Keep in mind that although he writes about our elderly parents (those over age eighty), the principles he puts forward apply equally to a spouse or partner, sibling, or good friend. If you are invested in a loved one’s well-being, please consider reading this book. Bear with me as I provide a lengthy quote that characterizes this physician’s concerns:
Families must come to appreciate that “medicalized” care is very different in nature and cost from the personal health support and hands-on caring so essential for your parent. In reality, our American medical system is best at managing acute crises and supplying excellent specialized elective procedures – joint replacements, organ transplants, eye improvements, cosmetic changes – all modern technological wonders.
As for the more ordinary and common management and support of elders and families dealing with chronic problems of aging and slow-moving diseases, our medical care system has not done so well. Some elderly patients are fruitlessly subjected to what some critics now call “death by intensive care … “
Now let’s put ourselves into the shoes of a vulnerable adult sitting in an examination room waiting for the almighty doctor to walk through the door. Answer this question for me: When was the last time you personally felt rushed during a doctor’s visit for yourself? (Mine occurred last week – but I digress.) Many of us think faster than the vulnerable adult, are able to keep track of what the doctor is saying, and have sufficient cognitive awareness to discern the doctor’s recommendations or treatment options. Dr. McCullough wonders how an elderly person could possibly be treated effectively during a fifteen-minute office appointment by a doctor who peers into a computer screen, barely acknowledging the presence of the patient. How can that physician possibly treat the complexities of an elder’s needs if he/she is not fully engaged in examining the patient? Most often, the elder patient will not volunteer information that is not in direct response to a doctor’s insightful inquiries. They are of a generation that does not question a medical professional – “after all, they have the medical degree, not me.” The elderly patient may exit the exam room having not even discussed his or her medical concerns – simply because the doctor didn’t give her an opportunity to do so.
Dr. McCullough emphasizes how important it is that each vulnerable patient have a “Circle of Concern” – a group of people that provides steady support and insight into the patient’s needs. That group may consist of immediate family members, friends, neighbors – anyone dedicated to providing an “active, extended advocacy partnership” that will not only attend to the patient’s technical needs, but also the emotional and human needs that are perhaps in need of greater attention.
My article, Caregiving: The Ultimate Team Sport, promotes a similar type of caring, using the analogy of a team’s various members, and their collective roles on the team. Each person has a skill that supports the other team members’ skills. The Circle of Concern serves this same purpose.
Perhaps we should all consider how we would like to be treated by others if/when we become dependent upon their contributions to our quality of life. Dr. McCullough offers this snippet of Tibetan wisdom: Make haste slowly.
Not all decisions are emergent ones. Isn’t a person’s quality of life worth stepping back so that appropriate, “guided” decisions can be made? Rushed judgment should not take the place of carefully considered care. As Dr. McCullough states, “Time to begin to ask for more time. Short of a crisis, don’t be rushed.”
In January of this year, I provided a workshop for middle school students (8 to 12 years old) during their school’s annual Health Fair. Given my predisposition to focus on the older population during my career, I was asked to bring forth a topic that might resonate with, and educate, the children who attended my workshops; something about old people, a topic about which they supposedly knew very little.
The title of my workshop was Your Grandparents are Cooler than you Think. My goal was to bridge the gap that exists between those aged sixty years and older, with the younger-aged set. My sophisticated, yet relatable, PowerPoint presentation offered many comparison and contrast examples that tended to disprove that any gap exists between such disparate groups. (That was my goal.) One can’t deny that some obvious differences exist, but the similarities with subject matters that really count are quite revealing. First, I offer you a quote from the Atlantic Journal, challenging you to guess when this particular entry was published. I read this same quote to the middle school students.
The world is too big for us. Too much is going on. Too many crimes. Too much violence and excitement. Try as you will, you get behind in the race in spite of yourself. It’s a constant strain to keep peace … and still, you lose ground.
Science empties its discoveries on you so fast that you stagger beneath them in hopeless bewilderment. The political world now changes so rapidly, you’re out of breath trying to keep pace with who’s in and who’s out.
Everything is high pressure. Human nature can’t endure much more!
If you guessed that the above quote was ripped from today’s headlines – or thereabouts – you are incorrect. These vital words were written 180 years ago, published on June 16, 1833. The common sentiments of that time seem almost indistinguishable from what is in the minds of people today. Amazing. I guess we’re not much different from the people living in 1833.
(Photo credit: Wikipedia)
One of the topics these middle schoolers and I discussed was Bullying. The students were divided into eight groups of five each and asked to discuss the similarities, if any, of this globally prevalent problem. Their insights were astounding. Here is my paraphrase of some of their comments:
I think bullying in the olden days was more physical, whereas today, it’s psychological in nature.
Bullying a long time ago was limited to one-on-one interaction. Today, if just one person is bullied, that act is broadcast to thousands just by the push of an “enter” key on ones computer.
I think there is little difference between bullying now, versus then. You see, the motivation is the same; the intent to make someone else feel small; to exert ones power over another. It doesn’t matter what that looks like or when it took place, the motivation remains the same.
I was humbled by these students, but I should not have been surprised by their astute thinking processes. Perhaps the person who learned the most during my workshop was the presenter. I thought I needed to convince them of how similar their elders are to them. I guess the joke was on me.
The inspiration to write this article can be attributed to the driver behind me on my way home from the store today who bullied me by riding my bumper the entire way home. My going the speed limit must have been quite an affront to her sensibilities. (I couldn’t pull over to the side of the road but she had plenty of opportunities to pass me – evidently choosing not to do so.) At almost sixty years of age, I felt threatened, powerless, and humiliated.
Being a mind reader would greatly benefit every parent of a newborn baby, and all caregivers of those with Alzheimer’s or other dementia. The article attached above, by Blogger Kathy Ritchie, is a thoroughly relatable article that is raw in its presentation, but wreaking with truth because of that rawness.
