC) Ombudsman for the State of Washington.
4. I have posted over 480 articles on my blog since starting it in 2011.
5. I am currently writing a novel that focuses on the caregiving challenges faced by those who are the primary caregiver for a loved one. Through real-life stories, the reader will learn more about the disease and its effect on everyone it touches. My hope is that by putting a face on this disease – showing what it looks like in everyday life – more interest will be generated to prevent, treat, and cure Alzheimer’s disease, a disease that is always fatal, and for which all of us are at risk.
6. I have three daughters (one of my own and two of my husband’s) and two sons-in-law (one who married my own daughter and one who married my husband’s youngest.)
7. My family tree: I have two siblings, an older brother and sister. My father died from Alzheimer’s complications in October 2007 at the age of 89; my sister-in-law died of the disease in the summer of 2012 a few months before her 70th birthday9.
And that’s why I do what I do.
Nominees for Very Inspiring Blogger Award:
Mary Riesche Studios, Vacaville, California. This artist has drawn and painted since she could hold a pencil. She has tirelessly pursued her craft through every chapter of her life. She raised four children while her husband was in the military – living numerous places in Europe and the U.S. as a result – and that never stopped her from painting. When her four children were out of the house, she and her husband adopted a teenager from Russia, bringing the number of children to five. She’s a trooper, to say the least. It took her a while to have an empty nest. I hope you’ll visit her site to see a representation of the type of work she produces.
Catching Up to the Disease, by blogger, Don Desonier. The subtitle for this blog is Transitions in Dementia Caregiving. Don’s wife died of early-onset Alzheimer’s at the age of 69 on July 4th, 2012. This blogger knows something about being a dedicated, committed caregiver, and on top of that, he excelled at being the very present advocate for his wife of 25 years.
Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems. The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.
Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future. But that’s not all: Theresa is a fabulous, published author. I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t. Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.
Not My Original Plan, a blog written by a woman in her thirties who is the caregiver for her mother who has dementia. This is a very inspirational blog – how fitting for this award! – and I strongly suggest you check it out and follow it ASAP.
Not Quite Old, by blogger and author, Nancy Roman. The subtitle for her blog is Gracefully Aging with Resistance. The way Nancy writes – filled with extraordinary humor, will keep you engaged and wanting more.
Let’s Talk About Family. Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF). Her blog is one that I never miss. You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly? Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog. If you are not yet following Lori’s blog, get to it!
Jill Weatherholt, Pursuing a Passion for Writing, is a site that inspires me because while working full-time, she’s still committed to writing and what she writes is well-worth reading. Thank you, Jill, for being an online inspiration to this aspiring author. Jill started the blog to create a community for other new writers and shares her publication journey – something all wet-behind-the-ears writers need to read and be encouraged by.
10 Legs in the Kitchen is a fabulous cooking blog but a whole lot more. Stacy’s anecdotes add “meat” to every posting and provide humor and insight, not just darn good recipes. I met Stacy at a writer’s workshop in Seattle.
Yellow Mum Blog, by Wendy in the United Kingdom, documents the loss of her mother to cancer, ten weeks after diagnosis. What she writes is a journal, but in many respects, it is a guidebook for the rest of us in our grief.
A Swift Current, Letting our Parents Go, Hallie Swift’s blog is one to which many will relate. Whether your parent’s departure is a gradual one – such as is the case with Hallie’s mother due to dementia – or a sudden departure by way of a fatal accident, letting go is hard to do – oftentimes more painful that we believe we can handle.
Attached is a very worthwhile read by blogger, Kathie Ritchie. The article includes her suggestions as well as those of caregiver adviser, Marie Marley. (Note: the links provided for Marie Marley appear to be broken, but Kathie includes Ms. Marley’s input within the body of her own blog article, making the content easily readable.)
Additional articles that will provide information and suggestions to non-caregivers on how they can help their neighbor, co-worker, besieged family member:
- Caregiving: Grief, Guilt, Exhaustion, and Discrimination;
- Solo Caregiving;
- Caregiving: The Ultimate Team Sport
The above will give you more than enough material to provide readers with helpful suggestions. If you don’t take the time to read the attached articles – and I sincerely hope you do – I’ll leave you with one suggestion that I hope you do follow:
If a caregiver doesn’t ask for help while on his or her caregiving journey, don’t assume they aren’t in need of your assistance. Offer specific assistance to them; don’t force them to come up with a suggestion on how you can help.
Examples: “I have some individual frozen leftover meals I’d like to bring over for your household, what’s a good time for me to drop them off?” or “I’m headed to the grocery store, what can I pick up for you?” or “It may sound crazy, but I enjoy working in the yard. I’ve completed my Spring yard cleanup, I’d like to come over and help you with yours.”
Like Nike says, “Just do it!”
A May 15, 2014 New York Times article, Alzheimer’s, a Neglected Epidemic by Ginia Bellafante, provides a keen look at a fatal disease that many still assume is one that only other people get. Maybe my coworker a few cubicles away from me or the neighbors down the street will have to deal with some sort of dementia, but not our household – right? You wish. Alzheimer’s is a world-wide epidemic and it’s knocking on your front door.
In 2010, Alzheimer’s was the underlying cause in 500,000 deaths in the United States.
Let’s look at another epidemic with horrific fatality totals. Remember the AIDS crisis? As of the year 2010, in thirty years’ time, AIDS was responsible for 636,000 deaths in the U.S. And yet Alzheimer’s – a very unpopular disease that is erroneously characterized as just an old person’s disease – racked up almost that many deaths in just one year.
Alzheimer’s isn’t just for geezers any more.
That’s the title of one of the chapters in my manuscript – a work of fiction that centers on the lives – patients and their family caregivers – affected by Alzheimer’s or other dementia. A couple of my characters are in their 80s but there are three characters ranging in age from early 40s to mid 60s whose disease journey began when they were no longer considered young – but definitely not considered old.
What will it take to push people out of denial and into activism?
In the New York Times article linked above, AIDS activist, Peter Staley, is quoted as saying, “The hidden blessing of H.I.V was that it hit a community, my community, a community of mostly gay men. We had a base of organizing that came out of Stonewall.” [1969 demonstrations by members of the gay community in response to a police raid at Stonewall Inn, in Greenwich Village.] And then he goes on to say, “Alzheimer’s hits old people. There is no real organized community beyond AARP.”
I’m not happy with Mr. Staley’s characterization of Alzheimer’s as an old person’s disease because it perpetuates a myth that is simply not entirely true. But I fully back his advice to all of us:
How does a large, affected community get the country to care? It means playing a strong inside game: These family members need to organize effectively; they need to find their allies in Congress; they need to show up with sick people in front of key members of health communities.
You? Are you doing your part to shine a spotlight on the hideousness of this fatal disease? At the very least, have you made a monetary donation to the Alzheimer’s Association in your country – a donation from which you will personally benefit? United Kingdom; Alzheimer’s Prevention; Alzheimer’s Society of Canada; Fight Dementia – Australia – to list a few.