Quality of Life
I Can’t Believe I Did That !!!!!!!!!
I Can’t Believe I Did That !!!!!!!!!.
One of my fellow Bloggers wrote a great article (above) to bring an explosively humorous end to my work week. Thank you for sharing your humiliation with the rest of us. Been there – done that myself – far too many times.
Speaking of which … my husband and I were in Home Depot last Sunday; me walking ahead of him as he pushed the shopping cart. A 30-something couple walked towards me, and then past me towards my husband, and oh my goodness … one of them must have not been able to hold in the flatulence one second longer. I wilted amongst the fumes – turned around to look at my husband and his face was twisted in a disgusted-looking, painful way, and he quickly slapped his hand over his nose. I said to him, “I know, right? Must have left a pile somewhere in this aisle!” then I continued walking onward only to discover that the fumes filled the length of that aisle. I started running in a vain attempt to escape the blanket of stinkyness, and soon thereafter, my husband could be seen running with his heavily loaded-down shopping cart making the same attempt at escape. (I know – we’re both quite juvenile.)
When we left the store, my husband was certain that someone must have been videotaping us and no doubt, we are now You Tube stars, gaining lots of followers around the world.
Being a caregiver or being cared for: there’s really no escape hatch.
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?
President Obama Says the “A” Word: Alzheimer’s
President Obama Says the “A” Word: Alzheimer’s.
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.
- $6 billion for cancer;
- $4 billion for heart disease;
- $3 billion for HIV/AIDS; but just
- $480 million for Alzheimer’s disease.
I’m not comfortable with those numbers – are you?
The first Valentine’s Day without your loved one.
The above article recounts the personal feelings of a blogger who experienced his first Valentine’s Day without his wife who died on July 4, 2012. For those of us not experiencing such a loss, we may too readily try to point out that this “holiday” is just a Hallmark greeting card day, or florists and chocolate manufactures making lots of money day. It’s more than that – especially when so many memories are tied to the event. Whenever a “first time without” comes around on the calendar, the dread leading up to that date can be very troublesome, as it was for this blogger.
I recently watched a show in which interior designer, Nate Berkus, said the following about the things we have in our lives:
The truth is – that things matter. They have to because they’re what we live with and touch each and every day.
They represent what we’ve seen, who we’ve loved, and where we hope to go next.
They remind us of the good times and the rough patches and everything in between that’s made us who we are.
Events, celebrations, and the like provide the same type of life-shaping experiences. That’s why today is far more than a commercial and financial windfall for the greeting card, floral, and chocolate industries. Without someone with whom to celebrate the focus of this day, it becomes a non-day from which you can not escape. Thank God for the memories, the photos, even the many things around the house that represent the touch and essence of our Valentine.
I interrupt your life for this brief message.
When was the last time you just soaked it all in? I’m not talking about soaking in the sun’s rays – hard to find in most places at this time of year anyway. And I’m not referring to settling your weary body down into a relaxing hot bath.
How about today, you decide to soak in all the good that is in your life?
But you say, “I have no time for that because the bad in my life far outweighs the good.” My response to that? Perhaps you need to even out the scales.
Right now, make a concerted effort to write down three things for which you can be grateful; things that encourage a smile on your face; things that make you forget – even for a second – all that weighs you down.
Now celebrate those three things by soaking in the feather light feeling they create. If that sensation is something you’d like to feel again, well – you’re in charge. Set aside time each day to allow the good to displace some of the bad.
If you celebrate even the smallest of good aspects of your life, you may discover that countless mini-parties await you. What have you got to lose?
The world as we know it – the good, the bad, the ugly.
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.
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.
Sometimes You Just Have to Laugh!
Sometimes You Just Have to Laugh!.
I think you’ll all agree that humor can be found in almost every situation in which we find ourselves. Even the distressing disease of dementia has its lighter moments. The article above, by fellow blogger Don Desonier, provides a moment he had with his wonderful wife Nancy. I think many of you will be able to visualize the scenario that this writer so adeptly describes.
Here’s a humorous story from my caregiving time with my father who died from Alzheimer’s complications in October 2007. On one of my visits to his assisted living facility in Oregon, he asked me to help him change his hearing aid batteries. So happy to have something to do that would benefit my father, I jumped at the opportunity to help him hear better – thereby greatly enhancing our conversational abilities.
He pulled out his hearing aids and I pulled the dead batteries out and placed them on the coffee table. I turned my back for a couple seconds and upon refocusing my attention, I saw that my father had put a dozen other batteries on the coffee table – MIXED IN with the two that no longer worked. Had my father not put all the batteries in a pile I might have been able to readily discern the two recently removed batteries. As it was, it took us forty-five minutes to test the batteries and as luck would have it, the used-up batteries were the last two we tested.
At least I got a laugh out of it – after the initial frustration – and dad seemed to get a kick out of the fact that I was giggling about the process. And now more than five years later – I can still reflect on that experience with a smile on my face.