(Photo credit: Wikipedia)
Reading Kathy Ritchie’s article I was instantly reminded of a line from the television series, Up All Night, wherein new parents, played by Will Arnett and Christina Applegate, fail miserably in their efforts to get their infant daughter Amy to fall asleep and stay asleep. They try everything they can think of to address the baby’s distress: diaper changing, giving her a bottle, reading stories, making funny faces – you get the drill. In desperation, Will Arnett finally says to his infant daughter, “We’re on your side!”
When you can’t force understanding on someone you’re taking care of, you wing it or you pull every trick out of every “How To” book written on this task of caregiving. Yet more often than not, even with all the resources available at your fingertips, you make little headway in your attempts to meet the emergent needs your loved one presents to you. Or what works one day (or hour) may not work the next day. Why? Because Alzheimer’s and other dementias are very unpredictable diseases; and people with dementia are unique individuals, equally as unpredictable. There is no one formula for how to respond to any given situation.
As Kathy states in her article, “You have to work very hard to find the funny.” I think many of us, given the choice, would settle for finding all the right answers and do without finding the funny – but the funny incidents are a great addition to ones day.
Caregivers of the world – you are not alone and if you need someone to tell you what a great job you’re doing, I’m telling you right now – YOU’RE DOING A GREAT JOB!!!
Your journey is filled with speed bumps and ruts in the road, but you continue on that path anyway because of your commitment to your loved ones. After all, they had no choice in the matter when they ended up with Alzheimer’s or other dementia. You’re both innocent victims.
In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come. I also talked about caregiver statistics.
One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds. In actuality, the stats are far greater than that. Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one. I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.
The following statement is attributed to former First Lady of the United States, Rosalynn Carter:
There are only four kinds of people in the world – those who have been caregivers,
those who are currently caregivers,
those who will be caregivers, and
those who will need caregivers.
I really don’t think there’s any way around it. How about you? Have you dodged the caregiver or being-cared-for bullet yet?
Lest you think that Alzheimer’s has nothing to do with you, look at the following statistics provided by the Alzheimer’s Association:
By the year 2050, nearly one million new cases will be diagnosed each year – that’s one American developing Alzheimer’s every 33 seconds. Taken further, that most likely equates to nearly one and a half million new family caregivers each year – considering that at least one family member will be involved in managing a loved one’s care;
Ten million Baby Boomers will get Alzheimer’s;
On average, 40% of a person’s years with Alzheimer’s are spent in the most severe stage of the disease;
The number of Americans that die each year from Alzheimer’s disease has risen 66% since the year 2000;
Alzheimer’s is the sixth-leading cause of death in the United States;
Today, there are no Alzheimer’s survivors – none.
Please take time to read the article I’ve attached above and consider the following: We are going to pay for Alzheimer’s one way or the other – now, or later.
This is a disease that will affect you, your children, your grandchildren, great-grandchildren, and beyond. Burying our heads in the sand won’t solve anything. Please consider donating to the Alzheimer’s Association as well as contacting your state’s congressional leaders asking for greater federal funding for Alzheimer’s research. Why? Because of this staggering statistic:
According to the National Institute of Health, the federal government currently spends much less money on Alzheimer’s research, prevention, and cure than on other conditions such as cancer, heart disease, and HIV.
In a recent NY Times post, Catherine Rampell writes about how the economy is affecting Baby Boomers; more specifically that it’s not just a matter of postponing retirement, it’s the need to hold down more than one job to meet the daily – and future – essentials of their lives. Ms. Rampell is quick to point out, however, “(I)n the current listless economy, every generation has a claim to have been most injured.” Certainly that seems to be the case as I have heard that Generation X and the Millennials have complained that Baby Boomers are to blame for the state of the economy – present and future.
Crowd gathering on Wall Street after the stock market crash of October 1929. (Photo credit: Wikipedia)
Of this I am certain – each generation before us, and every generation after us, will contribute positively and negatively to the world as we know it. I have to believe that every generation has pointed their fingers at generations other than theirs, and talked about the good, the bad, and the ugly that permeates their times. Let’s look at those generations as posted on CNN, American Generations Through the Years: (figures and personalities provided by the Pew Research Center and CNN)
G.I./Greatest Generation: Pre-1928; Kate Hepburn and George H. W. Bush
Silent Generation: 1925 – 1945; Martin Luther King, Jr. and Tina Turner
Baby Boomers: 1946 – 1964; Oprah Winfrey and Michael Jordan
Generation X: 1965-1980; Jay-Z and Tiger Woods
Millennials: Post 1980; Christina Aguilera and Mark Zuckerberg
We’re all struggling in some way, and we’ll continue to struggle as we mimic the overall consensus felt through all generations. There are carefree times, and then there are all the rest of our days, and we get through them, because we must. We’re better for it, but it doesn’t feel like that while we’re going through it. I have to look to Brendan Marrocco, a twenty-six year old Iraq war veteran who lost all his limbs because of a roadside bomb in 2009. In an Associated Press story, in the Seattle Times, Brendan said he could get by without his legs, but he didn’t like living without arms. “Not having arms takes so much away from you. Even your personality … You talk with your hands. You do everything with your hands, and when you don’t have that, you’re kind of lost for a while.”
The end of January 2013, six weeks after getting a double arm transplant, Brendan said the following at a coming-out press conference about how he’s made it thus far:
Just not to give up hope. You know, life always gets better, and you’re still alive. And be stubborn. There’s a lot of people who will say you can’t do something. Just be stubborn and do it anyway.
Sobering words, and ones that force us to reassess our current situations. I’m not trying to minimize what you might be going through, nor of what’s going on in my life. It’s just that I personally can’t help but focus on Brendan’s plight and then consciously turn my eyes away from my me-ness, and towards other-people-ness. Is Brendan worse off as a Millennial who lost so much but gained a huge dose of intestinal fortitude, defined as strength of character; perseverance? If it were me, I would be wallowing in a very deep pit of self-pity. That doesn’t seem to be Brendan’s current location.
