This Blogger, Richard Kenny, really has a way with words as he describes the challenges – and sometimes the joys – of his caregiving role as a son to his mother who has Alzheimer’s and to his father who struggles to be the spouse of a wife with Alzheimer’s.
Very much worth the read – and I don’t just mean this one article. Many of Richard Kenny’s observations and musings so clearly reflect his day-t0-day frustrations as well as his somewhat new found ability to adapt to every unforeseen circumstance.
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.
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.
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!
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?
This article, written by a fellow blogger, is beautifully descriptive and paints a clear picture – not just of the visual scene – but also of the emotions that exist in those who step into the world of their loved one with Alzheimer’s and other dementia.
The two poignant themes that resonate with me are: the development of resident boyfriend/girlfriend relationships within a memory care community; and the wonderful interaction between a great-grandson and his great-grandpa with cognitive difficulties.
I honor this blog author and her family for choosing to integrate a youngster into what could be a scary or challenging environment for a child. One of my articles, “Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia,” addresses the difficulties that families oftentimes experience in long-term care (LTC) settings. I can see that this family already figured out how to soften the hard edges to make the visiting experience beneficial to all.
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.
For those of you who have not experienced the stresses of caregiving, or being the point-person for a loved one with dementia or other debilitating disease – please read the above-linked article. It will give you a wee taste of:
a) the toll that caregiving takes on loved ones;
b) the toll of being a spouse with someone with dementia; and
c) the extreme frustration of trying to communicate with professionals while coordinating care for your loved one.
Please read this article – it will give you a healthy respect for your coworker, neighbor, family member – who is on duty 24/7 with caregiving tasks. Whether the caregiver is performing these tasks long-distance, as was the case for me in relation to my father’s care, or performing them on-site, the task is monumental and deserves a great amount of respect and understanding.
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 »
I know you’re accustomed to getting a joke from me on Lighten Up Mondays but I just had to give you a Mid-Week Funny Break that I thought you would enjoy.
A family who lived deep in the woods had no electricity in their home. The wife was about to have her first child, so the father hurried to find a doctor. At nightfall, the doctor asked the man to bring the lantern. After their baby girl was delivered, the man put the lantern back on the table.
Suddenly the doctor said, “Hurry, bring the lantern back!” and the man complied.
Another baby girl was delivered, and the man returned the lantern to the table.
“Quick!” said the doctor. “Bring the light back!”
“Doc,” said the man, “you don’t think they”re attracted to the light do you?”
Thanks are due to the author of this article, linked above, who provides a list of movies with an Alzheimer’s or other dementia story line. How timely, as my husband and I were discussing last night how a few of the novels we’ve read recently have an Alzheimer’s story weaved through the book.
I told my husband that this seeming anomaly is not surprising due to the pervasiveness of the disease in so many households throughout the world. In my family, my father died from Alzheimer’s complications in 2007, and my sister-in-law died at the age of 69 from mixed dementia. I know there are many of you who at the very least know of someone affected by the disease.
A week later, the Rolls driver passes the same MG Midget, which is parked on the side of the road – back windows fogged up and steam pouring out. The arrogant driver pulls over, gets out of the Rolls and pounds on the Midget’s back window until the driver sticks his head out.
“I want you to know that I had a double bed installed,” brags the Rolls driver.
The Midget driver is unimpressed. “You got me out of the shower to tell me that?”
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.
b) know that she is affectionately called “The Divine Miss M.”
It’s comforting to know that us normal Baby Boomers aren’t the only ones getting older. Even world-renowned actors and singers fall victim to the passage of time. Ms. Midler turns 67-years old on December 1, 2012, and I have to say that she looks fabulous in the October/November 2012 issue of AARP Magazine! Let me provide some additional Baby Boomers that should ring a bell with you:
Tom Cruise 50-years old;
Madonna 54-years old;
Jay Leno 62-years old;
Meryl Streep 63-years old;
Cher 66-years old; and
Dustin Hoffman and Warren Beatty 75-years old.
In the article linked above, Ms. Midler mentions that she came to the realization that, “Life is not your personal express lane…It doesn’t all have to be about me!” She also talks about dreams, destiny and deciding what matters. I like that last point – deciding what matters – because oftentimes I find myself sweating the small stuff and you know what they say, “it’s all small stuff.”
Without a doubt, there are well-noted differences between men and women:
A husband, proving to his wife that women talk more than men, showed her a study that indicated that men use on average only 15,000 words a day, whereas women use 30,000 words a day.
“Well,” she replied, “that’s because women have to repeat everything they say when they’re talking to men.”
“What?” he said.
And another one:
A man asked his wife, “What would you most like for your birthday?” She said, “Oh, I’d love to be ten again.”
