Caregiver
Meet Sue Anne W. Kirkham, author of Loving Zelda – A Stepdaughter’s Caregiving Journal
by Sue Anne W. Kirkham
How it all began:
It was late October when my husband, Jack, and I showed up at my father and stepmother’s townhouse to walk their two dogs—a duty we’d taken on several months earlier, after they announced they no longer felt up to the task. At 84, my father suffered from respiratory and circulatory problems; at 81, my stepmother showed early signs of dementia, with some Parkinson’s-like tremors erupting, just to keep things interesting. I was determined that they not be forced by these circumstances to give up their pets. On this day, Dad greeted us at the door with another shocker. “We have to move into assisted living.” No hello. No how ya doin? Just this stark declaration.
Dad and Zelda had always been younger than their years in every respect. He continued his career as a psychologist into his late 70s, and the warm, witty, delightful woman he married in 1972 had always been active and ready for a new adventure. Each enjoyed absorbing hobbies, and they eagerly traveled the globe together for most of their 32-year marriage.
As Jack and I herded the pups that chilly autumn day, I remained troubled by the prospect of a radical change in lifestyle for my beloved father and stepmother. So I hatched a plan: leave my dreary clerical position and devote myself to lightening their load and injecting some sparkle back into their lives. I would carve out a new weekday vocation as companion/housekeeper/social director/exercise coach/assistant cook.
I kept a journal from Day One as, over the next 18 months, Zelda suffered incremental losses of mental acuity. Less noticeably, my father’s COPD was cranking toward a dramatic climax that none of us anticipated. While I focused on finding enough fingers to plug the ever-multiplying holes in the home-front dike, Dad’s staunch self-sufficiency propelled him through his own physical deterioration. Meanwhile, I watched Zelda—former organizer of Fourth of July kitchen band marches—fade into confusion. To be at her side through the slow, agonizing loss of her Self would prove to be the most affecting experience of my life. It soon became clear that the course I was chronicling was strewn with striking contrasts: moments of high hilarity and wrenching despair; snapshots of the struggle for dignity in the face of decline; arcs of mood between fear and optimism, gratitude and resentment. Hobbling my efforts to navigate these troubled waters was the crushing blow of friends and family members challenging my motives, questioning my trustworthiness.
This enterprise had much to teach me about life and death, human limitations, faith, and endurance. The struggle, as they say, was real. But the joys and rewards were every bit as genuine.
Why I wrote about it:
As my time with Dad and Zelda ended, a fresh commitment shaped my mission: I had been seeking a book topic I felt passionate about. This was that subject. I would share our experiences, unique amidst all the universal similarities, to promote understanding and support others confronting the challenge of caring for those who once cared for us. I chose the memoir format because, as dementia robbed Zelda of her voice, my journal became the story; it painted a complete and authentic picture for readers. Memoir also allowed for the interweaving of family history, a fleshing out of characters, and a means of affirming through narration the individual’s continuing worth, untainted by the loss of physical and cognitive abilities.
ABOUT THE AUTHOR
Sue Anne Kirkham is a freelance writer who blogs atwww.yourrecipesforlife.com. She has published print articles on aging and family relations as well as online profiles of inspiring everyday heroes, and essays on health-conscious living and the peculiarities of contemporary culture.
FOLLOW THE AUTHOR:
FOLLOW THE AUTHOR:
Author website: www.lovingzelda.com
Author Facebook page: @LovingZeldaCaregiving/
Twitter: @SueAnneKirkham1
LinkedIn: Sue Anne Kirkham
Status Quo or Same-O Same-O
How often have you felt defeated because your day-to-day existence is somewhat routine and boring?
The life of a family caregiver, attending to a loved one with a disease or malady that is all-encompassing, is never Same-O Same-O. Any semblance of status quo flies out the window shortly after taking on this learn-as-you-go caregiver role. The boring life about which the family caregiver used to complain no longer exists as she or he memorializes that long-abandoned way of living. My memorial to status quo existed while attending to my father during his Alzheimer’s journey.
Requiem for the Status Quo speaks of that memorial to things that once were.
One Week Only: discounted books about Alzheimer’s and other dementia
AlzAuthors is celebrating their four year anniversary as an entity by offering many discounted books for an entire week, but that’s not all. The Longest Day – which starts this discounted week-long period – is known in the Alzheimer’s community as a day to celebrate and honor those with the disease, and those who have passed from the disease.
