No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:
- In 2016, 15 million Americans provided unpaid care for people with Alzheimer’s or other dementias;
- That equates to 18.2 billion hours of care valued at $230 billion;
- 1 in 3 adults dies with Alzheimer’s or other dementia;
- It kills more than breast cancer and prostate cancer combined;
- Since the year 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s disease have increased by 89%;
- Every 66 seconds, a person develops the disease.
My novel, REQUIEM FOR THE STATUS QUO, (Black Rose Writing publication, July 2017) spotlights one family’s experience in particular – the Quinn family – while also visiting other households affected by Alzheimer’s or other dementias.
- Eddie and Katherine, a couple in their 40s. Katherine has a combination Alzheimer’s/Lewy Body dementia, a type of dementia that causes somewhat violent behavior and speech;
- Frank and his son, Sean, the latter of whom suffers from a traumatic brain injury (TBI) incurred while on deployment in Afghanistan;
- Victoria and George, a couple in their 80s, trying to crawl through the maze of George’s Alzheimer’s disease;
- Rose and Sophia, sisters in their 50s, struggling with the effects of Sophia’s vascular dementia;
- Donna and Kelly, partners in their 60s, experiencing the devastating effects of Kelly’s Parkinson’s disease and the dementia associated with her disease.
These are characters like you and I. They were living their lives the best they knew how, being good people and doing good for others, yet Alzheimer’s still managed to grab them by the throat and refused to let go.
The storyline is a difficult one but the way in which I have portrayed all of these precious people will touch your heart, and at times, your funny bone. No, there’s nothing humorous about the disease, but people will be people, and when they’re confronted with the impossible, they can find – or create – a bright side onto which they can find redemption and community.
I look forward to introducing you to my characters. Just a few more months before they’ll become a part of your life.
I’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.
Walk in Their Shoes… Just for a Minute. The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.
Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us. We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia. If we could, we would shriek at what we see and experience.
So we get frustrated – understandably so. We raise our voices in anger – and feel guilty immediately thereafter. We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!
Do not ask me to remember is a loaded statement and one which should give us pause. We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born? Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question? Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with?
Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.” And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?
Because they don’t remember.
Alzheimers Research Funding Lags Other Diseases- Dementia – AARP. The January/February 2015 AARP Bulletin focuses on the prevalence of Alzheimer’s disease in America. The cover contains photos of fifteen celebrities who died from the disease. Some of those spotlighted may surprise you because their cause of death was not broadcast to the media.
What a shame.
It’s a shame that the stigma attached to the disease still manages to relegate Alzheimer’s to the closet. Cancer used to be that closeted disease – so much so that many years ago people shied away from even mentioning the word, preferring to call it “The Big C.” Before Alzheimer’s disease, cancer was the whispered disease but now the populous embraces each and every body part afflicted, even those considered of a private nature: breast, ovary, prostate, rectum. Read the rest of this entry »
If you’re like me, you’re wondering how another year has slipped by so quickly. I’m sure there were a few of the 52 weeks that seemed to slog by, but all in all we can now look back and marvel at what we accomplished, or what others accomplished in our stead, during the past 365 days.
An accomplishment with which I’m happy is having authored this blog for the past three and a half years. I’ve provided this blog for you, but I’ve also provided it for me because I truly enjoy having the opportunity to share my experiences and my viewpoints; I hope in the process that I have encouraged, helped, and entertained you. From the start of Baby Boomers and More in 2011 to the end of 2014, I posted 520 articles. I’d be a very happy blogger if the quality of those articles surpassed the quantity because if I’m just talking into thin air without benefit to others, its hardly worth the space my blog occupies.
Here are links to the five most visited articles in the year 2014 based on WordPress statistics:
Read the rest of this entry »
Did 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.
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!”