The article above by a fellow blogger who recently lost his wife due to complications of dementia, echos my sentiments about the need to invite others to join you on your caregiving journey. Walking the path alone is not only inadvisable, but in most instances, it’s impossible. With so many unknowns waiting around the corner, every caregiver needs to enlist the help of those who can effectively support him or her, and as a result, provide much needed assistance to the one being cared for.
(Photo credit: Wikipedia)
I’m a firm believer of team support, as I stated in my article: Caregiving: The Ultimate Team Sport. Another article, Solo Caregiving, provides encouraging ways in which to recruit team members when there are no family members on which to rely.
Taking care of yourself is not selfish. Developing a team of caregiver-helpers goes a long way towards taking care of numero uno – YOU!
I’ve attached, above, a link to a fellow blogger’s site. The message is short and instructional.
What resonated with me about the statement provided in the link, is that each of us has experienced the after effects of walking in the midst of someone’s bad day and we inadvertently become the recipient of that bad day’s vibes. And sometimes the shoe is on the other foot. It’s unavoidable. I guess that’s why the words of wisdom provided in the link, are words that we all need to take to heart.
The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents. (My mother died in 1994, my father in 2007 – those conversations have long since taken place.) In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier. That’s just how it was in our household growing up. But I’m aware that universally, that is not the case.
GIFTS. Who doesn’t like receiving gifts? Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!” “What, for me?” Yes – for you. Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item. Fun, isn’t it? Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!
THE GIFT THAT KEEPS ON GIVING. A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive. My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death. I get that – I really do. So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.
When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended. I’ll use my father as an example. My father died at the age of 89 on October 13, 2007. Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death. There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying. His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes. Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation. His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.
The legal document, drafted years earlier, was drafted for this specific time. Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision. If ever there was a time when dad’s gift was ready to be presented – this was it. That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad. Beautiful.
You don’t have to wait until you are 50 years or older to put your wishes in print. Old people aren’t the only ones dying who require some sort of affirmative decision-making. Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death. A forty-year old person could have a stroke and be on that same precipice. It’s never too early to do something about your exit from this world as we know it. You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document. That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go! Literally.
If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself. Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory. Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision. Who woulda thunk? Not me.
The Holidays may be over, but the season of gift-giving is not. Won’t you consider giving your loved ones one more gift this year?
Attention one and all! There’s a new website out that will be addressing the challenges of being a caregiver. The author/owner of this website, Don Desonier, is coming from the perspective of someone who very recently lost his spouse as a result of dementia complications.
Don’s five-year journey as a caregiver provided him with heart-rending experiences from which he garnered exceptional insight and wisdom. I personally look forward to his article postings – so much so, that I became his first blog follower. At the very least – why don’t you check out the website and visit from time to time. I feel confident that you’ll walk away feeling renewed with the realization that you’re not alone, and somehow or another – there’s a way through this difficult journey that you’re on.
I commend this Blogger, and I love him. Don is my brother and he was an extraordinary caregiver to his wife of almost twenty-five years.
In Washington State, there are currently 150,000 people diagnosed with Alzheimer’s Disease. In the rest of the Nation, more than 5 million have Alzheimer’s disease. That number will jump to 16 million by the year 2050. Most of us envision an elderly person with some sort of dementia. We might even expect it to occur in those 85 or older. Listen to me Baby Boomers – young and not-so-young – the number of people diagnosed before the age of 65 – known as early-onset Alzheimer’s – is more common than you think. In the United States alone, those with early-onset disease currently number 200,000.
That number decreased by one when my exceptional sister-in-law died on July 4, 2012 at the age of 69. Just about the time that Baby Boomers should be anxiously making their final retirement plans – such as was the case with my brother and his wife – they are instead dealing with the challenges of managing a disease for which there is no cure.
Sixty-four year old Lon Cole, a resident of Puyallup, Washington, is one of the 200,000. The local NBC affiliate, King5 in Seattle, Washington, ran a touching story about this gentleman. I hope you will take the time to look at this news article: Alive and Thankful: Living with early-onset Alzheimer’s. Those who have managed, or are currently managing, the care of a loved one with early-onset disease, will be touched by this family’s story.
I have been asked to hold workshops at two different Middle School/Junior High Schools in the next few weeks in an attempt to show that the gap between us Baby Boomers and the pre-teen/young teen population isn’t as big as one might think.
Photo by KF. (Photo credit: Wikipedia)
The age group of this audience is not one with which I have ever worked but I absolutely love stretching my skill set so I’m very excited to take on this task. I hope to deliver a workshop that engages the younger age group and leaves them with the tools needed to be more comfortable connecting with people in older age groups.
Description of the workshop, submitted to the schools: There is so much to be shared between generations, but we often miss out because we feel as though we speak different languages – and sometimes we do. For example, when you say that something’s “filthy,” your grandparents might have said it was “boss.” Believe it or not, your grandparents, and your great grandparents, were your age once so you do have that in common, and while it’s true that there is a lot to learn from older generations, they can learn a lot from you, too.
That’s where you come in. We all know that there are obvious differences between the two generations, given the advancement of technology and the like, but I think a closer look at those differences brings about the realization that many similarities exist but they are just dressed differently.
I covet your input so please feel free to leave some suggestions and/or comments below.
It’s happening again. Churches are being encouraged to get involved in politics by using their worship space as the venue in which worshipers can sign petitions that speak out for, or against, certain governmental policies.
In April 2012, prior to November’s General Election, the Roman Catholic Church in Washington State, and other statewide mainline Christian denominations, held petition signings during their worship services in an attempt to shoot down Referendum 74 which was drafted to acknowledge marriage equality between men and women who chose to marry someone of their own gender. Politics invaded that worship space, thus blurring or obliterating the line that separates spiritual church practices from government policy.