He came up with a plan, and on the morning of her birthday he took her to a theme park. They rode every ride in the park together.
Lunchtime soon came, so into McDonald’s they went where she was given a Big Mac with french fries and a milkshake. After lunch, he took her to a movie theater to watch the latest movie for kids – complete with popcorn and soda.
At last she staggered home with her husband and collapsed into bed. Her husband leaned over and asked,
“So, sweetheart, what was it like being ten again? She looked at him and said quietly, “Actually, I meant the dress size.”
A 2012 issue of AARP The Magazine contained an exceptional and gritty article about caregiving. The focus is primarily on the role a spouse plays in taking care of a dying spouse – in this case, a wife with ovarian cancer – but the caregiver may also be attending to an ailing spouse or parent with a debilitating disease such as Alzheimer’s or other dementia.
In the article linked above, Bill Newcott discusses how he hunkered down and tried to fix what ailed his wife. The first paragraph of the article will grab you:
It’s the one vow that can really come back and bite you in the butt: “…in sickness and in health.” On your wedding day the phrase conjures up visions of tiptoeing into a sun-drenched bedroom with lunch on a tray for your wife…What you don’t expect it to mean is crouching in the harsh fluorescent glare of a hospital treatment room and holding her head to yours, trying not to faint as a technician inserts a large needle between her ribs to suction two liters of fluid from her lungs.”
The role of a caregiver is one that not many will be able to avoid. Currently across America 43.5 million people are caring for a loved one who is 50 years or older. I’ve done it. My brother’s done it. Chances are, you’re doing it too.
AARP Caregiving Resource Center is a magnificent tool for all of you who are involved in caregiving. If you’re sitting there saying you don’t have time to check out this caregiving resource, you need it more than you can imagine.
Please start taking care of yourself and check out the resources that have been developed just for you.
This is a well-written piece from my local newspaper, the Seattle Times. There’s a similar article in a recent Newsweek issue entitled American Women Have It Wrong or “Why women should stop trying to be perfect” that discusses the struggle in which many of us women find ourselves – regardless of the generation – thinking we can do it all, trying to do so, and paying the price.
Both articles are worth the read and at the very least will provide great dinner-table conversation opportunities.
The young woman sat in her stalled car, waiting for help. Finally two men walked up to her.
“I’m out of gas,” she purred. “Could you push me to a service station?”
They readily put their muscles to the car and rolled it several blocks. After a while, one of the men looked up, exhausted, to see that they had just passed a filling station.
(Photo credit: Wikipedia)
“How come you didn’t turn in?” he yelled.
“Oh, I never go there,” the woman shouted back. “They don’t have full service.”
And here’s a Lighten up Mondays bonus:
What an automated society we live in. Have you ever noticed that when a traffic signal turns green, it automatically activates the horn of the car behind you?
The start of October is fast approaching so it’s time to see what is in store for us. I have many October occasions to tell you about in this posting, starting with those somewhat unknown ones associated in general with the month of October:
Adopt a shelter dog month
Clergy appreciation month
Eat country ham month
Cookie Month
National popcorn popping month
National vegetarian month
National pizza month and, appropriately
Sarcastic Month
Now a few day-specific “celebrations:”
October 2: National custodial worker day
October 2: Name your car/automobile day
October 3: Virus appreciation day (Sickness virus or computer virus????)
October 5: Do something nice day
October 7: Bald and free day
October 7: World smile day
October 9: Moldy cheese day (I guess this could also be a co-celebration of Clean out the fridge day?)
October 12: Moment of frustration day
October 13: International skeptics day (I don’t believe it)
October 17: Wear something gaudy day
October 19: Evaluate your life day
October 22: National nut day (the edible or the friend-type?)
October 27: Make a difference day
October 30: National candy corn day
October 31: Increase your psychic powers day (I bet you already knew that)
There were so many I could have posted but I just put a few out there, hoping that you have more to add.
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.
When the farmer arrived at the obedience school to pick up his newly trained bird dog, he asked the instructor for a demonstration. The two men and the dog went to a nearby field where the dog immediately pointed to a clump of brush, then rolled over twice.
“There are two birds in there,” the instructor said, and sure enough, two birds were flushed. A minute later, the dog pointed to another bunch of bushes, then rolled over five times.
“There are five birds in there,” the instructor noted, and indeed five birds were driven from the brush. Then the dog pointed to a third clump. The dog began to whine and run in circles until he found a stick, which he shook mightily and dropped at the two men’s feet.
“And in that clump of brush there,” the proud instructor concluded, “there are more birds than you can shake a stick at!”
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.
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.)
In the article linked above, Bill Newcott discusses how he hunkered down and tried to fix what ailed his wife. The first paragraph of the article will grab you:
Living: the ultimate team sport 