Health & Wellness
Long-term care: squeaky wheels and raging forest fires
Although now retired, over a twelve-year period I worked in long-term care (LTC) wearing three different hats:
- My first job in this industry was in the corporate office of a very fine assisted living and memory care company. In time, I decided to work in one of the company’s facilities so I could spend more time with the residents and families who chose our company for their LTC needs;
- When I left the company, I took several years off to care for my father who had Alzheimer’s disease. A few years after his death, I became a certified long-term care ombudsman for the State of Washington – an advocate for vulnerable adults living in LTC settings;
- Concurrent with my ombudsman work I became a trained Alzheimer’s Association caregiver support group facilitator, providing a listening ear to those on the caregiving path.
Given all that experience, I’ve seen and heard of many unfortunate and nasty occurrences where residents and patients were denied the basic rights each living person should expect to receive, especially those dependent on others for their well-being and quality of life.
I’m sorry to say that some nursing homes, assisted living/memory care communities, and adult group homes do not employ sufficient staffing to meet the needs of their residents. I can confidently say that the government agencies that oversee the LTC industry are also understaffed. When complaints are called in, those government employees have to apply grease to the squeakiest wheels and must turn their fire hoses on the most out of control fires in their case files.
That’s where you and I come in.
We must be the squeakiest darn wheels we can be so our complaint(s) are attended to.
We also need to be the hottest, most devastating fire imaginable so that our vulnerable loved one’s rights are respected.
One grievous example. This is just one example of common issues that arise in LTC settings. The complaint process I mention later in this post provides a good starting point when issues arise.
Nursing home call lights are being ignored so that residents/patients are left to defecate and urinate in their adult sanitary garments on a routine basis. Not only is such an act demeaning to the poor soul with no option but to let go of his/her bodily wastes, but said wastes are sure to cause skin breakdown and a urinary tract infection that is not only extraordinarily painful but can also be life-threatening.
What does the family member/good friend do about this indignity? They need to complain vehemently to the administrator of said facility and when she/he does nothing or very little, family and friends contact the local area’s LTC ombudsman program. This website will direct you to ombudsman resources right where you live: National Long-Term Care Ombudsman Resource Center.
Your local ombudsman program will investigate, work with the facility’s staff, and if need be, get the full force of the law to come to the defense of those in need. State ombudsman programs are staffed by paid and volunteer employees, therefore their staffing levels are usually higher than many government agencies. These ombudsmen all receive the same extensive training required for such a vital role. Once you’ve reached a dead end at the facility, ombudsmen are your most active line of defense. They are passionate about what they do and they will ceaselessly advocate for you and your loved ones. Their proximity to appropriate resources and their intimate knowledge of residents’ rights laws makes them an approachable and viable alternative for the common man’s (yours and my) needs. Caveat: if you suspect criminal activities such as physical or sexual assault law enforcement needs to be immediately involved in the matter. Additionally, severe lack of care that endangers the lives and well-being of adults more likely than not will also require law enforcement involvement.
Adults in long-term care settings are a reflection of you and me. By that I mean they were once active and self-reliant adults, just like many of you reading this piece, but they now find themselves unable to fend for themselves and need you and me to step in for them. Imagine, if you will, being in their shoes, unable to speak up for yourself. If you or I ever find ourselves in a similarly vulnerable situation, wouldn’t you want an advocate to step in on your behalf?
Advocacy for vulnerable adults falls on all of our shoulders. You can make a difference in the life of your loved one. Won’t you please step up to become their most important advocate?
Kindness Fridays
2017 was a year of conflicting emotions for me. There were many good times. These two stood out: our grandson was born and my novel, Requiem for the status quo, was published. But there were also times I’d like to forget, and once my hip gets better after this past October’s bionic replacement, that will become one of the most forgettable events of the year.
Kindness, however, wins out and drowns out the not-so-pleasant occurrences that can cause stumbling blocks to our gentle psyche. So on this last Kindness Friday of 2017, I’m posting links to a few of my favorites in the hopes that while I’m encouraged by past Kindnesses, you can be as well.
June 30th, 2017: walk away from cruelty
April 14th, 2017: kindness trumps all
March 17th, 2017: courtesy on the road
March 10th, 2017: my husband’s perfect eyesight
January 6th, 2017: 1st Kindness Fridays – Mall kindness
Kindness Fridays
Our grandson is seven-plus months old. He has experienced much kindness in his young life, kindness that exudes from each of us family members who love him so very much.
Lucas has several grandparents and even some great-grandparents who dote on him to no end. Aunties, Uncles, Great Aunties and Great Uncles, so many loving family members so that he will never want for love. We all go out of our way to assure his happiness and well-being, especially now while he is so dependent on us for each day of his life.
All three of our daughters had active grandparents in their lives. These weren’t just long-distance relatives who sent them cards now and then; they were tactile, involved family members who added greatly to their day-to-day lives.
I didn’t have grandparents, well, that’s not true, I had two grandmothers and one grandfather but only saw them for a total of maybe six times in my entire life. My dad’s father died before my mother and father were even married so there was no chance of me ever making his acquaintance. Grandpa Desaulniers died in a hospital when a doctor administered the wrong medicine to him, a medicine that killed him even though Grandpa’s reason for being admitted to the hospital was an extremely minor one. I never had the privilege of experiencing his kindness but I am certain Grandpa D’s character was also reflected in the way my father treated me, my brother and sister, and my mother.
But our grandson? He is on the receiving end of individual and joint kindnesses that will assure him great memories and an even greater life.
And his addition to all of our lives? A kindness that nurtures us adults and provides us with yet another reason to be glad that we’re alive in this world – a world that doesn’t always reward us so kindly.
Kindness Fridays
I’ll try to be brief with this week’s kindness. I have had a medical condition for the past three years that no doctor has diagnosed correctly. In September I went to a naturopath and based on my symptoms, she suggested a different type of doctor who specializes in what I most likely have.