(Photo credit: Wikipedia)
Earlier this week, a local Seattle area church capped off their worship service by offering Letters to the President for church members to sign supporting restrictions regarding gun control. Today, President Obama announced the formation of a commission on gun control and encouraged the American people to help change the current gun laws in an effort to reign in gun violence, and to focus on improving access to mental health services. You’ll hear no argument from me on that effort – I might sign any worthwhile and well-thought out petition that is not being promoted by any religious leader and not being made available in any church organization’s worship space. In today’s statement, however, the President asked for the help of mothers, fathers, sisters, and brothers, Pastors, and the like, to be a part of this effort because he can not do it by himself. It is my hope, however, that these efforts will not be cloaked in the trappings of religious beliefs or precepts. Standing at the pulpit trying to persuade church attendees to support more rigorous gun control measures – or to not support such measures – is an abuse of the pulpit.
Surely there are other non-pastoral men and women who can provide the same well-thought out petition signing opportunities centered around gun control and mental health issues in more public and civic settings.
(Photo credit: Wikipedia)
Retail locations, libraries, city and county government offices, and – dare I say it – school campuses – come to mind as more appropriate locations for such efforts. Those close to me know that I am a well-read, spiritually sensitive, and globally aware human being. I’m outspoken and painstakingly fair in what I believe and in what I support, but on this issue I can not back down: anything politically motivated must be separate from all that is housed within the walls of ones worship space. You don’t have to believe as I do, that’s your right. I am simply, yet passionately, proposing that any efforts such as were introduced today, not be cloaked in the vestments of religion.
Twenty young children and six school employees lost their lives in a Newtown, Connecticut elementary school today.
Approximately 40 parents said good bye to their young children for the last time this morning – children whose siblings, aunts and uncles, nephews, cousins, and grandparents, have one less family member. The school employees’ families are one short as well.
A lone gunman broke his way into an elementary school today with a Bushmaster .223 long rifle and two semi-automatic pistols: a 9mm Sig Sauer, and a 10mm Glock. He will not be tried in a court of law. He was the 27th human life that breathed its last at the school today.
This tragedy currently ranks as the 2nd worse school shooting in our Nation’s history. The 2007 Virginia Tech massacre of 32 takes 1st place; the Columbine Colorado High School incident comes in at 3rd place, with 13 massacred.
How does anyone reconcile the horror of this act?
And how do we erase the picture from our minds of children running down the school corridor with their eyes shielded, as advised by the emergency responders, to avoid seeing the carnage in and around the school office. You see, the school principal, a mother of five children of her own, and the school psychologist, were two of the six adult employees murdered today. But wait – there’s more. The gunman killed his mother at her home. All weapons used during the massacre were legally registered to the mother – a gun enthusiast.
Why even write an article about this tragedy when there is no lack of news coverage at your fingertips?
My reason for doing so is to vainly try to express my horror and grief over the loss of life that occurred today, and the loss of innocence that was stolen from the surviving children who witnessed the carnage. At this time of year, these children should only be concerned about whether the items on their Holiday gift lists will appear in their homes. Now these children – and all children in schools throughout the Nation and the World – have to wonder if their school is safe; if they can run away fast enough; if their favorite teacher will be a target.
I don’t have anything else to say other than to leave you with a sentiment from Nobel Peace Prize winner, and Holocaust survivor, Elie Wiesel:
We must choose between the violence of adults, and the smiles of children; the ugliness of hate and the will to oppose it; between inflicting suffering and humiliation on our fellow man, and offering him the solidarity and hope he deserves for naught. Even in darkness, it is possible to create light and encourage compassion. There it is – I still believe in man, in spite of man.
As with my November list of “celebrations” the last month of the year is filled with many notable – and not so notable – events, some obvious – some not so obvious:
Dec. 1: AIDS Awareness Day; Rosa Parks Day, Playboy Magazine first published (had to add something for everyone)
In all of my busyness, I was not aware of this gentleman’s response, contained in the link above, to Ann Coulter’s usage of a word that evolved people no longer use when describing those with Down Syndrome or other learning disabilities. During the most recent U.S. Presidential Election, I watched the interview in which Ms. Coulter used the R-word. She made no apologies, and she even scoffed at the idea of having to be politically correct all the time. I was horrified, but I didn’t do anything about it.
John Franklin Stephens did something about it – and did so quite eloquently. You are a hero to me Mr. Stephens, and you are a hero to the rest of us who have a heart of compassion towards others. A great definition of compassion is as follows:
Compassion isn’t a sign of weakness, but of civilization. – Nicholas Kristoff, Seattle Times columnist.
I think that as a society most of us are trying to be more civilized, rather than less. That doesn’t appear to be the case with Ms. Coulter.
Sally Abrahms’ article linked above does a fantastic job of addressing some common emotions felt by the family caregiving community – those who provide free caregiving services to their loved ones. Let’s look at the three emotions she mentions and also look at the struggles many caregivers experience at their place of employment.
Grief. We grieve the loss of the person who is still with us. “When someone dies, it is an overwhelming and horrible experience, but it is the end of something,” says Suzanne Mintz, cofounder of the National Family Caregivers Association. “But with a caregiver, the grief is perpetual; it goes on and on and on.” Until you’ve experienced the ambiguous loss of your loved one, you can not say that you understand that particular type of grief. This ambiguous loss may result from a loved one’s dementia, debilitating disease, or other conditions that rob the patient of their physical or cognitive abilities. Ms. Mintz states that when one person receives a diagnosis, you both receive the diagnosis. You both experience the gradual loss of the life you once had and you know it won’t be coming back. That is a grief that keeps on giving because as time goes on, more and more of one’s previous abilities disappear right before your eyes.
