No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:
- In 2016, 15 million Americans provided unpaid care for people with Alzheimer’s or other dementias;
- That equates to 18.2 billion hours of care valued at $230 billion;
- 1 in 3 adults dies with Alzheimer’s or other dementia;
- It kills more than breast cancer and prostate cancer combined;
- Since the year 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s disease have increased by 89%;
- Every 66 seconds, a person develops the disease.
My novel, REQUIEM FOR THE STATUS QUO, (Black Rose Writing publication, July 2017) spotlights one family’s experience in particular – the Quinn family – while also visiting other households affected by Alzheimer’s or other dementias.
- Eddie and Katherine, a couple in their 40s. Katherine has a combination Alzheimer’s/Lewy Body dementia, a type of dementia that causes somewhat violent behavior and speech;
- Frank and his son, Sean, the latter of whom suffers from a traumatic brain injury (TBI) incurred while on deployment in Afghanistan;
- Victoria and George, a couple in their 80s, trying to crawl through the maze of George’s Alzheimer’s disease;
- Rose and Sophia, sisters in their 50s, struggling with the effects of Sophia’s vascular dementia;
- Donna and Kelly, partners in their 60s, experiencing the devastating effects of Kelly’s Parkinson’s disease and the dementia associated with her disease.
These are characters like you and I. They were living their lives the best they knew how, being good people and doing good for others, yet Alzheimer’s still managed to grab them by the throat and refused to let go.
The storyline is a difficult one but the way in which I have portrayed all of these precious people will touch your heart, and at times, your funny bone. No, there’s nothing humorous about the disease, but people will be people, and when they’re confronted with the impossible, they can find – or create – a bright side onto which they can find redemption and community.
I look forward to introducing you to my characters. Just a few more months before they’ll become a part of your life.
Are you overwhelmed to the point that you say to yourself, What could I possibly do to make a difference?
The answer is:
You can make a difference because kindness trumps all.
I recently wrote Ellen Degeneres to thank her for her ongoing efforts to spread kindness. Sure, at the end of each of her daily shows she says, Be kind to one another, but she puts force behind those words in what she does for others. At the conclusion of my letter to her, I said the following:
We’re not charged with changing the entire world, but we can have an impact on the miniscule portion of the world to which we have access. You’re doing it, and I will continue to do what I can from my corner of the world. If everyone makes a fraction of a difference right from where they are, those fractions will add up to great things.
I’m glad I’m on the same kindness train as you, Ellen, and I’ll keep chugging along until I can’t chug any longer.
I sincerely believe that random acts or words of kindness can make a difference in the world in which we live. There are so many negative and hurtful words being thrust into our universe, can’t we just please try to balance out that hurt with words of encouragement, recognition, and nourishment?
Yes, nourishment. In all our daily interactions – be they via social media or in person – we can nurture the hurt that exists all around us. Our words, our smile, our actions may just change the life of someone forever. Haven’t you been on the receiving end of that type of transformative nourishment? Didn’t it feel good? Didn’t it fill the emptiness within you that hungered and thirsted for confirmation that you matter, that you aren’t a failure, that you have potential?
Let’s revisit how that felt and commit to quenching the thirst of each person with whom we come in contact.
My novel, REQUIEM FOR THE STATUS QUO, contains a scene where Patrick Quinn – many years before his Alzheimer’s diagnosis – wakes up his high school aged daughters on April 1st and announces that local public high school students have the day off to honor April Fools’ Day. His daughters attend a parochial school – church based – and when they hear of said day off, they become incensed.
The girls get out of bed – anger seething below the surface of their drowsy bedheads – cross their arms, and they yell, “That’s not fair!”
Patrick agrees, April Fools’ Day is no reason to have a day off from school . . . then he claps his hands together, and barely stifling a laugh, he says, “Gotcha!”
That exact scene happened to my sister and I – thus the reason why I had to include it in my novel. My father had the keenest sense of humor – a funny bone that stayed with him even while the plaques and tangles in his brain leeched the very life out of him. As a family, we were very fortunate that his humor survived until the very end. That is not always the case, as readers will discover when they meet the other characters in my novel whose disease journey is far from cool, calm, and collected.
REQUIEM FOR THE STATUS QUO, release date: July 20 2017.
Black Rose Writing, publisher.
Here’s another article from the past that draws lots of attention. Bringing it into the present today.
First of all – take a deep breath and shed the mantle of guilt you’re wearing. Now let’s address your dilemma.
When your father was on his deathbed you made a promise to take care of your mother in her old age. Now she is at the point of not being able to care for herself and you realize that you’re absolutely not cut out for – nor are you capable of – taking her under your roof to provide the care that she needs. What’s a dutiful son or daughter to do?
I’m not advocating that you break your promise to your father but I am suggesting that you consider redefining what that promise looks like. You promised your father that you would take care of your mother and that’s exactly what you’re going to do. Taking care of your mother is not solely defined as moving her into your home and taking care of all her basic needs until she dies. Very few people have the ability or the means to provide 24-hour care in their home. You made that promise with the best intentions and you can still honor your promise without dishonoring your father. Keep in mind that loving your mother doesn’t guarantee your success as her caregiver. Even adult children with a fabulous relationship with their parent struggle greatly in their efforts. And if your relationship with your mother is tenuous at best, try picturing the scenario of you as caregiver and her as recipient of that care. What effect will that have on her, you, and the remainder of your household?
