Quality of Life
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!
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?
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.
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 »
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.
You know you’re a Baby Boomer if you:
a) know who Bette Midler is; and
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.”
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.
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 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.
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 congratulate Chris MacLellan, the Blogger whose article is linked above, for coming to the realization that:
- caregiving is a noble and worthwhile job; and
- caregiving can be bad for one’s health.
All of us at one time or another have turned the focus away from our own well-being onto that of others to the detriment of our emotional and physical health. That doesn’t mean that we shouldn’t attend to the needs of others – we must if we’re to be a supportive society – but it’s important to be aware of what we personally need in order to remain healthy. It’s a difficult balance to reach, but it can be done.
My article, “Caregiver: put on your oxygen mask first” addresses the mistaken notion that we can do it all. We can’t. Our reserves will always run low and our fuel tank will always near empty unless we feed ourselves with that which sustains us. Chris discovered what he needed to do. I hope we all come up with the winning formula that allows us to take care of ourselves while we take care of others.
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.
In my article, “Creating the next chapter of your life” I focus on the tendency of some of us to seek new ways in which to express ourselves and/or additional ways in which to make an impact on our small portion of the world. This is certainly a topic that rarely leaves my thought process as witnessed by some of the other articles I’ve written, including: “Dragonfly: a well-lived brief lifetime,” and “Voices of the Bored Retirees.”
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.
A full-page newspaper ad for hearing aids, walkers, and safe bathtubs drew my attention the other morning:
“Seniors fear loss of independence more than death.”
I agree with that catch phrase, even though the final act of death brings its own fear level centered around how it will occur or whether or not it will be painful. But the loss of independence creates greater fear in me because of what it could mean:
- perhaps having to move out of my private residence;
- having my car keys taken away from me and being reliant on others for all of my transportation needs;
- being told what to wear, what and when to eat, and when to go to bed;
- not being able to bathe privately; reliant on someone else to make sure I get the job done right;
- speaking of which, needing assistance on the toilet OR having an alternate means of evacuating my bowels – ugh!;
- you name it – anything for which I am reliant, dependent, or beholden to someone else, scares me half to – well – death!
But maybe that’s just me. Maybe I’m super sensitive to this issue because of my work with vulnerable adults in long-term care facilities. So I asked friends, family, and others with whom I’m acquainted what stands out as their greatest fear in their Baby Boomer years. Here is a summary of numerous responses to my query:
- loss of independence which oftentimes involves chronic illness and/or dementia that drains the household finances;
- loss of independence resultant from dementia as it seems to be prevalent in so many families;
- loss of independence thereby putting the burden of care on my spouse;
- loss of mobility;
I couldn’t resist listing the last response because it made me laugh while contemplating a subject matter that brings little humor to the table.
While taking a walk with a neighbor the other day, he concurred with the above, also adding that if a person had unlimited finances, loss of independence wouldn’t hurt as much: use of your own private driver, 24/7 caregiving in your own home, the best Chef money could buy so you’re not relegated to institutional “cuisine.” But you know, I’m not so sure that being able to afford all of the above would make me feel less dependent upon others than if I had a standard of living like most everyone else. Sure, the amenities are better, but the underlying cause for needing those amenities remains the same – the inability to do things for myself.
Now that we’ve all agreed that living an independent life is very precious to us – I know we understand more clearly why our parents or other loved ones fought the aging process every step of the way. I thought I was very empathetic to my father when he had to surrender his car keys. But now that I’m a wee bit older than I was at that time, I’m thinking I had no inkling of what my father went through as little by little he lost the independence he had enjoyed for eighty-some years.
But how can we prepare so as to avoid a complete loss of independence?
Well, if you find the magic formula, please let us all know. As for me and my household, I’m concentrating on the here and now in preparation for the future. Here’s my contribution:
- Exercise like your life depends upon it – because it does. That doesn’t equate to running marathons or riding the Tour de France, rather, it’s participating in a variety of exercise options to which you know you can commit. What works for you – not what everyone else is doing.
- Enjoy the food you eat but don’t be addicted to it. My husband and I have dessert every night and we use butter instead of margarine when we cook. Those are luxuries that we decided to enjoy while making sure that the rest of our diet is balanced and more healthy than not.