AlzAuthors honors each caregiver – past and present – who has experienced the struggles inherent with helping a loved one with Alzheimer’s disease or any other disease under the dementia umbrella; they are offering this discounted book purchasing opportunity to everyone who might benefit. If you know of someone in that category, please share this post with them – you will be doing them a great favor. Click right here to discover the discounted prices, then click on the book cover (or covers) of the books you wish to purchase, and you’ll be directed to the purchase page for each book. It’s that easy!
Time to fill your bookshelves with discounted books about Alzheimer’s disease
Starting Friday, June 21st, the longest day of the year AND The Longest Day as celebrated in honor of those who have Alzheimer’s or other dementia or who have lost their lives to this always fatal disease, several AlzAuthors will be discounting their books so you will want to fill your shelves – virtual or otherwise – with several excellent sources of support.
These authors will generously discount their books for an entire week. Set your calendars so you don’t forget!
The link to these discounted books will be provided soon!
Sustenance for the family caregiver
In a recent interview with Oprah Winfrey, New York Times columnist and author, David Brooks, eloquently responded to Oprah’s statement where she said, “I hear that authors write the books they need to read.” Mr. Brooks’ response:
We writers are beggars who tell other beggars where we found bread.
He further explained that statement by saying:
We found it here, we want to share it with you.
That is what the more than 200 AlzAuthors have in common. Each author may describe their quest or mission somewhat differently, but no doubt many of them would agree that the impetus to write about their personal experiences was a call to action they could not ignore.
As a member of the AlzAuthors community, I personally feel that the more mainstream the conversation surrounding the Alzheimer’s and dementia experience becomes, the more the AlzAuthors’ vision will be realized:
Our vision is to lift the silence and stigma of Alzheimer’s and other dementias.
May you find sustenance within the AlzAuthors community.
A wealth of books about Alzheimer’s disease
AlzAuthors is a community of more than 200 extraordinary authors who have written about Alzheimer’s disease and other dementia. Today I am spotlighting those books written by the community’s supportive management team, of which I am a member. Please take time to visit the six books spotlighted below. I truly believe you will be glad you did. Let AlzAuthors light your way through Alzheimer’s and dementia.
Alzheimer’s Daughter – a memoir by Jean Lee. A poignant accounting of a family’s life after both parents were diagnosed with Alzheimer’s disease on the same day.
Blue Hydrangeas – an Alzheimer’s love story by Marianne Sciucco. A touching account of a couple’s journey into Alzheimer’s and of the love that never succumbed to the disease.
Somebody Stole My Iron: A Family Memoir of Dementia by Vicki Tapia. This engaging memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas and tips for managing the day-to-day ups and downs of dementia.
Weeds in Nana’s Garden by Kathryn Harrison. A heartfelt story of love that helps explain Alzheimer’s disease and other dementias geared toward the children in our lives.
Motherhood: Lost and Found – a memoir by Ann Campanella. A memoir of the ordinary and extraordinary courage of those who endure debilitating and even crushing illness, and those who suffer with them when they do so.
Requiem for the Status Quo by Irene Frances Olson. A novel that explores the delicate balance of families upended by Alzheimer’s disease and how they manage their loved one’s needs with their own.
Hurry while supplies last! Discounted price!
Requiem for the status quo was picked up by a publisher two years ago this month. The eBook and audiobook will continue to be available on Amazon through Black Rose Writing until the end of 2019. I am arranging for different publishing options for the paperback version, however, and will be releasing that paperback later this year.
In the meantime, my publisher and I reduced the paperback price for the month of February so those who want to add this book to their library can do so at a discounted price. If you are a Prime member, shipping is FREE! When I self-publish my novel I’ll be sure to send out an announcement so you’ll again have access to the paperback version through Amazon. And of course, the eBook is still available on Amazon and will continue to be available forever and a day. (I will self-pub the eBook at the end of the year.)
Let these recent reviews encourage you to get your copy today!
