Over the years I’ve discovered that when we are part of a community of people, our quality of life increases. The support of others can’t be beat. For me, community is like-minded people with a common thread through their lives that provide meaning and purpose for one’s day to day existence.
I found community in a writer’s group called AlzAuthors, a compendium of authors who have all been affected by Alzheimer’s disease and other dementia. All of us authors share our experiences through our non-fiction and fiction works to bring knowledge, comfort, and understanding to those on a similar journey to the one we have already completed. Trust me, we all wish such a group were not necessary; that the common thread we share didn’t involve the always fatal disease of Alzheimer’s and related dementia; but it is necessary and we’re filling a need that as of this writing doesn’t show any chance of abating.
I’ve never met any of these authors – I live in Washington State and the rest of the authors represent just about every state in our nation – but because of our common journeys, we are members of a community. Are we all politically aligned identically to each other? Probably not. What about religious practices, do we follow the same spiritual practices as every member of the group? Hardly, but it doesn’t matter. What we have in common does matter: we are dedicated to encouraging and helping families and individuals whose lives have been interrupted by Alzheimer’s disease. Speaking for myself, I am so glad that my novel, Requiem for the status quo, can reflect the good and the bad decisions I made and other individuals made, so that those who are still on the Alzheimer’s journey might do better because they know better. I hope you’ll get to know us AlzAuthors through our website and that you’ll become an AlzAuthors Reader Community once you’ve browsed through our bookstore. Click here to go directly to the AlzAuthors Bookstore to find a library of books – more than 140 as of today – that link directly to Amazon or other purchase outlets.
So that’s it. This week I celebrate the kindness I have found in the AlzAuthors Community. Sure beats going it alone.
- 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.
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?
Those of you familiar with Goodreads know that authors give away tons of books on that site all year round. I figured, I’m an author, and I’m pretty generous, so I think I’ll give away some paperback books as well!
Go to Goodreads (you’ll have to be a registered user to participate) and enter my 6-book giveaway that starts today, December 1st, and runs through December 8th. It’s easy to register on Goodreads, you don’t even have to create a new user persona; you can register using your Facebook, Twitter, Google, or Amazon log-in information.
Once you’re a registered user, follow these steps:
- go to the Browse drop-down menu
- click on Giveaways
- towards right-hand side, click on Recently Listed
- filter by Print Giveaways – as opposed to Kindle Giveaways or All Giveaways
- and search for my novel, Requiem for the status quo.
Be certain to read the description of the giveaway that I’ve created. I want you to be clear on what it is I’m offering for free.
Goodreads does all the work in acquiring names and shipping information, they’ll notify me of the six randomly selected Giveaway winners, then I’ll send out a copy of my novel to six lucky winners within a week’s time.
You’ve got nothing to lose…what are you waiting for?
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!
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.
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 […]
- 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.