- Speaking of balanced, we love our wine, so nightly, we enjoy a glass during those post-workday (and post-exercise) moments while we catch up on our respective days. Oh, and we also enjoy another glass as it goes so wonderfully with dinner, don’t you think?
- Use your brain in ways that you don’t use it while at work. There’s still no fool-proof method of preventing Alzheimer’s or other dementia, but you’ll feel better about yourself if you continue to challenge what you know – and what you don’t know.
- Seek peace amongst the chaos. In my article, Where do you find peace?, I explore both how to find peace, and how to keep that peace from slipping away. Rather than repeat what I previously said, I hope you’ll find time to read my “peaceful” article.
Now it’s your turn. What are you doing to avoid what many of us fear the most? I know many Baby Boomers would benefit from hearing what you have to say. We’re all in this together – regardless of how far from each other we live – so let’s work together towards attaining the goal of remaining independent as long as we possibly can.
WHAT you say? It’s not Spring!!! Well, in Australia, September 1st is the first day of Spring so I’ve connected an article from a fellow Blogger in Australia to illustrate her thoughts on new seasons being a time for change – hopefully for the better! I hope you enjoy, I know I did.
I should have posted this earlier than today, but I hope anyone needing this valuable resource – and it’s FREE today Sunday, August 26th!!!!! – will be able to take advantage of it. I know I will.
Thank you, Kelli, for being generous with this offering.
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.
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.
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???
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.
Your unemployment status?
Your, ___________ fill in the blank?
I learned something today for the umpteenth time and it came from someone who died two days ago at the age of 54 as a result of a 14-year battle with benign, but aggressive, meningioma brain tumors. Kathi Goertzen underwent numerous surgeries; endured countless chemotherapy and radiation treatments; and sought out additional therapies in other countries. But these tumors mercilessly came back again, and again, and again. Nerves in her face were destroyed making it difficult for her to speak as clearly as she wished. Similar nerve impairment gradually affected her ability to swallow, and therefore, eat. And what makes all of those symptoms more notable, is that Kathi was the consummate news anchor at a Seattle ABC affiliate, Komo4 News. Kathi was on camera for over thirty years and even when she was no longer able to sit at the anchor desk, Kathi powered through as a field reporter both in the United States and abroad.
Giving up was not in Kathi Goertzen’s DNA. It became obvious to all of us – and I never personally met her, she was simply one of the news anchors I admired the most – that Kathi virtually defined the word “tenacious.” Throughout the years, Ms. Goertzen spent countless days in the intensive care unit (ICU) of local hospitals with her husband, two daughters, parents & siblings, and her Komo4 News family standing by her as the most supportive cheerleading team of its kind. And once she got over that bump in the road, she carried on in her media career, and as an extraordinary wife and mother – the latter which she considered her most important roles in life. A recent video tribute to Kathi, which can be found at the Komo4 News link, shows interviews with Kathi in which she said that she didn’t want people to feel sorry for her; she didn’t want all the attention that this unfortunate condition drew to her. And then there was this statement, paraphrased from the video tribute:
These tumors don’t define me. I won’t let them!
I immediately thought of the many times I let hardships and circumstances define who I am. Oh, it’s so easy to give in to the tendency to feel sorry for ourselves isn’t it? To pay more attention to the bad than the good. It’s scandalous to think that in my several decades of life I have given the hardship (whether it be chronic pain, relationships, job struggles and the like) the upper hand, thereby giving power to that which should have never been given purchase in my life.
Thank you Kathi for getting through to me on this very important issue: circumstances don’t define me, I’ve only ALLOWED them to do so.
Kathi Goertzen Foundation raises research funds to find cures for brain cancers and tumors. .
The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss. I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.
The author, Pauline Boss, explains it this way: when a loved one dies, we mourn the loss; we take comfort in the rituals that mark the passing, and we turn to those around us for support. That doesn’t happen when a loved one is still alive, but the losing occurs nonetheless. And this period of loss may go on for years prior to the spouse’s final departure through death.
One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.” Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia. But if the “surviving spouse” is able to draw on the memories of their marriage, they find themselves able to love their spouse regardless of the disease. Unfortunately, the memories remembered are no longer shared memories; joint reminiscing no longer occurs. Your wedding anniversary passes without any acknowledgement by your spouse, and although that’s just one of the burdens during this long period of loss, it’s a difficult one to bear.