My husband and I drove into Seattle to see this doctor on Wednesday of this week and within twenty minutes’ time, he easily made sense of what I’ve been experiencing, a condition that has caused my husband and I to cancel two vacations because of its acute nature. He clearly explained what was going on, was able to diagnose it and suggested treatments that will more likely than not improve my quality of life greatly. After one day of those new treatments, my body is adjusting and trying to function in a different way, and because it’s trying to do that, I didn’t sleep at all last night. I will aim not to be discouraged, however, knowing that once my body adjusts to this new treatment plan, I’ll be able to celebrate the start of a new quality of life.
Finally, a doctor who spent sufficient time with my husband and me who was able to apply his expertise to our situation, and provide hope and promise that I have not been able to enjoy for close to three years.
This week’s kindness celebrates this Seattle doctor with whom we met on Wednesday. This week’s kindness also celebrates the naturopath who got me on the right “path” to wellness without receiving financial benefit. She refused my insurance copay when I saw her back in September, not feeling it appropriate that she accept payment since she didn’t provide any measurable medical service to me.
That’s where she was wrong; her referral was one of the most effective treatments I have received for my condition up until this point.
Kindness Fridays
Chivalry isn’t dead, nor is good ol’ everyday courteousness.
We had a full day this past Tuesday, the highlight of which was taking care of our grandson. In the afternoon, a new refrigerator/freezer was scheduled to be delivered but we received a call that it would be delivered a bit late…right around our dinner hour.
I decided we wouldn’t want to cook that evening because we’d be waiting for the delivery (happened just after 4:30 pm as it turns out) and we’d be getting it filled with all the food we had placed into numerous coolers earlier in the day with solid ice blocks to maintain the foods’ integrity.
While our grandson napped I slipped out of the house to pick up a pizza at the Take and Bake pizza place nearby, leaving Lucas in the very capable hands of his grandpa. I don’t yet feel comfortable walking and carrying our grandson so Jerry needed to be the one who remained at the house so he could pick Lucas up out of the crib if he woke up before my return.
I snagged a parking space right in front of the shop so I didn’t have to get out my disabled parking pass. I hobbled into the pizza place, paid the employee for our pie, and tried to juggle my purse, my cane, and the pizza all at the same time, failing miserably in my attempts to do so. The young man quickly got out from behind the counter and said, “I’ll take the pizza to your car for you.” What a relief, and what a kindness. He didn’t know my car was so close by; it could have been anywhere in the two-days-before-Thanksgiving crowded supermarket parking lot.
And that’s this week’s kindness story.
Rewarding Alzheimer’s family caregivers
November is National Caregiver Appreciation Month, a time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting an eBook sale and giveaway! This is a terrific way for caregivers who are looking for knowledge, guidance, and support to find carefully vetted books to help guide and inspire them every day.care
Consider this information from the Alzheimer’s Association:
- In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.
- Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
- 41 percent of caregivers have a household income of $50,000 or less.
- Approximately one-quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.
Starting today through November 21st, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children’s literature. Many of our books are also available in paperback and audio, so be sure to check them out too. As a matter of fact, my novel is available on Kindle for just $2.99 through November 21st and if you prefer a paperback copy, my publisher is offering it at half price on my publisher’s site. Check it outhere!
One day at a time
Living one day at a time is a good philosophy to uphold regardless of what’s going on in one’s life. I would extend that sentiment to say, “Live each day one moment at a time.” It’s good to plan, set goals, even write a bucket list, but doing so addresses the future, not the present.
When I was admitted to a local hospital for hip replacement surgery, I knew that would be one step toward many that I would accomplish to attain complete recovery. I had no idea what accomplishments I would be able to celebrate or in what order they would appear, I simply knew I would eventually be able to move beyond my physical restrictions.
I was right.
Walker. Yep, I held onto this piece of durable medical equipment (DME) like it was my lifeline…because it was. I learned how to use it while still in the hospital and once I got home I outfitted my own walker with a multi-pocketed pouch wherein I stored necessary items: water bottle, iPhone, iPad, tissues, snacks, so that wherever I landed, I was set. Two weeks post surgery I was able to retire the walker. What a lovely step in the right direction.
Cane. Using my Hurrycane is liberating – I say is, not was, because it’s still attached to my person as a means of transportation. Today, November 6th, marks one month since my surgery and I am still nowhere near ready to retire this piece of equipment because I still need the support it provides. I’ve even learned how to use it as a pick-up-something-I-dropped-aid, as long as the dropped item is thicker than a piece of paper or bigger than the Vitamin D3 capsules I take every day but sometimes end up on the floor. I drop things often enough that my husband simply follows my trail of items to discern where I’ve been lately.
Raised toilet seat. I know, there’s a visual all of you would prefer not to have, but early on in my recovery, it was a requirement that meant the difference between responding successfully to my most base urges, or…not, and that visual would have been far worse to contemplate. Fortunately, it served me well and I retired it three weeks post-surgery.
Medications. Okay, this is a tricky one. I abhor having to take medications, whether over-the-counter or prescribed, but when your leg is sliced into, requiring major manipulations by the surgeon and his jolly helpers – not to mention sawing off sections of a bone that I would no longer need – a person is going to have lingering pain issues that need to be addressed, and this person sure does. I am a very slow healer; an 80-year old can have the same surgery as me and return to yoga or square dancing classes a mere two weeks after receiving their bionic hip. Not so, I.
So here I am, wishing I was further along in my rehabilitation but refusing to compare myself to others who appear to be better off post-surgery than I am. I can smile throughout my day and sleep well at night knowing I have one of the most effective rehabilitation tools a person could hope for: my husband. Jerry supports me physically and he supports me emotionally, the latter of which has been almost more important than the former. He recently held me in his arms on the couch while I bawled into his neck, saturating it and his t-shirt with my tears. On that particular day, I was tired of hurting. To be sure, pain is very taxing on one’s body and emotions – there is no separation between the two – so if my body is having a hard time, so is my psyche.