Guilt. “I wish this would all be over so I can get my life back.” Oh my gosh, did I just say that? Many of you have felt that way and then struggled to rid yourself of the ensuing guilt. But guilt is constant – whether it manifests itself in believing that you are not doing enough for your loved one, not doing enough for your family, feeling negative towards the one receiving your care – it is constant. And it is normal. These negative feelings don’t make you a bad person. Rather, they are proof that you are a sensitive, aware and evolving being who hasn’t yet perfected the art of living.
(Photo credit: TNLNYC)
Exhaustion. Physical, emotional, and spiritual exhaustion sneak up on you and if not attended to early enough, they are killers. In my article, Caregiver: put on your oxygen mask first, I address the need to place yourself as more important than the person for whom you are providing care. “Gee, that’s pretty darn selfish!” Not at all. If you get what I’m talking about, you’ll agree that your loved one’s care is fully reliant on your ability to provide it. You can’t do so if you are on the brink of exhaustion, or worse, you die before your loved one, which is more common than you would like to think. You need a caregiving team. That team may consist of other family members and/or neighbors and acquaintances. You can’t do it all by yourself. If you’re a solo caregiver, check out the article, Solo Caregiving. This article provides tips on how to get the help that you need from those around you.
Discrimination. According to the recent report, Protecting Family Caregivers From Employment Discrimination, “roughly 42% of U.S. workers have provided unpaid elder care in the past five years” and that number is expected to rise to about 49% by the year 2017. With so many family caregivers out there, especially with the incidences of Alzheimer’s and other dementia on the rise, we all hope that employers will be more inclined to help their employees. But discrimination does occur in the workplace in the form of: limited schedule flexibility, denied leave or time off, and even dismissal from ones job.
The Family Medical Leave Act (FMLA) protects some caregivers but is an imperfect protection that is not required of employers with fewer than 50 employees. Additionally, of those employers required to adhere to FMLA guidelines, the employee must have been with their company for at least twelve months and have worked at least 1,250 hours during the previous year. With no FMLA protection, your job is at risk – especially in an economy when so many other workers would be glad to put in the hours that you’re not able to fulfill.
A word to employers. I know that it’s hard to maintain success while some employees just aren’t pulling their weight. But I think you’ll agree that some of you need to be more sensitive to the struggles experienced by your caregiver employees – employees who have never let you down prior to this difficult time in their lives. These exhausted souls can’t tread water fast enough – won’t you help them? Please do what you can to make reasonable accommodations that will lessen this temporary turn of events in your employees’ lives.
Historically, it’s the adult children who move back into the parents’ home, oftentimes because of financial issues. Apparently that is no longer the sole definition of multi-generational living.
In a USA Today article, Who’s moving in? Adult kids, aging parents, Haya El Nasser writes, “(A)bout one in seven say they already have a ‘boomerang kid’ – an adult child who moves back home – or elderly parent living under their roof.”
This brings about two unexpected events:
The parents who enjoyed their empty nest and started to reestablish themselves as a couple, instead of just as parents, suddenly have an adult living with them who just happens to be the kid they gave birth to 30 years ago; or
The adult child who strove to establish his home with his spouse and their 2.5 kids suddenly have a parent living with them requiring just as much attention, if not more, than the young children they themselves brought into this world.
The USA Today article above focuses on a rising trend towards families deciding to purchase larger homes than they would have previously considered with the anticipation that it would be more economical to have other adult family members living in – and contributing to – the same household. Talk about a paradigm shift! Stephen Melman, director of economic services at the National Association of Home Builders says, “I remember when I was in college, no one wanted to be near their parents.” That thought certainly resonates with me. When I was single in my 20s and early 30s there was no such luxury of renting a place on my own and living-at-home was definitely not an option. At one time I had two roommates so all three of us shared the same bathroom, kitchen and common living space. Inconvenient and not as private as we would have liked? Certainly – but the only way to afford housing and have the ability to put away money for our future was to split costs with other like-minded adults.
A Pew Research report earlier this year showed that “the share of Americans living in multi-generational households is at its highest since the 1950s.” OMG! As a Baby Boomer who was born in 1953, I just have to repeat, “OMG!!!!!”
My focus today is on the caregiving issue – that adult children and/or Baby Boomers find themselves with the added responsibility as caregiver to a loved one. In my article Start your retirement – start your job as a family caregiver I address the caregiving aspect of Baby Boomer retirement which sometimes evolves into multi-generational living. Our quality of life definition tends to change as family caregiving is added to our lives. But it’s a fact of life for many of us and one that very few can escape. But herein lies the problem…
Most of us aren’t prepared for that eventuality. Those of us who are counting the days until retirement kid ourselves into believing that caregiving happens to others, not to us. And our adult children find it difficult to wrap their minds around that type of living scenario whilst in the midst of their hectic career development and ever-changing family dynamics.
So what happens? We find ourselves in an emergent situation that requires immediate action that may not be well-thought out because we don’t have the time to make a well-informed decision. We all know that the worse time to make a life-changing decision is in an emergency. There is a wealth of information available at our fingertips – the worldwide web is replete with helpful resources. Even this website has many articles written on the subject. As you browse through this website’s categories, be sure to enter a search term in the “Search My Site” box located at the right-hand side of each content page.
I’m not suggesting that you finalize plans that might not be implemented until many years down the road – or at all. What I am suggesting, however, is that we all become aware that a) these issues exist and could very well happen in our own lives; and b) we’re going to do what we can now to make wise decisions later.
The attached link, written by a blogger in Singapore, describes his experience as a cab driver when he picked up a woman with dementia who needed to get from Point A to Point B but who lacked the cognitive capacity to effectively do so.
