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.”
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.
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.
If you have been bitten by a dog you’re in good company. I read the following statistics in the May 16, 2014 issue of the Seattle Times newspaper:
- In 2013, 4.5 million Americans were bitten by dogs in the United States;
- The above total includes more than 2 million children and almost 5,600 U.S Postal Service employees.
Gee, statistics for 2014 will include me in the number of Americans bitten in the United States. I seem to have greater potential for becoming part of those statistics than making a name for myself as a published author.
The title for this article is my shameless attempt to keep my novel-writing in the forefront of everyone’s minds.
I’m pretty excited however – not by the dog bite episode of May 7th – but by the status of my manuscript. I’ve almost finished reading it through – for the zillion’th time – and thus far I’m pleased with the cohesiveness of the storyline. I’m still making edits in grammar and punctuation – semi-colons and hyphens/dashes are really stymieing me – but I’m hoping if I do my very best, a copy editor will do the rest. I am 100% certain that an agent will want to represent a book that throws a personal and touching spotlight on those who are living with Alzheimer’s and dementia. There’s not an agent or publisher out there who hasn’t been affected by this disease – either peripherally or specifically.
Please stay tuned as I will be providing updates in an effort to keep me on my toes, keep me honest, and get this d@*#mn book published.
Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable. Sometimes the unpredictability brings heartache and extreme difficulty.
sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty. Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.
Click on the link above to read about one man’s journey from spousal caregiver to professional coach of those who are caring for loved ones with Alzheimer’s or other dementia.
During my time of caregiving, (my father died in 2007 from complications relating to Alzheimer’s disease) I oftentimes sought out the advice of anyone I could get my hands on who might a) lighten the emotional load I was carrying; b) lead me in the right direction when looking for next steps in the caregiving process; and c) let me cry a river as I pondered whether I was doing enough for the one for whom I provided care.
Way back when I was enmeshed on my caregiving journey, I was not aware that this type of coaching service was available – perhaps it wasn’t. What speaks volumes to me is that the prevalence of Alzheimer’s and other dementia is such that more and more people seem to be adrift and searching for that beacon of light that might pull them safely to shore.
One thing I know for sure, however, is that if it takes a village to raise a child, it certainly takes at least that when trying to take care of a cognitively challenged parent, spouse, sibling, partner, or friend.
I addressed some of the issues of Driving under the influence of dementia in an article I wrote in November 2013. Back then I hadn’t planned on writing a Part 2 for this article, but after a couple local incidents involving DUI of dementia, I must provide the following.
Yesterday afternoon in a suburb of Seattle (in Bellevue), an 89-year old woman with early stage Alzheimer’s left her house for her normal daily routine of going to her favorite pancake house, then to several retail locations. She never returned home last night and as of today, she is still considered missing. I hope the outcome of her case is better than that of another elderly person with Alzheimer’s who also went on a brief errand, but never came home. (Update as of 12/28/13 6:45 pm: this woman was found safe approximately 16 hours after she first left her home. She was found 20 miles away from home. Unfortunately, she wandered 20 miles away from her normal driving area.)
On Saturday, December 21, 2013, Joseph Douret left his Seattle area home (in Issaquah), to grab dinner. He was reported missing the next day by his wife who stated that he never came home the previous evening when he left to grab some dinner for the two of them. Mr. Douret, who was suffering from Alzheimer’s, was found dead in his vehicle on Christmas Eve. Police indicated that he appeared to have died of natural causes.
Taking away the keys to a vehicle – or getting rid of the vehicle as need be – are both very difficult tasks, but these are tasks that must take place if a loved one with dementia still has access to their automobile. “But he/she is only driving a few blocks to pick up a couple items; there’s no way he/she will get lost.” Unfortunately, what should be a routine drive can become a death journey because nothing is routine for the person with a brain addled by dementia. Nothing looks normal or familiar; the anxiety ratchets up several notches; panic sets in; and the countdown begins for that person’s last hours of life on earth. Even if the person is eventually found safe, he or she will have endured a very uncomfortable time emotionally and physically. The positive outcome of that incident, however, is that it will most likely be the catalyst that spurs people on to remove all driving options from their loved one.
Please make the decision today to take action and do the responsible thing on behalf of the person with Alzheimer’s or other dementia.
It’s the not-so-new DUI that is becoming as rampant as are the increased incidences of Alzheimer’s disease in the world.
Are you enabling someone in your family by not having the difficult, yet necessary, conversation about driving safety? “She only uses the car to drive to the grocery store, eight blocks away.” Oh, is that all? Well then, nothing could possibly happen that might harm/kill her or harm/kill another innocent driver or pedestrian, or child on his bicycle zooming out of a driveway and into the street. Right?
In the attached article, Driving with dementia: the dangers of denial, I go into detail about the hazards inherent with driving under the influence of dementia, so I won’t repeat its content here, but I encourage you to take the time to give it a look-see. I’m readdressing this issue because of what I witnessed today:
- A car making an unsafe switch of lanes, barely missing the huge SUV in front of which she maneuvered her car;
- Then I witnessed this SUV – certainly not understanding the circumstances surrounding this affront to his driving – quickly passing the woman and doing the same to her as had been done to him – abruptly changing back into her lane with nary a few inches to spare between his back bumper and her front bumper;
- Now I’m behind the impaired driver who stops suddenly at an intersection (we have the green) and she puts her left hand turning indicator on, only she’s not in the left hand turn lane – she’s in the through lane and she’s risking a multiple-car pileup by her actions. I could not move to the left or right to avoid her so I laid on the horn and fortunately, she proceeded straight ahead, not making her left turn;
- Further down the road she managed to get into the left-hand turn lane and as I passed her, I clearly saw an impaired and confused woman in her 70’s who appeared unaware of where she was or where she was going.
I was in no position to follow her to assure that she was okay, but I did throw up a prayer that she would get safely to where she needed to be – without harm to anyone else as well – and that her family or someone close to her would do what was necessary to take away her car keys.
Denial about this issue doesn’t solve anything. Please make the decision today to remove the keys from a person who absolutely should not be driving because of his or her dementia.
You just may save someone’s life.