Let’s clarify how best to care for your mother.
Why can’t caring for your mother mean that you’re honest enough to admit that you’re not the best caregiving option? Do your best to find the care alternative that will provide her an optimal quality of life, e.g. adult daycare, errand and housekeeping services, assisted living. Do the research and consult the experts to confidently fulfill your promise to your father by securing the best care solution for your mother. If that solution involves selecting an assisted living facility, there are many resources available to you that can make this move a successful one for everyone involved. As her son or daughter you will be able to lovingly help her transition into a residential location with like-minded older adults where she can receive the care that will fulfill the promise you made to your father.
Now imagine the NEW normal that your mother and your family can experience.
Your mother lives nearby in an assisted living residence. She has companions with whom she enjoys spending time. She receives three wholesome meals a day and when she, or you, feel like seeing each other, you’re just a short drive away! The time she spends at your house will be as a pampered visitor – not an inpatient (or impatient) relative. It’s probably difficult right now for you to see this as a viable option, but I think in time, you’ll find that everyone, including your father, will be pleased with the outcome.
I covet your input. What success, or challenges in achieving success, can you share with us? I look forward to hearing from you.
I’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.
Walk in Their Shoes… Just for a Minute. The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.
Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us. We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia. If we could, we would shriek at what we see and experience.
So we get frustrated – understandably so. We raise our voices in anger – and feel guilty immediately thereafter. We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!
Do not ask me to remember is a loaded statement and one which should give us pause. We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born? Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question? Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with?
Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.” And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?
Because they don’t remember.
I’ve been authoring this blog, Baby Boomers and More, for five and a half years. Perhaps that’s a record for blog ownership, I’m not sure, but what I do know is that I thoroughly enjoy writing about matters of significance. I guess that’s why my blog has survived as long as it has: there are a heck of a lot of things going on in the world that fall into that category.
My website address remains the same: http://www.babyboomersandmore.com, but with a broader emphasis on life as it unfolds for all of us born within a certain year bracket:
- iGen (after 2000)
- Millennials (1980-2000)
- Gen X (1965-1979)
- Baby Boomers (1946-1964) and
- The Greatest Generation (before the end of WWII).
Yes, there are many differences between the generations but we have one major characteristic in common: although as individuals we are strong in many ways, we still need each other to get to the finish line.
With that change in overall focus comes a new, primary blog identification:
Living: the ultimate team sport
If we consider all the people with whom we come in contact as being members of the same team, we will do all we can to support them. We’ll bolster rather than compete; we’ll pick them up rather than step over them as a means to an end; we’ll exhibit respect for each other’s talents while nurturing our own; we’ll not take advantage of weaknesses in order to falsely boost our own strengths. In short, we’ll stand by our teammates and want only the very best for them.
Another goal of mine: write more succinctly, at least after this particular post. 🙂 I know you’re all busy and have better things to do than read my oftentimes lengthy magnum opuses. I’m newly committed to being as succinct as possible, somewhere along the lines of an article I wrote on December 27, 2016: Don’t go there. Let’s face it, as a writer, I should be able to use an economy of words to get my point across to those who’ve chosen to follow me.
And one last thing: the header images you’ll see at the top of my blog (which will cycle through randomly) are from photos I took during a few of my hikes around the Pacific Northwest. Hiking is my passion, so I’m pleased to provide snapshots of views I have been privileged to see.
With that, I’ll sign off for now, so very glad to be a member of your team.
If I can’t do anything useful, at least I would like to do as little harm as possible. Wherever You Go, There You Are, by John Kabat-Zihn
Do no harm is a practice found in various aspects of society – including the Hippocratic Oath – and it was the underlying principle of Mahatma Gandhi’s revolution and his personal meditation practice. But what does it mean? Is it really as simple as doing no harm? You tell me.
Do no harm: Don’t do anything while driving that will piss off other drivers.
Do no harm: Don’t speak ill of others behind their back.
Do no harm: Don’t use social media to bully or anger an individual or a group of people.
Do no harm: Don’t ignore the server or courtesy clerk who’s working as hard as he/she can for you. Engage them in conversation; make their day by respecting what they do.
Do no harm: Don’t be unkind to anyone; think of how it felt when someone was unkind to you.
Do no harm: Don’t litter or do anything that harms the environment, regardless of how small.
Do no harm: Don’t put off a kindness such as sending a card to someone for no reason at all – or for every reason you can think of. Your card and message may be just what that person needs that day.
Do no harm: Don’t ignore the impulse to turn around to the person behind you while in line to say, “I’m not in a hurry, why don’t you go before me.” You may not be in a rush and he or she may be; think how your thoughtfulness will impact the remainder of their day.
Do no harm: Don’t keep compliments to yourself. For example, if your spouse or friend looks nice, tell him or her. It doesn’t do the person any good if you keep it to yourself. Your lack of attention may cause harm.
Do no harm: Don’t expect someone else to make a difference; you make a difference in whatever way you can, even if doing so is an inconvenience. Your inconvenience may be just what the world needs at that very moment in time.
Do no harm: What I have provided above barely scratches the surface of how we can do no harm. Please add your input in the comments section below to provide all of us with examples of how we might improve our personal corner of the world.
My wish for you: health, joy, and peace in the New Year.