Personally, I think he excelled at compassion and even though he feels he could have done more, I respect him for what he did do. We don’t want to entertain the thought of someone who might have taken advantage of this woman but there are many who would have looked at this situation as an opportunity to exploit her vulnerability.
I congratulate you, Lim James, for showing all of us that goodness exists, and it exists in your soul.
I strongly encourage you to read the above article. Too often physicians with insufficient training on elder-health issues dismiss the early signs of Alzheimer’s or other dementia as simply being age-related developments. Doing so presents the risk of missing the small window of opportunity in which to treat cognitive issues early on, rather than when they have fully taken up residence in a patient.
Sure, there’s nothing yet that prevents or cures the disease, but being able to manage the symptoms early on certainly adds to the quality of life that both the patient, and their loved ones, seek to experience.
For those of you who have taken on the role of advocating for your loved one: when you escort your loved one with early memory loss or confusion to the doctor’s office, do not back down when he/she concludes the symptoms are to be expected due to advancing age. NO! Those symptoms could very well be indicative of disease-related dementia, OR the symptoms could be caused by medication side-effects (blood pressure medication, seizure medication and the like) or other medical conditions, such as urinary tract infection (UTI.)
It’s all about advocacy. Do you go the easy route and take the doctor’s word for it, or do you push for worthwhile diagnostics to rule out any other serious or life-changing causes?
At a certain stage during the course of Alzheimer’s or other dementia, a person can exhibit exit-seeking behavior. It is believed that the person exhibiting this behavior is actually trying to get home, or back to a familiar place, or even seeking a feeling of comfort rather than simply trying to escape from their current location.
This “exiting” can take place just about anywhere, even at the person’s own home – resulting in a dangerous scenario where a wandering vulnerable person could easily fall into any number of horrific situations because of their inability to get back to the safety of their home (be it a personal residence or a long-term care facility.) Exiting behavior also takes place in public places such as grocery stores or shopping malls, movie theaters, airports, and yes, even airplanes at 35,000 feet above the ground. This latter scenario happened on a recent flight I took from Dulles International Airport (DC area) to Seattle International Airport (Seattle, Washington.)
Just a half hour into our five-plus hour flight, a female passenger of approximately 75 years of age became very agitated during our ascent and before the fasten seat belt sign was switched off, she climbed over the passengers in her row, carry-on in hand, screaming all the way to the back of the plane from Row 34. I was seated in Row 35. “Wow, she must really have to use the bathroom!” I thought. A flight attendant tried to get the passenger re-situated in her seat to no avail. Complicating matters was the fact that the passenger was from another geographical continent and not only did she not speak or understand English, it was determined that other passengers who had flown with her from that same continent (not any relation or connection to her) also could not understand a word that she said. In essence, she was speaking gibberish. That was the first sign to myself and the flight attendants, that a) this woman was flying alone; b) she was in severe distress; and c) she most likely had some sort of dementia and was trying to exit her environment. Not an easy task, nor one any of the United Airline employees were about to allow. Read the rest of this entry »
My oh, my – such a difficult subject to broach with a family member when you know that he should put down the car keys and let others do the driving for him. The article linked above from NBC Nightly News is a good source of tips on how to handle this very familiar problem. I address this issue in my article: Driving with dementia: the dangers of denial. Although dementia is usually one of the most talked about reasons for taking away someone’s car keys, there are other reasons that are just as important that must not be ignored:
Age-related slow reaction times;
Medications that might cause dizziness and/or slow reaction time; and
Impaired eyesight and hearing.
Not wanting to hurt a loved one’s feelings should not be the reason to avoid this subject matter. Let’s face it, your loved one’s safety and the safety of absolutely everyone else is at stake here. There are already so many dangers on the road with drivers talking or texting on their cellphones, driving under the influence of alcohol or drugs, doing any number of distracting functions such as eating, personal grooming, changing a tune on your I-Pod, or being distracted by children or dogs in the back seat. Now add someone who is impaired by age or cognitive disease and the risks to others increases greatly.
If you or a loved one are facing this important and difficult step, please read the attached NBC article linked above and also take the time to look at my article, Driving with dementia: the dangers of denial that provides encouragement for how you might take care of this very important matter of safety.
In my opinion, the article linked above paints a clear picture of what the 47 percent might encompass. As with any situation for which we have little understanding or exposure, it’s healthy to see what the flesh and blood of the situation equates to – put a face on it.
Making a generalization that those who don’t pay federal taxes are taking unfair advantage of government handouts seems so inaccurate – I guess that’s what generalizations are: inaccurate attempts (oversimplifications) to state something about which we have no understanding. Just about everyone with whom I associate has gone through difficult times – financial and otherwise – at some time in their lives. Not everyone stays hungry and without the means to get by – as if they would choose to remain that way year after year after year.
The above article introduces us to
a 76-year old woman who works but is not able to pay her electricity bill;
a well-dressed man with a Master’s degree in engineering who needs help with his rent who was very embarrassed to ask for help; and
a woman battling cancer and diabetes at risk of losing a leg.
These individuals are not second-class citizens just because they’re going through a rough patch in life. I don’t consider myself a bad person because in the mid-1980’s I was laid off from my job as a program director at a cable TV company and had to collect unemployment insurance while looking for a replacement job. That time was temporary – as many trying times in life are.
Does this mean that everyone in need of a handout represents the “better angels of our culture?” No, there will always be those who try to bilk the system – heck, the big bankers and financiers did that very recently – and arguably, still are – and they certainly weren’t dining at the downtown food kitchen or struggling to pay their utility bills. We might categorize them as second-class citizens because of their greediness, but I dare say they look vastly different from those portrayed so cavalierly in the political arena during this current election season.
The above video is amazingly dramatic and not just because it’s so well done and the music is so compelling. It’s dramatic because it speaks of facts about Alzheimer’s and other dementia that are hard to wrap your mind around.