Caregiving is a difficult, 24/7 task. I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.
How do you define using your time in a meaningful way? If you’re getting ready for retirement – or are already retired – how are you going to spend those 40+ hours you previously filled at your job? “That’s easy!”, you say. “I’m gonna do whatever I want to do, whenever I want to do it: sleep in, read, play golf, travel; I’ll have no problem filling in the time!”
Now fast forward a year or two: you’re bored; your spouse is sick of you just hanging around the house; you’re feeling like there’s something more you could be doing; and even with doing whatever you’ve wanted to do, something’s missing. You wish there was more to this long sought after retirement phase of your life.
You’re not alone. The founding Director of the Stanford Center on Longevity, Laura L. Carstensen, correctly states in a recent AARP article, that “people are happiest when they feel embedded in something larger than themselves.” As we all know, we are living longer. In order to make good use of these added years, we need to ask ourselves what we can offer others in these bonus years of our lives. Should we continue in what might be our restricted scope of the past: getting by, doing what we can for ourselves and our family, but rarely reaching out beyond that confined scope? If you feel as I do, that’s not nearly satisfying enough.
What should our lives look like now that most people spend as many years as “old people” as they do rearing children?
How should societies function when more people are over 60 than under 15?
Ms. Carstensen is certain that today’s generations of older people will set the course for decades to come and that “change will happen, one person at a time.” I personally think that too often we think that any “doing” that we do must be grandiose in scale; or remarkable and newsworthy in order to be worthwhile. If I felt that way, I don’t think I’d even make an effort to give of my skills, my time and my passion to my community. Why bother? It won’t do any good, right? WRONG!
“If every person over 50 makes a single contribution, the world could be improved immeasurably.”
Think about it: us Baby Boomers have a history of life skills that can benefit so many! How sad it would be if the engineer, the lawyer, the CPA, the household family manager, the medical professional, and other highly skilled people put those skills on the shelf, never to be used again? What a waste! I’m not saying you continue to be that engineer, lawyer, and the like in your retirement. What I am saying, however, is that your past experience, regardless of its nature, can be used for the good of others but perhaps reshaped into a different form.
The bulk of my employment experience has been in the legal field and the senior housing industry, but at this stage of my life I’m not specifically involved in being a paralegal, or a senior housing manager. What I am doing, however, is combining those skills and directing them towards areas for which I am very compassionate, e.g. advocacy for older adults, and counsel for those taking care of a loved one with dementia. You too can contribute to your local community by applying your skills in ways that benefit others and are meaningful to you. I would be of no use to anyone if I didn’t believe my personal Baby Boomer motto: Committed to strengthening my community one person at a time – not one society at a time; not one State at a time, and certainly not the world. But I can motivate myself to strengthen my community one person at a time.
At what do you excel and what do you like to do? As an older adult, perhaps retired, you now have the luxury of doing what you LIKE and WANT to do, not just what brings home steady income and puts food on the table. Whoo hoo! What a luxury!!!
LET’S TALK ABOUT THIS SOME MORE:
What are you doing now to plan for a satisfactory remainder of your life?
How are others currently benefiting from your knowledge-base and how did you find the new venue in which to share your knowledge?
If you’re retired: How satisfied are you in this stage of your life? If you’re satisfied: why? If you’re not satisfied: why not?
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
The local caregiver.
Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.
Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.
At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.
Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.
Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life. No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.
The long-distance caregiver.
My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.
I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience. I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.
As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be. Cut yourself some slack and don’t be so hard on yourself.
Do your best – that’s all that is required.
My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support. When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.
CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.
Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing. Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance. Now is the time to be very transparent with them and tell them what you need.
DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.
There is no shame in inviting yourself to dinner. If these are true friends/acquaintances of yours, they will welcome you into their home. Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis. Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so. Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.
ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!
I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs. Let’s look at the difference between the following offers of assistance.
- “Hey Sam, call me if you ever need some help.”
- “Hey Sam, could you use a little extra help around the garden? I’m all caught up with my yard work and would like to help you in any way I can.”
- Hey Sam, we always cook for a crowd and always have some leftovers. I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”
In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help. You’re basically forcing him to ask for help. In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out. If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night. How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”
Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs. Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver. If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.