Jill W. I’ve never written a review when I’m only halfway through a book, but I wanted the author to know sooner rather than later, how much her book has affected me emotionally. My family has been dealt the dreaded card of dementia so reading REQUIEM FOR THE STATUS QUO has been difficult since we’re living Coleen and Patrick’s nightmare now. I find myself only able to read pieces at a time because the author has done a superb job of making Patrick and his family’s battle with this horrible disease, so real. Last night as I read, I found myself laughing and then crying. This book is a must read for anyone touched by Alzheimer’s or dementia.
Ann C. Irene Frances Olson writes believable fiction. Her characters are kind, funny and endearing — even in their flaws. When Colleen takes over her father Patrick’s caregiving because of his advancing memory issues, the reader can’t help but be moved by the tender relationship between them. The effervescent Colleen finds herself in a challenging life situation — pulled between her father’s condition, her working life, her brother’s disdain for her father’s illness and her own desire for companionship. Having experienced the devastation that Alzheimer’s can bring to a family, it was both heartbreaking and a joy to follow Colleen’s path. Yes, there was loss, but the author helps us see the beauty and courage in facing the inevitable challenges of aging and how it’s possible to do it with grace and love.
Jason This book is about the many faces of Alzheimer’s, from those how bear the thief in their brain to those who must cope with and care for loved ones. The story is straightforward and written with love, it is a daughter’s anthem of love for her father while also being a support for others facing the journey of incremental loss. Colleen describes it best when she identifies Alzheimer’s as a thief robbing us of our memories and our future. If you or a loved one are walking this journey, this story is sure to give both a sense of how to make this journey possible and how to mourn with others on the path.
Time’s running out: discount book sale ends late 11/13
All of the books shown in this graphic are part of the AlzAuthors Caregiver Appreciation week-long sale, starting today, November 7th. You’ll see my novel, Requiem for the status quo, in the upper right corner that is priced at 99 cents from Nov 7th through 13th. To link to all the books you see above, click on the AlzAuthors link here. Simply click on the book’s image and it will take you directly to its page on Amazon, making it extremely easy to purchase as many titles as you please. And don’t forget to gift others with titles as well. It’s so easy to do and the recipients of your gifts will be so pleased that you’ve thought of them.
The Alzheimer’s Community
I have been closely involved in matters regarding Alzheimer’s disease and other dementia for eighteen years now: long-term care (LTC) housing, memory care, Alzheimer’s support group facilitator, and Washington State LTC Ombudsman. But it took me becoming a published author of a novel that focuses on a family’s Alzheimer’s disease experience before I finally found my Alzheimer’s community.
AlzAuthors is a group comprised of over 170 published authors (as of this writing) who have published fiction and non-fiction books reflective of their personal Alzheimer’s experience. The six members of the AlzAuthors Management Team (Team) is the Alzheimer’s community about which I speak.
The Team’s motto says it all:
We can sing a lonely song, or form a choir and create harmony.
Without exception, the authors featured on our site and each member of our Management Team had the experience of struggling with the learn-as-you-go-task of caring for someone with cognitive impairment. We all made mistakes, and we learned from them, but we also had successes, and we celebrated them.
As a recent addition to the AlzAuthors Management Team, I became even more convinced that my personal Alzheimer’s community resides within this group. The support, the kindness, the giving nature reflected within the Team is incomparable in my experience, and we are not just keeping it to ourselves. AlzAuthors is spreading their influence into numerous parts of the world…which is kinda why they asked me to join the team as their Global Outreach Coordinator. The six of us know our presence is evident in more countries than just the United States, but our imagination and passion is boundless so we have set out to become a household word in small and large communities throughout the world.
Why AlzAuthors? Because this 100% volunteer group has brought together some of the best books on Alzheimer’s and other dementia in one central location: our bookstore. We’ve categorized those books to make the personal caregivers’ or professionals’ shopping experiences an easy one with categories such as: Caring for Parents or Grandparents, Caring for Spouses or Partners, Living with Dementia, and Children and Teen books, to name a few. We know a caregiver’s “free” time is limited or non-existent, so we’ve done our best to make their shopping experience an easy one. They simply click on the cover of the book they’re interested in and they are taken directly to Amazon to make the paperback, eBook, or audiobook purchase.
We’re working hard so you don’t have to.
And finally, we understand the journey of unpaid (family & friend) caregivers because:
- We have experienced the loss of a loved one with dementia.
- We know the pain of being forgotten.
