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.
More Alzheimer’s patients finding care far from home | Nation & World | The Seattle Times. This article looks at the direction in which Alzheimer’s care may be shifting. There are currently 44 million Alzheimer’s patients globally with 135 million projected by 2050. Even now, Western spouses and family members are faced with an insufficient supply of qualified nurses and facilities, while other countries provide cheaper – and to some minds, better – care for those suffering from an illness for which very few effective treatments have been developed, and that is always fatal.
The treatment center that is the major focus of this Associated Press article is located in Thailand – the Baan Kamlangchay center. Additional elder care options in other countries are mentioned, such as the Philippines, Eastern Europe, Spain, Greece, and Ukraine. Cost is the driving force of those who are “exporting” (not my word) the elderly to these foreign countries. One gentleman from Switzerland brought his 65-year old wife to Baan Kamlangchay because the monthly cost for her Alzheimer’s care ($3,800) is a third of what he would pay in his own country and he states that the staffing ratios are far better, and the activities more engaging. In the Philippines, care is offered to Americans for $1,500 to $3,500 a month, compared to the average of $6,900 for a private room in a skilled nursing facility in the United States, according to the American Elder Care Research Organization.
Cost shouldn’t be the only consideration, however, when moving a loved one into Alzheimer’s or dementia care – and that applies to every country in which that care is available. What are the training requirements for those who will be providing this disease-specific care for your loved one? What type of governmental or social service oversight is in place to protect and advocate for the rights of those patients who can not advocate for themselves? The latter question becomes extremely relevant when the patients’ families are not around to observe care on an ongoing basis. In the previous paragraph I mentioned the man who brought his 65-year old wife from Switzerland to Thailand for care. He is now faced with the very difficult decision of perhaps leaving his wife of 41 years in the facility, and returning to Switzerland to carry on the rest of his life.
That’s a decision unbearable in its emotional implications.
What are your thoughts? Are you willing to become an expatriate should this medical need present itself in your life?
The attached video, just 3 minutes long, showcases how very personal Alzheimer’s and other dementia are to those involved. The toll on the patient – measurable, as you will see in this Shapiro family video.
The toll on the family – especially those caring for a member with the disease – beyond measure. Imagine taking care of someone who has lost his or her faculties, who can no longer express themselves verbally, and who has become a shell of his former self. Can you imagine it?
Imagine you must, because I sincerely believe that the only way people will stand up and take notice and do something about this disease, is to wear the mantle of a loved one with the disease, and/or the mantle of the beleaguered caregiver.
If you can help monetarily, please do so: www.alz.org.
If you can help within your community to relieve the stress of a caregiver with whom you are acquainted, that support is equally as needed and valuable.
Whatever you do, please do something to make a difference.
and I’m as mad as hell about the millions of crimes that it has gotten away with.
Alzheimer’s and other dementias are unfair to the one diagnosed and to all those involved in that person’s life. The unfairness unfolds with the worst day of that person’s life – diagnosis of a disease for which there is no cure – therefore it is always fatal – and it is a disease where little progress has been made in treatment options.
Let me introduce you to two fabulous people who are no longer with us because this disease killed them. Yes, Alzheimer’s murdered them.
My father, Don, was born in 1918 in Toronto, Canada. He married my mother, Patricia, and they had three children. They became U.S. citizens in the late 1940’s/early 1950’s. My father was an extremely distinguished, courteous, humorous, and dedicated family man. He received his Alzheimer’s diagnosis on June 3rd, 2005 and I was there by telephone conference, having attended his initial neurological evaluation a couple weeks earlier. He died at approximately 12:10 a.m. on October 13th, 2007.
My sister-in-law, Nancy, was diagnosed with mixed dementia just a few months after my father died. Nancy was born in 1942 in Quincy, Massachusetts. She graduated from UCLA with a degree in flute performance and used those skills in many venues throughout her life. Nancy had three children from her first marriage – children of which she was very proud. Nancy was an extremely talented interior designer, opening her own design business in 1987 – the same year that she married my brother, Don. Nancy died from mixed dementia, that also included Alzheimer’s, at approximately 11:05 a.m. on July 4th, 2012. Just two and a half months later, my brother and sister-in-law would have celebrated their 25th wedding anniversary.
Saturday, September 21st, 2013 is World Alzheimer’s Day. One in every three seniors dies with Alzheimer’s or other dementia. If you do not die from Alzheimer’s, you die with it. From Alzheimer’s Association 2013 Facts and Figures.
Won’t you consider making a monetary donation in the hopes of capturing this murderer?
U.S. website for the Alzheimer’s Association: www.alz.org
International website: www.alz.co.uk
Other countries have their own dedicated websites as well. Please find those sites through any search engine you would normally use, and let’s slap the cuffs on this criminal disease.
A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones. For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.
Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load. Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.
But does such monitoring invade the loved one’s privacy? Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring. Or do they? What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life. But I digress.
At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place. The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly. If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away. In reality, however, medication mismanagement might be taking place, carried out by the parent.
The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day. The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening. I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it. HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits. Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.
I’m skeptical of Comfort Zone but I’m also its fan. I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation. My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past. A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few. More disease control financing = more cures.
One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences. So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden. Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind. Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible. I’m sorry to burst your bubble – but it’s true.