Is that a lose/lose situation? It can be, but if I remember to live one day or one moment at a time, I’ll be less inclined to allow fear and frustration to take root. Fear is based on the future: what if I never get better? what if the surgery didn’t work? what if I am never able to be as active as I want to be? what if I never stop hurting? All future-based.
When living in the moment I can celebrate my ability to:
- climb the stairs in my house two at a time instead of one;
- walk to the end of my driveway to retrieve the mail;
- get in and out of bed without assistance;
- bathe with very little assistance;
- dress myself;
- do more tasks in the kitchen than I was able to do four weeks ago; and
- hold my grandson and give him a multitude of smooches while he sits on my lap.
Regardless of how long it takes for me to get back to “normal” that time will come and when it does it’ll be right on time. In the interim, I’m going to acknowledge each moment as precious and not concern myself with that which has yet to occur.
Kindness Fridays
According to the 2017 Alzheimer’s Association Facts and Figures research, there are more than 15 million Americans providing unpaid care for people with Alzheimer’s or other dementias. Some have assembled a team of family and friends so the responsibilities are evenly spread out, but that is not always the case. The solo caregiver manages—or tries to manage—everything on his own.
That’s where those who are on the outside looking in can become a caregiver’s hero.
OFFER TANGIBLE ASSISTANCE. We will never be wrong in assuming the caregiver needs help so rather than saying, “Call me if you need anything” we can ask, “What exactly do you need?” If we remember what we needed when we were on the mend from illness or surgery we should be able to come up with an endless list of concrete gifts of assistance.
MEALS. You need to cook for yourself and/or your household anyway so make a double recipe, pack that extra portion in a disposable dish, freeze it, and keep doing that for a week and deliver one full week’s worth of frozen meals to the caregiver who, receiving your food offerings, can look forward to not having to be creative in the kitchen at the end of the caregiving day. Engage others to sign up for this dinner on wheels program so the responsibilities are spread out amongst many.
ERRANDS. You’re running to the store for a few items; take the time to ask Sam if there’s anything he might need while you’re out. He may need a half-gallon of milk—and he might have needed it for the past several days—but embarking on that task proved impossible for him. With very little effort on your part you can make a huge difference in Sam’s well-being. Maybe the needed item is toilet paper; acquiring that for him makes you a genuine hero!
CHORES. The last task a time-strapped caregiver considers doing is housework or yardwork. You will not insult your friend or neighbor by offering to vacuum their house or clean their bathrooms. Or perhaps it’s a lawn that needs mowing or a flower bed, weeding; that sprucing up will provide the caregiver with a virtual—and literal—fresh view of their circumstances.
OTHER OPTIONS. Sam may turn down home improvement offers but he might say, “What I could really use right now is some help figuring out Nancy’s health insurance statements.” Or he might say, “My wife’s not much of a conversationalist anymore, I’d give anything to have an hour to talk with someone who is. Could you stop by later today for a visit? I’ll even talk politics if it means having someone else to talk to.”
WHAT I KNOW FOR SURE. The family caregiver has so much going on physically and emotionally, offers of assistance can be the salve that gets them through each day.
Grief: Your caregiving friend is grieving the loss of a person who is still with him. Unlike the sudden death of a family member, the Alzheimer’s caregiver suffers the prolonged loss of their loved one—oftentimes called ambiguous loss—because although physically present, the person with dementia is continuously leaving their loved one.
Exhaustion. Physical, emotional, and spiritual exhaustion sneak up on the solo caregiver and they are killers. The solo caregiver must put their needs above those of the one for whom they are providing care and sometimes they need you, the outsider, to help them prioritize those needs. Just like the airlines’ seatbelt instructions, the person meeting the need requires attention before the one requiring it.
BOTTOM LINE. You have so much to offer the time-strapped family caregiver; your gifts of kindness are more valuable than you could ever imagine.
Do you want additional insight into what caregivers with whom you are acquainted are facing? You can order Requiem for the status quo at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. And if you have already read my debut novel, please consider leaving a review on the online retailer’s website of your choice.
Meet Marita Golden, author of “The Wide Circumference of Love” — AlzAuthors
Silent Storm: What We Remember, What We Forget, What We Discover A Novelist Meditates on Writing about Alzheimer’s By Marita Golden I didn’t choose. I was called. That’s how inspiration, art, and creativity work sometimes. I am often asked why I wrote a novel about Alzheimer’s disease. I am not caring for anyone afflicted with […]
via Meet Marita Golden, author of “The Wide Circumference of Love” — AlzAuthors
Kindness Fridays
- Bionic hip
- Loss of independence
- Healthcare TLC
I received a new right hip this past Monday afternoon which rendered me fully dependent on the staff of a local hospital, Evergreen Health Medical Center in Kirkland, Washington. As a two-night inpatient at the hospital, I was reliant on staff for absolutely all of my needs.
If you can imagine everything you do during the course of a day requiring at least one medical person to provide intimate assistance, you can easily imagine all the tasks incumbent upon the nurses, certified nursing assistants(CNA), physical therapy personnel, food delivery staff, and even someone such as Barbara the housekeeper, at your beck and call.
My personality is such that I’d much rather be giving than receiving. Each time I pushed the nurse call button I carefully considered whether such a request was warranted: bladder full to rupturing, yeah, warranted; refill of my patient water carafe? Maybe I could wait and encumber the next person who walks into my room.
From the time I checked in for surgery at 11:30 Monday morning until I was discharged at 2:30 Wednesday afternoon, each person with whom I came in contact was fully dedicated to serving my needs. They noticed if my blankets were pushed asunder in my bed and straightened them comfortably around my body. When shuffling with my walker to the bathroom while wearing my backless hospital-issued gown they discreetly covered me up and made sure my dignity was kept intact.