- We all have witnessed decline.
- We have provided countless hours of caregiving.
- We know many others have experienced the same and we believe in the power of sharing those stories.
Kindness Fridays
This week’s kindness spotlights the Women’s Fiction Writers Association (WFWA) a fabulous group for writers of women’s fiction. Most if not all the administrative staff is volunteer – the reason why their kindness is this week’s selection. As a member of this organization, I was given the opportunity to have a podcast recorded for their Hear Me Roar program because I’m a debut author. Although my novel, Requiem for the status quo was released a year ago, it was my debut publishing effort.
This podcast is approximately 30 minutes in length, and although my novel is certainly the focus, much attention was spent on the prevalence of Alzheimer’s and other dementias in the world. Perhaps this podcast will keep you company on your commute in the next few days; although it may seem a bit choppy, I think it’s worth hanging in there to hear my, and the host’s, provocative discussion.
My novel’s 1st anniversary
Requiem for the status quo‘s anniversary is the perfect opportunity to announce my involvement with a fabulous project focused on Alzheimer’s disease.
I am one of over 150 authors from around the world who will be represented at the Alzheimer’s Association – Western Carolina Chapter’s Dementia Education conference in Charlotte, N.C., this August. I, and over 25 other AlzAuthors, have donated copies of their books, which will be given away in a raffle to conference attendees.
I wanted to support this cause because during my caregiving experience in the early 2000s, I most definitely could have used more fiction about Alzheimer’s to normalize my day-to-day stresses, and some up-to-date non-fiction to help my learn-as-you-go caregiving experience. Something else from which I surely could have benefited is the non-profit, AlzAuthors. AlzAuthors.com is a nonprofit website that shares information on books and blogs about Alzheimer’s and dementia. I am proud to say that I, too, am a member of this fine organization. Had it been available prior to my father’s death from Alzheimer’s disease, I no doubt would have tapped into its resources.
AlzAuthors started in 2015, when Founders Jean Lee from Ohio, Vicki Tapia from Montana and Marianne Sciucco from New York, who had also written books about Alzheimer’s, met in cyberspace. They discussed the growing need for resources about dementia. A year later, after Shannon Wierbitzky joined the team, the group started a website and published posts from 60 authors. In 2017, Canadian Kathryn Harrison and Ann Campanella from North Carolina joined the administrative team.
Since that time AlzAuthors has published weekly posts, sharing resources about books and blogs that focus on Alzheimer’s and other dementias. The site has grown to include over 150 AlzAuthors from around the world and has a bookstore with a vast collection of top books for individuals, doctor’s offices, assisted living facilities and other eldercare services. AlzAuthors also has a thriving presence on Facebook, Twitter, Instagram, and Pinterest. AlzAuthors Jean Lee and Ann Campanella, whose memoirs were recently named to Book Authority’s Best Alzheimer’s Books of All Time List, will share “The Story Behind the Stories” of AlzAuthors at the Alzheimer’s Association conference.
“Together We Can,” the Dementia Education Conference held by the Alzheimer’s Association – Western Carolina Chapter, will take place on Wednesday, Aug. 29, from 8:00 a.m. to 4:00 p.m.at the Friendship Missionary Baptist Church, 3400 Beatties Ford Road in Charlotte, N.C. The event is geared for healthcare professionals, caregivers, people living with Alzheimer’s or related dementia and members of the general public. Attendees will learn more about research, caregiving practices and tools to assist in the journey with Alzheimer’s. For more information, visit ALZ.org/NorthCarolina or call 800-272-3900.
For more information about AlzAuthors. visit their website: https://alzauthors.com/.
National Alzheimer’s Month Book Deals
September is World Alzheimer’s Month. READ THIS ARTICLE CAREFULLY TO DISCOVER HOW YOU CAN WIN A FREE COPY OF MY NOVEL, Requiem for the status quo.
Several of the AlzAuthors group of writers who have written fiction or non-fiction books on the subject of Alzheimer’s or other dementia are offering special, discounted offers to those who would like to get ahold of a select group of books being offered September 27 – 30, 2017.
I am a member of this group of writers and am offering a total of eight free copies of my novel, Requiem for the status quo: four (4) free Kindle eBooks and four (4) free paperback books (the latter available to residents of the United States only). All you need to do is Like/Follow my author Facebook page, then write a comment in the AlzAuthor post that appears on that page.