Here’s one fact I’ll provide, and then I encourage you to watch this two minute video to increase your awareness of this insidious disease.
The Fact: there are 15 million caregivers currently living in America. If caregivers were the only residents in one of the states in the United States, they would completely populate the state of Illinois – the 5th largest state in the country.
Awareness is key – pass this link on to others so that greater attention is placed on this disease that is the ONLY cause of death among the top 10 causes of death in America without a way to prevent, cure, or even slow its progression.
I didn’t think I would write about this personal experience, but today I realized that in order to fully heal, I need to express myself.
So here I go.
(Photo credit: Wikipedia)
Five months ago, I made a well-thought out and measured decision to leave the religion of my birth. Let me make this perfectly clear: I left a religious organization. My faith is still intact.
I was quite active in the local-area church of that religion: I was a scripture reader; I trained other scripture readers; I started a volunteer chore ministry that served the members of that local church as well as the geographic community in which that church is located; and I contributed financially to both the local-area church and the “Mother” church.
The catalyst for my leaving the religion of my birth was the “Mother” church’s decision to encourage all local churches of that religion in Washington state to hold a political petition signing at each church service on a particular Sunday in April 2012. Each local church was given the option of whether or not to hold this particular petition signing; some churches opted out, many opted in. Therein lies part of the problem.
I firmly believe in the absolute separation of church and state. When I heard that this petition signing was to take place, I approached my local church and asked if they would be participating. “Yes” was their answer, and they did. The issue at hand for me is that once you bring politics into a church’s sanctuary – regardless of the political party, cause, or issue – you taint the worship space that was created for the express purpose of praising God, celebrating the rituals in which we find comfort, and building up the Body of believers who call that local church the home base for their faith.
My “beef” isn’t even with the local church I left. (As a matter of fact I met with the local church leadership to talk about my concerns and my intention to leave and we had a very thoughtful and respectful conversation.) My beef and major concern centers around the hierarchy of leadership that holds onto teachings that I have not supported for quite some time now. The petition signing was merely the catalyst for me to finally be true to myself and the faith in which I clothe myself.
Now the healing that I’m seeking – healing from an unfulfilled expectation. I cared deeply about many of the people with whom I worshiped and I thought the feeling was mutual. You see, after more than ten years of attendance and active participation, I had the expectation that someone would a) notice that I was no longer there; and b) care enough to get in touch with me. Five months after leaving the church I received an e-mail from someone asking if I had left the parish, because this person missed seeing me on Sundays. That e-mail made my day. That e-mail both made me grieve, and rejoice. Grieve – because only one person cared enough to reach out to me. Rejoice – because one person reached out to me and confirmed that I mattered.
The lesson in all of this for me is that it’s not the local church’s fault that I’m hurt from their lack of response to my absence. I erroneously placed my personal expectation onto others – those who didn’t know what I had hoped would happen. I’ve come to believe that “expectation” is simply a fantasy of a personal hope that we try to impose on other people and/or events.
In that respect, the phrase “unfulfilled expectation” is a contradiction in terms. Again, going with my definition of fantasy, the Merriam-Webster dictionary defines fantasy in this manner: the free play of creative imagination. The dictionary also provides an obsolete definition of fantasy as “hallucination.”
So there you have it. I hallucinated what I had wanted to take place – but it wasn’t fact.
Katie Couric is redesigning her news career with a daytime talk show; and Jeff Probst of the “Survivor” television series has done the same. I guess you don’t have to be a normal non-celebrity middle class person to be bored or unsatisfied with life to have an excuse to recreate yourself.
But I’m not the only one who is currently redefining or recreating ones life.
I am personally acquainted with a 79-year old woman, a 64-year old man, and a 63-year old, 59-year old, and 36-year old woman, who are actively pursuing a transition from one chapter of their lives to the next. Personally, I feel that such a pursuit is good for the psyche; it brings a fresh outlook on what we’re still able to accomplish, and, equally as important, might prove beneficial to others as we stretch our wings – and perhaps even our comfort zone – in our efforts to make the most of our talents.
Does this mean that if a person spends decades in the same career they are less evolved or community-focused?
Hell no. I happen to be married to a wonderful man who has been with the same company since he graduated from college more than 30 years ago, and not only is he doing all he can, and then some, in his career, he also reaches out to others for whom his other non-job skills – and there are many – can be used. And boy do we need those dedicated employees in this world who are not only committed to their chosen career path but who also defy the odds – and improve the economic forecast – by staying with the same employer. I’m glad some of you are doing that, and doing it so very well.
I think I can credit, and thank, my limited attention span for the catalyst that keeps me on the look out for that “something else” that might be out there for me to do. Fortunately, most of the reboots I’ve experienced have worked out for the better. Not all of them are money-makers, but I can honestly say that they have all had a more positive than negative impact on the world around me. I’m the only one who has to account for whether or not I’ve been a “good and faithful servant” of this life that I’ve been given and I’m committed to keep trying until I get it right.
I read in the Seattle Times newspaper recently that a dragonfly, in its nymph stage, lives in the water for up to four years while it is growing & developing. When it finally emerges from its skin, it only lives a few months.
I know there are other insects who have an even briefer adult life, but this substantial insect caught my attention for one specific reason – although its post-nymph life is brief, it goes for the gusto during its brief time on Planet Earth.
(Photo credit: Wikipedia)
It’s believed that dragonflies have existed on Earth for approximately 300 million years – wow! – that’s older than us humans!!! I guess they’ve had a great deal of time to learn how to make their individual lives count. As nymphs, growing & developing under water, a special appendage on their head helps them to spear their food – small fish, other insects, yum! When full grown and ready to emerge, the dragonfly climbs out of the water, sheds its skin, and waits for its wings to dry before getting down to business.