Then there was the aforementioned employee who after knocking on my door said, “It’s just me, Barbara the housekeeper.” Upon granting the 60-something-year-old admission to my room, she said, “I want to be sure your room is clean and acceptable. You don’t need to do a thing, just lay there – and you (my husband) sit comfortably in the folding chair and I’ll work around you.”
I engage absolutely everyone I come across in conversation so it was quite natural for me to converse with Barbara the housekeeper. I asked her how long she had been working at Evergreen and it had been quite some time. “You must have seen lots of changes over the years.”
“Yeah, of course I have, but it’s good. I like what I do. I like all the people I get to meet over the course of a day.”
“I’m sure you’ve met those who, because of their circumstances, weren’t exactly the most friendly people you’ve encountered in your life.”
“Aw, sure, but you get that everywhere, not just in a place like this.”
True, so very true. As I’ve mentioned in past blog posts, each of us has a choice of whether to make or break someone’s day. I can tell you that there was not one employee at the hospital who broke my day, rather, each person made my stay there as palatable as it could possibly be. Mind you, the dings of call lights going off all day and all night from the nurses’ station directly across from my room weren’t the highlight of my stay, but those dings are far easier to accept when you realize that you initiated your share of call dings yourself and benefited from the responses of the dedicated medical personnel who had to answer such pleadings.
All in all, I’d have to say that if you have to go through the pain of getting a new and improved hip in order to lead a more comfortable life going forward, being treated with kindness during the process certainly renders the recovery far more appetizing. This former patient has no complaints whatsoever. She was treated like a queen.
Lighten up Mondays
I’m not on a diet but thought I’d spotlight dieting humor this week.
- The first day of dieting is always the best. You’re supposed to rid your house of all bad foods…what a delicious way to start a diet.
- You know how it is when you feel like you’ve been dieting for months and realize it’s only been since 9 that morning?
- Not only did I fall off the diet wagon, I dragged it into the woods, set it on fire, and used the insurance money to buy Twinkies.
- Professional tip: if you sprinkle coconut oil into your kale, it makes it a lot easier to scrape it into the trash.
- How’s the diet going? Not good, I had eggs for breakfast. Scrambled? No, Cadbury.
- You know how it is when you decide to have a cheat meal and all of a sudden it’s three years later?
- I want to be a caterpillar: eat a lot, sleep for awhile, wake up beautiful.
- I choked on a carrot this afternoon and all I could think was, “I bet a donut wouldn’t have done this to me.”
Kindness Fridays
One way of expressing kindness is by expressing gratitude.
Anytime we think we don’t need to thank someone for something they’ve said or done that meant something to us, we do them a disservice.
My husband and I have been gifted with daily gratitude each time we take care of our grandson during our daughter and son-in-law’s work week. We have a routine: our daughter drops off our grandson and all other items needed for his day with us and as she gets into her car she always says, “Thank you.”
Our son-in-law picks up our grandson after a grueling day of work outside and after securing our grandson into the backseat of his truck, he says, “Thanks you guys.”
We’ve been caring for our grandson a few days a week since early August and now with September coming to a close the routine is pretty much set in stone but what isn’t set in stone, what is always fresh and affirming, is that our grandson’s parents bend over backwards to express their gratitude for what we’re doing to enable them to go to work and not have to worry about the care their son is receiving.
Big deal, right?
It is absolutely a big deal. We thoroughly enjoy the time we spend with our grandson – it is such a privilege we have been given – and we enjoy seeing his parents each caregiving day. Their expressions of gratitude never get old; every time they say “Thank you” I am filled with warm fuzzies that carry me through the day and the night. Such delightful adult children.
Kindness Fridays
I kind of blew it this week, so here is me being very transparent with you.
Tuesday of this week was the day my husband and I had multiple appointments to take care of. After I spent all morning having pre-surgical tests completed at the hospital in preparation for my October 9th hip replacement, I raced home to grab lunch, did some writing business in my home office, and then set out again for another doctor’s appointment that was originally scheduled for 1:30 but my doctor’s office called earlier that morning to reschedule the appointment to 2:45. I wasn’t happy with that change but sometimes – all the time – you just gotta go with the flow.
The problem was, my attitude wasn’t flowing very well by the time I arrived at said doctor’s office at 2:35 pm when the front desk employee told me my appointment was not until 3 pm.
“No, when this office called me this morning to change my appointment time, they specifically said the appointment time was 2:45, there was no indication that 2:45 was the check-in time.”
“I’m sorry, but no, the check-in time is 2:45 for a 3 pm appointment.”
I knew getting all huffy wouldn’t change the current situation but I chose to be huffy – it really is a choice when we choose to be huffy and that’s what I chose to be at that particular moment in time. I’m sure the front desk employee wasn’t the one who called that morning to tell me of my revised appointment time but I guess I felt I had a right to be upset.
Don’t get me wrong, I didn’t yell, I didn’t accuse anyone of being incompetent or anything as brash as that, but I let my mood transfer to that poor unfortunate employee and it was selfish of me to do so. You see, being kind is a conscious decision we make, but not being kind is a decision we make as well.
Fortunately, I had to return the next morning for a medical test and the same employee was at the front desk. I explained that the previous afternoon when I was checking in for my appointment I exhibited a bad mood toward her and I wanted to apologize for it. She thanked me and added that she didn’t think I was in a very bad mood at all. But I’m still glad I apologized. The Universe gave me an opportunity to make things right, and this time I chose wisely.
Kindness Fridays
Community. That’s what this world needs: a unified body of individuals.
That doesn’t mean we all have to have the same political, social, or religious affiliation. What it does mean, however, is that we choose to live in unity and in support of each other.
Have you had the experience where you’re having a pretty darn good day and someone says or does something to you and your entire day’s direction is negatively altered?