The article above is from one of my favorite bloggers, Frangipani Singaporenicum. Her journey as a caregiver involves her mother. Her storytelling of what that involves is really quite genius.
This article addresses the question as to whether or not the person with dementia is the same person they were prior to onset of disease; and if they are not …
then who are they?
Once you’ve read her article I believe you’ll have a clearer perception of what dementia takes away – and leaves behind – during the progression of the disease.
Don’t Go It Alone! The Importance of Caregiver Support
Don’t Go It Alone! The Importance of Caregiver Support.
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.
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!
Getting caught in the crossfire of someone’s bad day.
Know Someone Dealing With a Loved One With Dementia? Think on These Words.
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 Gift that Keeps on Giving – until it’s no longer needed.
Rev. Dale Susan Edmonds answers your questions about caregiving.
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.
In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die. By now I may have lost some of you, but bear with me. There’s a reason why I’ve chosen to address this topic.
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?
Transitions in Dementia Caregiving.
Welcome to Catching Up to the Disease: Transitions in Dementia Caregiving.
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.
Living with Early-Onset Alzheimer’s disease.
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.
Your Grandparents are Cooler than you Think.
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.
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.
Grief: The First Times Without.
Grief: The First Times Without.
In the article linked above, a fellow blogger provides an exquisite sampling of the types of circumstances some life journeyers may be going through resultant from losses that have placed them in a difficult transitionary time in their lives.
Chances are all of us will experience more than one of the transitions that Don frames in this article that so delicately – and movingly – touches on the topic of grief and loss that occur when “first” occasions without someone come around on the calendar.
May all of you receive the comfort you need during the “first” times on your grief journey.
Right to Bear Arms vs Separation of Church and State.
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.
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.
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.
The Journey of Grief: A Personal Snapshot
The Journey of Grief: A Personal Snapshot.
Grief – when one experiences a loss, there is no way around this emotion. It has no clearly defined end. It manifests itself differently for every individual. The writer of the above article shares the personal side of how this emotion presented itself in his own life in this continuation of his series of articles on grief.
This “personal snapshot” is a follow up to his first article in the series that addressed an event in ones life for which everyone’s grieving experience takes on a slightly different character. I hope you’ll read the article attached above, and his previous article – also available on his website.
Capturing a moment, or two, with your loved one.
The attached article, written by a fellow blogger, needs no introduction other than for me to tell you that Margo beautifully describes a perfect evening with her hubby who was diagnosed with Alzheimer’s several years ago.
December Calendar “Celebrations.”
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)
- Dec. 3: International Day of Disabled Persons
- Dec. 5: Volunteer Day
- Dec. 7: Pearl Harbor Day – Remembrance Day
- Dec. 8: Hanukkah begins – through the 16th
- Dec. 10: Human Rights Day (UN) – adoption of the Universal Declaration of Human Rights
- Dec. 11: United Nations Children’s Fund (UNICEF) established
- Dec. 12: Bonza Bottler Day – an excuse to celebrate when the date and the monthly number are the same
- Dec. 13: Ice Cream and Violins Day – why the heck not?
- Dec. 14: NASCAR founded (1947); I had to add this one for my husband
- Dec. 15: Bill of Rights Day (US)
- Dec. 18: 13th Amendment (US) ratified abolishing slavery
- Dec. 21: Winter Solstice
- Dec. 24: Eggnog Day; Remember to Read the Instructions Night (seems appropriate as parents everywhere set up bicycles, toys, etc.)
- Dec. 25: Christmas Day
- Dec. 26: Boxing Day (Canada, UK); First Day of Kwanzaa
- Dec. 27: Howy Doody television show premieres on NBC – only Baby Boomers would know this one
- Dec. 28: First American test tube baby born (1981)
- Dec. 30: The Wonderful World of Disney television series is cancelled (1980) – again, a Baby Boomers staple way back when
- Dec. 31: New Years Eve – marking the end of one miserable year and the start of a better year; also, the Official end of WWII (1946).
Lighten up Mondays.
One evening, a family brought their frail, elderly mother to a nursing home and left her, knowing that after all the research they did to find a great place, she would be well cared for.
The next morning, the nurses bathed her, fed her a tasty breakfast of an omelet, sausages, and pancakes, and set her in a chair at a window overlooking a lovely flower garden.
She seemed okay, but after a while, she slowly started to lean over sideways in her chair. Two very attentive nurses immediately rushed to her side to catch her and straighten her up. Again, she seemed okay but after a while, she started to tilt to the other side. The nurses rushed back, and once more moved her upright. This went on all morning.
Later the family arrived to see how their mother was adjusting to her new home.
“So Ma, how is it here? Are they treating you alright?”
“It’s pretty nice here,” she replied, “except they won’t let me fart!”
The glaring difference between Ann Coulter & John Franklin Stephens.
An Open Letter to Ann Coulter.
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.
Caregiving: Grief, Guilt, Exhaustion, and Discrimination.
Managing Caregiver Guilt, Grief and Exhaustion – AARP.
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.
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.
