Alzheimer’s

The secret of Alzheimer’s disease

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I discovered something shocking during the weeks that followed my novel’s release:

Alzheimer’s disease is still a secret.

I know; we’ve all certainly read about it, especially when a celebrity is diagnosed with the disease. Every once and awhile there might be an Alzheimer’s Association commercial on television…that is assuming we don’t fast forward through it or walk out of the room. Another reason we’re familiar with the disease is that it is happening to so many people with whom we are acquainted – whether intimately or tangentially.

But it’s still a secret. The very definition of the word speaks to its intent: adj. not known or seen or not meant to be known or seen by others; n. something not properly understood; a mystery. from the Concise Oxford English Dictionary

In many of my promotional posts and boasts for my novel Requiem for the status quo, I’ve indicated that my book tour would probably look more like a senior center tour than what is normally the route for authors: readings and signings in major and independent bookstores. That’s the tact I took, approaching numerous senior centers in Western Washington. 25% of those I approached booked my author event on their activity calendars.  But when I approached a major senior housing community foundation to get on their speakers’ calendar, I was told the residents pushed back at the foundation’s previous efforts to enlighten and inform when they hosted those who spoke to the reality of Alzheimer’s disease and other dementia.

Damn. Read the rest of this entry »

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Support for my readers

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I’ve mentioned in previous posts that my “book tour” may look more like a senior center tour than a literary one. The reason: I want to reach those who could use a bit of what I have to offer. As my Author Bio states, I want to make a difference in the lives of others by writing novels that encourage those who just might need another cheerleader in their corner. At the bottom of each of my site’s pages is a section titled READERS CORNER. Each week I provide a new element of encouragement as my simple way of standing in my readers’ corner.

Yesterday I witnessed one small way in which someone was reached by my novel.

I had a haircut appointment with my wonderful stylist, Molly, of C.J. Salon. Molly has followed my entire publishing journey and is very familiar with the topic of my soon to be published novel, Requiem for the status quo. She finished up with her previous client and welcomed me into her chair. I did the reveal of my published novel which I had brought with me for a much anticipated Show and Tell moment. I also gave her several copies of my marketing brochure that provides a peek into the storyline and the lives of the characters. “Please hand them out to women who could possibly benefit from reading my novel.”

She grabbed one of the brochures, said, “I’ll be right back” and ran out into the parking lot to flag down her previous client. Turns out this client is fully-involved in a family member’s dementia journey and Molly felt she could benefit from reading my book. Turns out she was right. Her client was so excited, she hugged Molly and basically said, “This is what I’ve been looking for!”

That, my friends, was the highlight of my week – someone who wanted what I had to offer and just might benefit from the read. But you wanna know something else? My appointment was initially scheduled for 3 pm. The day before I found out I had a change of plans for my Friday, freeing up my morning, so I called C.J. Salon, asked if they had an earlier opening, and I grabbed it.

Molly’s client benefited from my change of plans – a change that initially was upsetting to me, but turned out to be just what was supposed to happen.

My oh my, I love how the Universe cooperates when its occupants are just going about their lives, oblivious to its whiles!

In less than two weeks, Requiem for the status quo will be released. It is currently available for preorder at Black Rose Writing; enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble and Amazon. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

Requiem for the status quo

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Allow me to reintroduce myself:

My name is Irene.  I am the author of the upcoming novel Requiem for the status quo.

Some of you know me as a family member, friend, or casual acquaintance.  Others are familiar with me as the author of this blog, a writer who has posted hundreds of articles over the past several years.  Still others know me because of my professional connections as a volunteer advocate for vulnerable adults living in long-term care (LTC) facilities, or because of my years as an Alzheimer’s Association support group facilitator.

Typist caricatureI’m here to announce that in addition to being the family member/friend/acquaintance/volunteer/co-employee of the past and present, I am also the novelist who has something to say.

“Oh my gosh Irene, I didn’t realize your book was already published!”

It’s not, but I’m actively pursuing agent representation by contacting several agents per day until I no longer need to.

“Why should people be interested in your book?”

Because I have an engaging way of writing about Alzheimer’s disease – a disease that will affect each and every one of you because until a cure or vaccine is developed to eradicate it, this disease is here to stay.  Whether a person’s diagnosis falls into the actual Alzheimer’s category, or into one of several other dementia such as: vascular, lewy body, frontal temporal, Parkinson’s, or dementia resultant from a traumatic brain injury (TBI), there’s no escaping its effect on the unpaid caregiver (that’s you and me) and the person being cared for (spouse, partner, mother, father, brother or sister).

And here’s a fact of which some of you may not be aware: Alzheimer’s is not just an older person’s disease; an increasing number of people are being diagnosed well-before the age of 60.

“Say it isn’t so, Irene.”

I can’t do that.  What I can do, however, is tell you a wee bit about my book: Read the rest of this entry »

Blogging Award: a very tardy response

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First-Best-Moment-Award-WinnerDid you ever get so busy that you received an award and didn’t go pick it up, and then you forgot that it was waiting for you?  That’s me.  Lori, one of my most favorite bloggers, has been writing her blog Let’s Talk About Family since December 2011.  This fabulous person nominated me for the Best Moment Award in May of 2013.  All I can say is that not “picking up” my award qualifies me for the Worst Moment Award, but I’ll try to make up for it with this post.

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.  Thank you so much for opening up your life to us in the blogging world.

Rules for the Best Moment Award:

Winners post information about the nomination, thanking the person who nominated them, with their acceptance speech that can be written down or video recorded.

Winners have the privilege of awarding the next awardees (see below) The re-post should include a NEW list of people, blogs worthy of the award, and winners notify them the great news.  Winners should also post the award badge on their own website.