In the alternative, have you experienced a bad day when someone says or does something to you and your entire day’s direction is altered for the better?
In the former, someone chose to live separate from you; chose to not recognize you as his or her fellow man; chose to harm you and widen the gap between the two of you.
In the latter, a kind-hearted person chose to come out of themselves; chose to join with a fellow survivor on this planet where division and hatred would seek to become the norm; chose to bridge the gap between the two of you.
My modus operandi is that I assume each person with whom I come in contact during my day needs my friendly words and actions in order for their day to improve. I believe in most cases I’ll be right on the money with that MO.
I mean, it sure couldn’t hurt, could it?
“How to have Fun with your Aging Parents”
I am reblogging the attached article about Christina Britton Conroy’s book that truly appears to be one all of us Baby Boomers need to add to our bookshelves. Personally, it has been a delight to be one of the AlzAuthors’ newest members. I am in such good company. Coming December 20th, you’ll be able to view my introduction as a member of this enriching group of authors.
Source: Meet Christina Britton Conroy, author of “How to have Fun with your Aging Parents”
Kindness Fridays
Although the solar eclipse is a thing of the past, I’d like to report about a kindness our neighbor extended to us on that same day.
On Solar Eclipse Day, my husband and I were taking care of our grandson at our house. We didn’t take him outside, of course, and we decided we would watch the eclipse on the various television programs covering it live.
Our across the street neighbor texted me to ask if we were watching the eclipse outside. I responded that we hadn’t acquired any of the special glasses so we were not.
Not more than a minute later, our doorbell rang and there stood Ian with a pair of viewing glasses for our usage; he had an extra pair and wanted to make sure we had a chance to watch an event that certainly would not occur again in our lifetime.
And what a sight to see! So glad Ian’s generosity made it across the street to our house.
Honor thy father
My father was the inspiration for my novel Requiem for the status quo.
I have held three author events since my novel’s release back in July and I have more planned before the end of the year. At the senior centers and independent bookstores where my events are hosted, each person attending is certainly there in support of my efforts, but more importantly, I believe their presence honors my father’s story, a story without a happy ending.
Here’s an excerpt from my novel that speaks of my fictional characters’ dilemma, but it also mirrors that which occurred in my real life experience with Alzheimer’s.
If it’s true that cancer is no respecter of persons, it is equally true that Alzheimer’s disease exhibits the same lack of respect. This disease is a murderer and I’m troubled by the millions of crimes it has gotten away with.
Alzheimer’s is also a robber, not only because it robs a person of his or her memories and future, but also because it exacts an emotional price that few can afford. To be sure, monetary costs are a challenging force to be reckoned with, but many family caregivers and their loved ones would no doubt conclude that the emotional toll on a person far surpasses even the costliest of care fees paid.
Until the person with Alzheimer’s or other dementia becomes blissfully unaware of the disease that is murdering him, he has a front row seat to all that is happening. My dad was the first to know when his senior moments became more than a quirk of the aging process. It grieves me to imagine what he went through when he was alone with his thoughts, witnessing first hand where those thoughts were taking him.
Yes, my father had a front row seat to the effects of a disease that is always fatal. Until he eventually became blissfully unaware, he lived with that fact every single day. If the caregiver thinks she or he has been dealt a bad hand in relation to Alzheimer’s, imagine if you possibly can how that hand plays out with the person diagnosed with the disease. I don’t know about you, but my imagination in such matters paints a picture I’d rather not see.
My very real reward for writing my novel is that my father is honored as a result of my efforts. Additionally, it is my sincere hope that those reading my novel and attending my author events manage to discover that they have a cheerleader in their corner…me.
Kindness Fridays
A bit unusual post on my part.
I have a medical condition – going on 2 years – for which no medical professional has provided a solution.
This condition has caused 8 nights of no sleep due to its symptoms in the last 6 weeks alone, and many other sleepless nights in the past 24 months. We cancelled a trip September 2015 because of it.
The most recent episode had me calling the specialist office to reach the on-call doctor this past Sunday. He is not my normal specialist but he provided a treatment that two of his own fellow physicians were not able to provide for the past 2 years.
Today I celebrate the kindness of a medical professional who took the time, on a Sunday, to prescribe the right treatment for me. He is my new specialist. Quite frankly, he is my medical hero.
This was and is a kindness that has made a huge difference in my health.
Lighten up Mondays
I’m in the mood for some medical humor, so here goes:
Q: What’s the difference between a general practitioner and a specialist?
A: One treats what you have, the other thinks you have what he treats.
*****
The best doctor in the world is the veterinarian. He can’t ask his patients what is the matter – he’s got to just know.
– Will Rogers
*****
A patient arrived at the Emergency Room at 0400 with no complaints: “I have been having chest pain for 4 months but I am not having chest pain now. The reason I’m here now is because I heard that 4am is the best time to come cause there are not that many people. ”
*****
My friend is a Botox junkie—she can’t stop getting the injections. But surprisingly, when I reminded her to get her flu shot, she shuddered. “I hate needles,” she said. I had a solution: “Just pretend it will make your arm look younger.”
*****
Visiting the psych ward, a man asked how doctors decide to institutionalize a patient.
“Well,” the director said, “we fill a bathtub, then offer a teaspoon, a teacup and a bucket to the patient, and ask him to empty the tub.”
“I get it,” the visitor said. “A normal person would use the bucket because it’s the biggest.”
“No,” the director said. “A normal person would pull the plug.”
The secret of Alzheimer’s disease
I discovered something shocking during the weeks that followed my novel’s release:
Alzheimer’s disease is still a secret.
I know; we’ve all certainly read about it, especially when a celebrity is diagnosed with the disease. Every once and awhile there might be an Alzheimer’s Association commercial on television…that is assuming we don’t fast forward through it or walk out of the room. Another reason we’re familiar with the disease is that it is happening to so many people with whom we are acquainted – whether intimately or tangentially.