The Experience of Loss and Grief.
Divorce As An Experience of Loss and Grief.
Sit down some day and take the time to write down as many experiences of loss that you can recall during your lifetime. Quite naturally, you will list times of grief resultant from a death in the family, grave illness, and the like. But there are other losses that we experience that can have just as much of an impact on our lives. The end of a marriage is one of those.
The article linked above does a great job at shining the spotlight on the loss that is experienced when a marriage ends through divorce. Even if both parties to the marriage come to a mutual decision on the matter, the parties oftentimes enter a period of mourning. Understandably they feel a certain sense of relief at the conclusion of the divorce process, but a feeling of loss becomes a very unexpected part of their lives going forward.
My thanks to this Blogger for giving couples permission to acknowledge the loss they are feeling at the dissolution of their marriage – even one for which they were both on board.
Weekly Photo Challenge: Thankful.
My fellow blogger in Singapore posted the photo linked above and also wrote a poem to go with it.
Very well done if you ask me. I hope y’all check it out.
New roommate paradigm: adult children & their parents.
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.
When the Mind Says Goodbye – Alzheimer’s Reading Room.
When the Mind Says Goodbye is a thoroughly touching mini-video (less than 5 minutes long with beautiful music accompaniment) chronicling a married couple’s journey as best friends in early childhood, all the way through their marriage – currently a more than 87 year-long relationship.
This couple, George and Adriana Cuevas, show us how a lack of words does not have to limit ones ability to relate to, and comfort, a loved one. I hope you will take the time to observe this loving couple as they walk through the hallways of Adriana’s memory care unit, and as they sit side-by-side with only touch and eye contact as a communicator.
It seems to work for them. How lovely that their marriage commitment lives on, even when the mind has already said goodbye.
November calendar “celebrations.”
Get ready everyone – there are so many worthy-of-mentioning “holidays” in November, you’ll be blown away!
- Peanut Butter Lovers Month
- Alzheimer’s Disease Awareness Month www.alz.org
- National Hospice Month www.nhpco.org
- National Adoption Awareness Month – my favorite because both my sister, and my niece, are adopted and my life is better as a result! www.adoptioncouncil.org.
Some of the daily celebrations:
1st: Teach a Friend to Homebrew Day
2nd: Plan Your Epitaph Day – would you trust just anyone to tell the truth?
6th: Marooned without a Compass Day – a/k/a Election Day
7th: Bittersweet Chocolate with Almonds Day
8th: Cook Something Bold Day (well, it is Peanut Butter Lovers Month!!!
11th: Veterans Day – thank you every Vet of past & present military conflicts!!!
12th: National Pizza with the Works Except Anchovies Day
13th: World Kindness Day – pass it forward everyone!!!
15th: Clean Your Refrigerator Day and America Recycles Day – it figures.
15th: Great American Smokeout – see November 19th if participating
17th: National Adoption Day – I love you Mary and Kristina!!!
19th: Have a Bad Day Day – see November 15th
22nd: Thanksgiving, followed by…
23rd: Sinkie Day – casual eating while standing at your sink www.sinkie.com
23rd: Black Friday – the busiest shopping day of the Holiday season and Buy Nothing Day (I don’t make up the rules)
26th: Shopping Reminder Day – do we really need this reminder?
30th: Stay at Home Because You’re Well Day – because it’s more fun than staying home when you’re sick!
Treatment For Alzheimer’s Should Start Years Before Disease Sets In: NPR
Treatment For Alzheimer’s Should Start Years Before Disease Sets In: NPR.
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?
Health Care Reform and Medicare Myths vs. Facts – AARP
Health Care Reform and Medicare Myths vs. Facts – AARP.
During this highly contentious and rude political season, it’s really difficult to discern fact from fiction. Oftentimes we get caught up in the rhetoric spoken by Talking Heads and dismiss what we’re hearing based on which Talking Head is doing the talking.
For the most part, I’ve trusted what the AARP has put out regarding issues and candidates over the years so I felt fairly confident in posting this article.
If you want clarification about the following myths, please take the time to read the above link.
Myth 1: The new law cuts Medicare drastically, so I won’t be able to get quality health care;
Myth 2: I’ve heard that Medicare Advantage plans will be cut or taken away;
Myth 3: I’ll have to wait longer to see my doctor – or I won’t be able to see my doctor at all;
Myth 4: If I have Medicare, I will need to get more or different insurance;
Myth 5: The new law “raids Medicare of $716 billion”;
Myth 6: The law is going to bankrupt America;
Myth 7: The new law will drive up premiums astronomically;
Myth 8: If I can’t afford to buy health insurance, I’ll be taxed – or worse;
Myth 9: I’m a small-business owner and I’ll pay big fines if I don’t provide health insurance to my employees;
Myth 10: The Affordable Care Act (ACA) basically turns our health care system into universal health care. So now some government bureaucrat will decide how and when I get treated;
Myth 11: If my state doesn’t set up an insurance exchange, I can’t get health coverage.
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