What makes a good acceptance speech?
Thank the people who helped you along the way, be humorous if you can to keep the reader entertained and smiling.  Provide inspiration that helps your story to touch the lives of others.

And here’s mine: I’m thrilled to be acknowledged as having something good to say from time to time.  I don’t think I’m an excellent writer, but I do have lots to say and I’m quite willing to write up a storm.  I’m the youngest of three siblings and the only one of us who has been involved in the lives of senior citizens – and everything that involvement implies – for close to two decades.  I’ve always loved people older than me; I guess it gives me comfort knowing that I’m younger than someone else.  My official responsibilities over the years involved: working in the senior housing industry both in the corporate environment and in assisted living/memory care facilities, being an Alzheimer’s Association caregiver support group facilitator, and a Certified Long-Term Care (LTC) Ombudsman for the State of Washington (an advocate for vulnerable adults living in LTC facilities.)  I’m retired from active work but I am actively still involved in being an advocate for the vulnerable by writing my first novel – a project I hope to complete by end of this year.  My novel focuses on the lives of family members who care for a loved one with Alzheimer’s or other dementia.

My nominees for the Best Moment Award are:

Kay Bransford, for Dealing with Dementia.  The reason I enjoy Kay’s blog is best described by her blog’s subtitle: A family caregiver’s journey to deliver loving care with grace and humor.  We all know there is absolutely nothing humorous about Alzheimer’s or other dementia, but humor can be found in the human interactions between caregiver and family member.  If you look for them,  you will find them.  Kay, I’ll be posting my acceptance of a different award you recently nominated me for very soon.  THANK YOU!

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.

Reflections on Dementia, Caregiving and Life in General is a must-read blog all the way from Singapore.  This blogger takes care of her mother who has Alzheimer’s and vascular dementia.  Her insights and her view of her world will engage you from the very first posting you read.

 

 

The tethered caregiver

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Painting courtesy of Mary Riesche Studios
Painting courtesy of Mary Riesche Studios

Imagine that you are the primary family caregiver for a loved one with dementia in your home.  You have no time to yourself while in the house so how can you possibly find the time to leave your loved one alone to complete some pressing errands?

But you do leave the house and you do leave your loved one alone at home, because you haven’t figured out how to get someone else to do those errands for you, or you don’t know how to secure someone else to watch your loved one while you do the errands.  I favor the latter option because a 24/7 caregiver absolutely must get out of the house and feed her soul while crossing items off her To Do list.

I went to Staples office supply store yesterday to pick up three items for my writing quest: a new thumb drive that I can trust to store my magnificent masterpiece of a manuscript; a new mouse pad because my right wrist and hand have worn out the previous one; and a ream of lined filler paper for taking notes and drafting new ideas.

Because it is currently back-to-school shopping time, Staples was crazy-busy yesterday.  The checkout line was very long and directly behind me was a young mother with a shopping cart filled with supplies for her two school-aged children.  An older woman with two items asked if she could please go ahead of her because she had a sick husband at home; the young mother graciously agreed to let her do so.  When it was my turn at the register, I turned to the older woman and asked her to go ahead of me to which she responded, “Oh thank you so much, you see I have a situation at home and I need to get back quickly.”

Have any of you been there – done that?

Do you know someone who has?

The following advice goes to those of you who know someone in a similar predicament as the woman at the Staples store: be the respite that person needs.  Don’t wait for them to ask for help – they won’t ask you; you must make the first move.  Put yourself in that someone’s shoes and imagine racing through your errands, all the while freaking out wondering what’s going on in the house while you’re away: the person with dementia wandering away from the house or falling down in or around the house, turning on the stove or running the water without turning either off, or letting someone inside the house who should not be inside the house.

Now it’s your turn: imagine the worst-case scenario and apply it to this situation.

Now do something about it.

Other articles to inspire you:

Solo Caregiving; Helping an Alzheimer’s Caregiver; Caregiving: Grief, Guilt, Exhaustion, and Discrimination

Helping an Alzheimer’s Caregiver

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Want To Help Someone Who Is an Alzheimer’s Caregiver? Here Are Some Tips.

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.)

Painting courtesy of Mary Riesche Studios
Painting courtesy of Mary Riesche Studios

Additional articles that will provide information and suggestions to non-caregivers on how they can help their neighbor, co-worker, besieged family member:

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!”

Teenage advocates against Alzheimer’s disease

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Alzheimer’s Foundation of America Teens (AFA Teens) brings hope that is sorely lacking from the Alzheimer’s medical community.  The younger generation is doing something that many of us older adults are not: bringing more awareness to a disease that most of us have been exposed to, either peripherally or specifically.  “AFA Teens, founded by a teenager, seeks to mobilize teenagers nationwide to raise awareness of Alzheimer’s disease, and to engage, educate, and support teens and their families.”

My family in the 70s. My dad died from Alzheimer's, and my brother's wife died from Alzheimer's.
My family in the 70s. My dad died from Alzheimer’s, as did my brother’s wife.

As adults, we are affected because the person with the disease is our spouse, partner, sibling, or older relative.  But what about the cousins, nephews and nieces, children, and grandchildren out there?  Children and teenagers are also exposed to this disease.  The challenges faced by teens who are actively involved with these relatives – living close enough to have frequent interaction with them – are challenges that adults have a hard time grasping.

“How come Pappy doesn’t recognize me any more?”  “Why does mom always forget the things that are important to me – like my birthday!”  That’s right; some teenagers have mothers or fathers with early-onset disease.  What should be one of the most exciting times in their young lives is instead spent as a co-caregiver with their other parent.  (I addressed this unfortunate family dynamic in my article, Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia.)

I strongly encourage you to visit the AFA Teens website.  I know you will be encouraged by the efforts being made by these young advocates.