But it’s still a secret. The very definition of the word speaks to its intent: adj. not known or seen or not meant to be known or seen by others; n. something not properly understood; a mystery. from the Concise Oxford English Dictionary
In many of my promotional posts and boasts for my novel Requiem for the status quo, I’ve indicated that my book tour would probably look more like a senior center tour than what is normally the route for authors: readings and signings in major and independent bookstores. That’s the tact I took, approaching numerous senior centers in Western Washington. 25% of those I approached booked my author event on their activity calendars. But when I approached a major senior housing community foundation to get on their speakers’ calendar, I was told the residents pushed back at the foundation’s previous efforts to enlighten and inform when they hosted those who spoke to the reality of Alzheimer’s disease and other dementia.
Requiem characters’ radio interview
Craig Boyack, author and author supporter – yes, author supporter – conducted a radio interview of two of the characters from my debut novel, Requiem for the status quo.
Patrick Quinn, father of the protagonist, Colleen Strand, has recently been diagnosed with Alzheimer’s disease and he’s having a difficult time trying to figure out how not to be a burden to his daughter, Colleen. He’s friendly with the radio host, even joking about a part of the male body that withers and needs medicinal support and encouragement from time to time. (Don’t worry, it’s G-Rated, you have to read the context of the interview to fully appreciate the sense of humor this fine, eighty-four year old man exhibits, even in the midst of his disease journey.)
Jonathan Quinn, Patrick’s son, who’s not too keen on what has happened to the father whom he at one time looked up to. Yes, Jonathan is embarrassed by his father’s forgetfulness and seems to think his father’s challenges are all about him, Jonathan, instead of the person who has a front row seat to every twist and turn the plaques and tangles of his diseased brain takes. Jonathan is firmly implanted on the road to denial and sadly, it gets in the way of his relationship with his father.
The interviewer is a fictional character, Lisa Burton, a character in one of Craig Boyak’s novels. The interview takes place on her show, Lisa Burton Radio. This different way of interviewing an author, in this case, me, and spotlighting the author’s novel, is so ingenious, you will be taken aback by how effective Craig’s blogging methods are.
Please, read the interview, and when you’ve done so, I hope you’ll purchase my book from any of the many online and brick and mortar book stores out there, including Barnes & Noble and Amazon. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will also be available at most online book retailers on, or about, July 27th.
Release day for Requiem for the status quo
Today is release day for my debut novel.
On December 29, 2012, I first sat down to write that novel.
On the day of the fifth anniversary of my father’s October 13, 2007 death, I decided to write a novel inspired by my caregiving experiences as his Alzheimer’s care manager. I was certain novel writing would be a huge undertaking because up to that point, I had never written fiction. Because of the enormity of said project, I figured I would wait until the beginning of the following year – you know, a fresh start and all.
But the universe had other plans. My December 29, 2012 horoscope was what the universe used as the catalyst to get my attention. More than that, it shocked me into action. The horoscope so alarmed me, I cut it out of the newspaper, typed it out in large font, and after writing my novel’s very first page, I framed all three to memorialize the outstanding coincidence of what my Taurus-scope said. Here, for your enlightenment, is its wording:
Now’s perfect to start a new writing project; no need to wait until next year. Put down your thoughts without worrying about form, one word at a time.
I showed the horoscope to my husband and if it at all possible, he was more shocked than I at the horoscope’s content. He left me alone the remainder of the day, knowing the horoscope meant business, and so did I. I closed the door to my office, sat at my computer and started typing.
I didn’t know what I was doing. As I mentioned earlier, I had never written fiction. At that point, my personal blog, Living: the ultimate team sport was filled with 100s of non-fiction pieces, most of which centered around aging, long-term care, as well as numerous posts about Alzheimer’s disease, other dementia, and the caregiving struggles faced by families. But to write prose – with dialogue!!!!! – was beyond my skill set, and remained to be for quite some time.
The short of the long of it is that Requiem for the status quo was not the first title for the novel, there were many, the first being Have we met? Aren’t you glad I changed it to its current one? Not only were several titles tried on but my magnum opus went through many rewrites, most notably and importantly, the first draft contained a whopping total of 140,000 words. You see, I had a lot to say and I just kept typing until I had nothing more to add.
That’s an excellent way to get thoughts down on paper, but the first draft is by no means the final product that is pitched to agents and publishers. My now published novel is less than 68,000 words. Yes, lots of cutting and slashing took place over the years, to the point where not only am I proud of the finished product, but a publisher is also proud of it, Black Rose Writing.
I will close this post by providing glimpses of my father to you over the years. I hope you enjoy this montage that includes, from top left: My mother and father’s wedding day, 1947; my wedding day 2000 (my favorite photo of my dad and I); and the Desonier family circa 1971.
Reader discoveries
To celebrate my novel’s release, I held a giveaway on a Facebook readers group, A Novel Bee, and made some extraordinary reader discoveries.
I gave the members of that group 24 hours to leave a comment on my giveaway announcement if they wanted to be entered into my contest to pick one lucky (hopefully lucky) reader to receive a complimentary copy of my novel, Requiem for the status quo.
I received 37 entries, and a considerable percentage of those readers’ entries made mention of their own personal Alzheimer’s/dementia caregiving journey. Here are just a few of those comments:
- I am a geriatric care manager, can’t wait to read it!
- My friend just had to put her mom into a caregiving rest home because she could no longer handle her. She was becoming quite violent. It is a horrendous disease.
-
I love that you are writing inspiring stories! Many of us are or were caregivers and the hopelessness we feel when we dont see them getting better can be overwhelming. Your compassion is so sweet and much needed in todays world. Im really excited to find a new author I can enjoy!
- I would be honored to read this book, my father had Alzheimer’s disease. I want to tell you that the cover is totally amazing !!!!!