By the time their wings are developed, they are considered full-grown adults and have only a few weeks remaining of their lives. Their primary goal during this winged stage is mating – so when you see two dragonflies flying through the air attached to one another, it is almost always a male and female mating. I guess they are able to fly while “distracted” because they can see nearly 360 degrees around themselves at all times – no obstacle will get in the way of these industrious bugs! And I can’t help but state that they present an entirely new definition of the mile-high club.
But this article isn’t really about dragonflies and their mating-in-flight capabilities. It’s about how you and I choose to live our lives because in the grand-scheme of things, our life span is just as short as an insect’s, if not – relatively speaking – shorter.
Considering how old the world is, even if we live to be 100, it’s still a drop in the bucket compared to the years that have preceded us, and the infinity that will carry on after us.
I wrote two articles on this Blog site about making the most of our lives – especially as we near retirement. Retirement Planning – it’s not what you think; and Creating the next chapter of your life explore whether “the rest of our lives” post-retirement will bore us and benefit few; or excite us and benefit many. This topic interests me greatly because I witnessed first hand what an unplanned retirement can look like.
A few months into my father’s retirement, my mother started to complain about my dad’s inactivity – phew, not fun! Before long – and in the midst of great boredom on his part – my father got the hint, climbed off his golf cart, and pursued volunteer opportunities with AARP. You see, he realized within a few months of retirement that he wasn’t satisfied not contributing to the larger community around him. The long and the short of it is that both my mother and father eventually established a state-wide volunteer program to help the elderly and low-income individuals with their annual tax returns. My parents recruited other like-minded retirees, put them through training, and by the time of my parents’ real retirement, this tax-aide program had helped more than a million people in the course of 20 years.
But that was them. That’s what my parents could do and enjoyed doing. We have to discern what an appealing retirement looks like for us. I don’t begrudge anyone a relaxing and enjoyable retirement – I’m all for it – but let’s not waste our previous employment skills by putting them on hold as soon as we leave our J-O-B.
My husband surprised me the other day when he stated that he’s already thinking about what he’ll do when he retires – four years hence. I’m thrilled that he’s already considering his options, and who knows? Maybe we’ll team up and do something meaningful to both of us, just as my parents did many years ago.
A recent NBC Nightly News story focused on the role of caregiving as adult children take on the parental role vacated by their parents.
Imagine, if you can, handling all that you normally do in your hectic life and adding between 20 to 60 more hours to your workload. Haven’t arrived at that point yet? Of this potentiality you can be certain – all signs point to that being in your future. Whether your involvement is characterized by general care for an aging family member, or specialized care for a family member with cognitive decline, caregiving is most likely a task to which you have not devoted much attention.
It is said that 1,200 people per day are diagnosed with Alzheimer’s or other dementia. Let’s re-categorize that statistic: 1,200 caregivers are created every day.
The new ad campaign, a joint project between AARP and the Ad Council, was created to address the impact of family caregiving with the graying of the population. This ad campaign seeks to provide resources for those who are thrust into this role for which they are ill-prepared.
“Although they often don’t identify themselves as ‘caregivers,’ more than 42 million Americans perform some form of consistent care for older or impaired adult relatives or friends, according to a 2009 estimate. It can range from paying bills, to driving Mom to doctor appointments, to more hands-on care such as bathing, and even tasks once left to nurses such as the care of open wounds.”
Taking a walk with my wonderful Dad in 2007.
And as many of us who have been in that caregiving role can attest, ones’ active role goes on and on when behind-the-scenes caregiving occurs, dealing with finance and insurance issues and the like during our alleged “free” time; a time when others are settling down to watch their favorite TV show or to read a good book.
This extraordinary AARP/Ad Council project is broader than another effort that is part of the new National Alzheimer’s Plan that can be found on the federal government’s website, www.alzheimers.gov. But both of these projects address the loneliness inherent with the caregiving task when so many caregivers feel, and become, isolated and adrift in an ocean of frustration and despair.
FINALLY some resources are being directed to the tidal wave of caregiving issues that Baby Boomers face. It may be too little too late, but it’s more than has been available up to this point. My hope is that the generation in which our children live will have sufficient resources to deal with us Baby Boomers because if our children think this caregiving task is going to jump their generation, they’ve got another thing coming to them.
And I apologize ahead of time for what awaits you.
The attached article, from the magazine, Seattle Met, is a stellar example of a therapy that is not medicinal or chemical, nonetheless, it’s a therapy that works. Imagine that – and without drugs???
Frye Art Museum, Seattle, WA (Photo credit: Wikipedia)
Viewing art at a museum and painting to express oneself afterwards. What kind of wackadoodle therapy is that?
It is a very successful therapy – that’s what! Here: Now is an arts enrichment program developed in partnership with the Frye Museum, Elderwise, and the regional Alzheimer’s Association, in the greater Seattle, Washington area.
The above article focuses primarily on the younger onset Alzheimer’s disease scenario, highlighting the experiences of Cathie Cannon and her partner, Sharon Monaghan, the latter who was diagnosed with this life-changing disease. As the author of the article, Ann Hedreen, states
Art – looking at it, talking about, making it – is powerful medicine, one that gives Sharon a way, however fleeting, to live peacefully in the moment, no remembering required. Even in its very name, Here: Now is about living in the moment.
So I’m going to let you discover the healing power of art, as told by those who can explain it far better than I ever could: Cathie and her partner, Sharon.
This “exiting” can take place just about anywhere, even at the person’s own home – resulting in a dangerous scenario where a wandering vulnerable person could easily fall into any number of horrific situations because of their inability to get back to the safety of their home (be it a personal residence or a long-term care facility.) Exiting behavior also takes place in public places such as grocery stores or shopping malls, movie theaters, airports, and yes, even airplanes at 35,000 feet above the ground. This latter scenario happened on a recent flight I took from Dulles International Airport (DC area) to Seattle International Airport (Seattle, Washington.)
Living: the ultimate team sport 