- I would love to win. My husband has Alzheimer’s/ dementia so it is if special interest to me.
Even as familiar as I am with the statistics for this disease – 44 million diagnosed worldwide as of this writing – it still astounds me to hear the personal stories associated with it. Like every terminal disease known to man, Alzheimer’s and other dementia are very personal diseases. The brain – the very essence of a person’s being – is the initial body part affected. What we say, how we behave, and who we are resides in the various, vital parts of our brain. Our brain is the grand traffic director of all things me.
It’s no wonder the very long goodbye associated with this disease is so devastating to the one diagnosed, as well as for the one caring for her or him. It’s very personal, isn’t it?
I am of the belief that family dementia caregivers are 21st century heroes. Additionally, all caregivers, not just those on a dementia caregiving journey are the best of the best. They are:
Ordinary people, doing the ordinary right thing, at an extraordinary time.
I am honored to be in your company.
Requiem for the status quo will be released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.
Author Celebration: Books about Alzheimer’s disease
To celebrate my own book’s July 20th release, a book that’s about Alzheimer’s disease and other dementia, I am tooting the horn of other authors who have done the same, a few of whom I know personally.
There’s a high degree of sadness surrounding this list because almost without fail, those authors who have written memoirs, story collections, fiction, and non-fiction books have done so because of their own personal Alzheimer’s journey.
Ann Hedreen, Her Beautiful Brain – A Memoir. Ann lives in Seattle, Washington, and has provided valuable support to me through my own publication journey. To quote Amazon.com:
Her Beautiful Brain is Ann Hedreen’s story of what it was like to become a mom just as her beautiful, brainy mother began to lose her mind to an unforgiving disease.
I can not imagine the struggle Ann endured while being a new mother whose time and energy was already spread so thin when life happened to her and her household, in a manner hardly believable to so many of us.
Collin Tong, Seattle journalist, Into the Storm – Journeys with Alzheimer’s, a compilation of true stories that starts with the very personal story of Collin’s caregiving journey with his wife, Linda. Collin’s support of my project, telling me not to give up when so many agents and publishers wouldn’t give me the time of day, inspired me to keep on keepin’ on. His story collection is amazing. Again, quoting Amazon:
In his compelling new anthology, Into the Storm: Journeys with Alzheimer’s, twenty-three writers, journalists, educators, health practitioners, social workers, clergy and other family caregivers from across the United States share their intimate stories of caring for loved ones with Alzheimer’s disease and dementia.
Each of the twenty-three stories are gems that you do not want to miss. I know you will be as impressed as I was by each and every one of them.
The next entry contains numerous authors and their books, found in one central location: AlzAuthors. The purpose for their site states:
We are AlzAuthors. In some way, each of us who have come together on this site have been affected by Alzheimer’s Disease/dementia. We share our experiences to bring knowledge, comfort, and understanding to others on this journey.
Click on this link to the AlzAuthors Bookstore to discover a wealth of informational and engaging books that will meet the needs of those who are caring for parents or grandparents, spouses or partners, those living with Alzheimer’s and dementia, fiction books, books for children and teens, and those offerings that provide helpful information for one and all.
3rd Act Magazine, not a book, but a publication addressing the third act of one’s life, usually heavy on those of us who are Baby Boomers. This publication has so much to offer its readers. I, for one, am pleased that the subtitle of their magazine reads, Aging with Confidence. You got that right! You’re not done with us yet; we have so much to offer the world that is spread out before us.
And yes, all of the above-mentioned projects prove that a lifetime of experience – the good and the not so terribly good – equates to having something to say, and not being afraid to say it. Which brings me to my part in that effort:
Requiem for the status quo is currently available at just about any bookstore you can walk into or find online. If a particular store doesn’t currently stock my novel, simply request that they order one for you and you should be able to get your hands on it in short order. You can order Requiem at Barnes & Noble and Amazon. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th. Additionally, would you like your local library to carry my novel? Simply ask them; quite often they are quite willing to accommodate individual requests.
Requiem for the status quo is dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.
I love you Dad.
The family caregiver’s hope quotient
Each person reading this post has experienced a time when their hope quotient was at an all time low.
The definition of hopeless: 1) feeling or causing despair about something; 2) inadequate, incompetent.
When life happens, as it always does regardless of our preferences, we’re bound to find ourselves unable to manufacture even a modicum of hope to get us through the circumstances in which we find ourselves:
- The loss of a job and the financial repercussions resultant from that loss.
- Crimes against our body or our property.
- Relationship disruptions.
- The devastating diagnosis of a debilitating disease: cancer, ALS, Alzheimer’s disease.
Hope isn’t what a person feels when the rug has been yanked out from underneath them and their very existence as they knew it, maybe even just five minutes earlier, takes an irreversible turn.To be sure, that’s how quickly hope can take a nosedive. Equally as quick, we can not imagine we will ever feel happy again, nor can we imagine not being overwhelmed with how life has showed up. In an instant, our level of hope took a nosedive. Read the rest of this entry »
Kindness Fridays
I was reminded the other day about an extraordinary kindness given to me shortly after I moved to the Seattle, Washington area with my two cats, Kate & Allie, the summer of 1994.
I moved into my Kirkland, WA apartment in July, secured a job as a paralegal early August, and on September 24, 1994, I received a Saturday phone call from my father, telling me that my mother had died in her sleep the night before.
Other than my brother and his family who lived nearby, I had very few acquaintances that early in my Washington state residency. Those who have gone through this type of emotional disruption know that while dealing with the rawness of grief, other matters require immediate attention. For me it was getting together with my brother and his wife that same day, making airline reservations to Honolulu, Hawaii – where my parents lived – and notifying business associates of our need to suspend all work activities so we could gather around our father who had just suffered the loss of his wife of forty-eight years.
There was one detail that needed attention in my household: my two cats who would be left on their own for, what turned out to be, a two week period of time. What’s a person to do?
I had seen and said hello to my upstairs neighbor and her Great Dane a few times but as yet hadn’t truly met and gotten to know her. I traipsed upstairs, knocked on her door, but she was not home.
Back downstairs I wrote a note explaining my emergent situation, asking if there was any chance she could check on my cats daily, feed them twice a day and fill their water bowls, and empty their litter box. I told her I would be home all day preparing for the next day’s departure and she could either call me or come downstairs and knock on my door. After placing the note in the crack of her door, I went downstairs to finalize my packing.
An hour later, she knocked on my door, pulled me into a hug, cried with me, and gladly offered her assistance in my time of need. I returned two weeks later to find two very healthy and happy cats in my apartment. Turns out she didn’t just perform the perfunctory feeding and litter box tasks, she played with my cats, even buying additional cat toys to entertain them on a daily basis so they would receive the love and attention I would have normally paid them.
That started a delightful friendship of going on walks, spending dinners with each other, and sharing in each other’s lives. Tragedy ushered in a kindness that greatly improved my life going forward.
I found hope in the midst of tragedy.
Kindness Fridays
I’m really going in a different direction with this week’s post, so bear with me.
A person can’t live in this world without being personally offended or attacked for any number of reasons, whether founded or unfounded, countless times during the course of his life.
In this world, there exists those whose modus operandi is to criticize others, bring others down, make fun of them, even bully them. The person with that MO may have any number of “reasons” why he or she acts that way, but none of those reasons are justified, plain and simple.
What do we do when someone acts that way toward us? I know how we feel, we feel hurt and angry; we feel we must be on the defensive and maybe we even want to dish out the same pain, or worse, than what was inflicted on us. A defensive action, however, turns us into someone no better than the person who lashed out at us; we join their ranks.
When an unkindness is said or done to us, the higher road is to not respond in kind. By that I mean maybe it’s better we don’t go on the defensive, we don’t fight fire with fire. Oh, let me tell you, the base part of our character wants to let loose with our own brand of meanness, but each and every one of us has the ability to choose a contrary response. Each. And. Every. One. Of. Us.
Don’t get me wrong, I’m not suggesting you lavish the offender with peace, love, and happiness – there are very few of us who could pull that off – but what I am saying is that we can choose to stay silent. We can walk away – both figuratively and physically – and leave that person to wallow in the slime they just created.
I learned long ago, that if someone yells at me and I choose not to yell back, their fire goes out. If I don’t feed their anger, it has nowhere to go but down. Quite frankly, my decision to walk away hurts that person far worse than any words I could ever spew back. I guess sometimes you just have to kill them with kindness.
Just. Walk. Away.
Writing to make a difference, one person at a time
First and foremost, I sat down at my computer because I had something to say about how Alzheimer’s disease affected my father. Additionally, having graduated from the unofficial school of family caregiving, I figured someone just might benefit from the good – and the not-so-good – ways in which I managed my father’s illness.
Now thirteen years after my father’s initial Alzheimer’s diagnosis, my novel will hit the virtual and brick & mortar shelves of bookstores. It will also make its way in person to a number of senior centers and senior living communities in my area. As an event on their activity calendars, I will read passages from my novel that might just ring a bell in the minds and hearts of those gathered to listen to what this Baby Boomer has to say. Maybe what I share will inspire them to purchase REQUIEM which I will gladly sell to them at a highly-discounted price. And once they’ve read my novel, perhaps they will share it with someone else, and so on down the line.
Is REQUIEM about Irene Frances Olson and her father, Don Patrick Desonier? Read the rest of this entry »
Kindness Fridays
For some, this may seem a trivial expression of kindness. For me, not so much.
When my husband and I aren’t hiking, we “hike” through the streets of our very hilly neighborhood. We have various walks that we take:
- The Wall – a very steep incline in a short period of time
- The Monster – a very steep incline over a longer stretch of time
- The Broadhurst (or Reverse Broadhurst) – a longer walk in an adjacent neighborhood, and
- The Broadhurst Monster – a steep hill in that same neighborhood
While on our walks, I lift up my hand in greeting to everyone who drives by, and without fail, the driver always returns the gesture. Sometimes the occupant in the car gives me a hand greeting before I can even lift my arm to do so.
“Yeah, but Irene, that’s not a very deep connection with someone; it’s just a throw-away gesture.”
Not to me it isn’t. It’s one way of connecting with people I might never meet. And besides, maybe the “hello” affects them just as positively as it affects me. What a great and simple gift that is.
My Alzheimer’s family caregiving journey
I had the privilege of being my father’s caregiver during his multi-year struggle with Alzheimer’s disease that ended with his death in 2007. Five years after his death, I started writing my debut novel, Requiem for the status quo, to be released by an independent publisher, Black Rose Writing, on July 20th. And now five years since I started my novel, Requiem will be available to everyone in less than 30 days. My debut novel was inspired by my father’s and my caregiving journey and is dedicated to the man whose later years was robbed by a disease that is always fatal. The book’s dedication reads: Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.
I am in the very distinct and healthy position of understanding that realistically, as a debut author I cannot hope to be an instant and resounding financial success. But that’s okay, because for me it has never been about the money, but very much about helping those who are experiencing or have experienced an Alzheimer’s caregiving journey similar to mine. For that reason, most of my “book tour” will encompass senior centers in the region, as well as senior living residential communities where I hope to hold readings and sell my novel to seniors at a highly-discounted price. I know it is said that when trying to fill an auditorium, it’s all about getting butts in seats, but for me, it’s about getting books into laps.
And that’s what I’m going to do.
Requiem for the status quo is currently available for preorder at Black Rose Writing, enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble right now, and Amazon will be providing preorder opportunities in the days ahead. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.
Living: the ultimate team sport 