In order to get in the drawing for a free Kindle eBook or free paperback copy, you must indicate in the comment section which format you would prefer: Kindle eBook or paperback. Please don’t say you don’t care which format you receive; for accounting and distribution purposes I will only put your name in one of the drawings so be sure to specify your preference.
All those Liking my page and posting a comment indicating their format preference will have their names entered into a drawing that will take place at Noon, Pacific Standard Time, on Saturday, September 30th. I will Messenger the winners through FB to request either your e-mail address (for eBook sending) or postal delivery address (for paperback book shipment) so that I can send out your complimentary book copies the first week of October.
But I am not the only author offering great deals on books – all the books contained within the graphic on this post are discounted during the September 27 – 30th timeframe. Be sure to go to the AlzAuthors website, click on the Bookstore tab, locate the author and their book being offered at a discounted price, click on the photo of their book and you will be directed to the site where their discounted book can be purchased. Since I am personally offering free copies of my novel – as opposed to doing so through an Amazon.com promotion – you will not find Requiem for the status quo in the AlzAuthors bookstore during this promotion.
Do Not Ask Me To Remember
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.
Victories in Caregiving
The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.
Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable. Sometimes the unpredictability brings heartache and extreme difficulty.
However …
sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty. Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.
Caregiver Stress – no one is immune
Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP. The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving. A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”
Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment. Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing. She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.
In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second. “No way,” you say, “my mom/dad/spouse come first; they need me!” You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them. That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.
Most of us learn the hard way. We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno. Do yourself – and your loved one – a favor. If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself. You will benefit from such care, and so will your loved one.
Finding respite in the 21st century
Dissecting disconnection: Why I’m taking the week off tech.
Monica Guzman, Seattle Times writer and blogger, is going off the technical grid for a week – thus the article attached above wherein she analyzes our habits and impulses when it comes to us feeling the need to be instantaneously on top of matters. She’s not disconnecting from all technologies – she intends to watch television and might use a real camera – but she’s staying away from “the ones that know me.”
Ah, respite – what a delightful concept. Lots of us Baby Boomers equate respite to receiving some sort of relief from our caregiving tasks. For example, we might be taking care of a parent, sibling, partner, or spouse and we look for every opportunity for a reprieve from our caregiving chores – or at least we should be. Please see my article Caregiver: put on your oxygen mask first.
Respite, however, also relates to resisting the compulsion to send someone a Happy Birthday greeting by sending an e-mail, or going to the honoree’s Facebook page, or sending a Tweet on the person’s Twitter feed – and instead, deciding to call that person for a conversation that lasts longer than it takes to type a 140 character greeting. OMG, MIK? (Oh my god, am I kidding?)
No – I’m serious. I could make it harder on you – and myself – by suggesting that we send a birthday card that would require us to purchase, write, post, and drop the card through the slot of a postal box. I think that would be a great idea, mind you, but that’s not what I’m proposing.
Rejoice in the fact that Facebook reminded you of that person’s birthday. (I know that you received sufficient notice not to miss that person’s birthday because truth be told – that’s how I remember many of my acquaintances’ birthdays each year.) But please resist the urge to send an instantaneous electronic greeting. Think of yourself – I know you can – and think of what it feels like to receive fun mail, such as a birthday card, or simply a “there’s no reason for this card” card. You liked that feeling – didn’t you? Now I want you to also think about how it feels when someone calls you to personally wish you happiness – just you and the person that called you. That’s a one-on-one attention connection.
Drop a note, make a call, but leave the 140 characters for some other important message, like:
I had a glazed doughnut and a cup of coffee for breakfast then washed my hair and can’t do a thing with it! Isn’t that just the worst thing ever?
Go ahead and count – there’s 140 characters there.
Baby steps towards Alzheimer’s diagnosis
Amyloid Scanning Protocols Fail to Get the Nod from CMS.
I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.
Stillness gets us no where. Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias. During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.
Caregivers – this message is for you!
No Matter What, I Simply Cannot Get Sick!.
Fellow blogger, Don, talks about his caregiving journey with his wife in which he swore off getting sick because – quite frankly – he couldn’t afford to be sick when his caregiving duties required that he be healthy and available 24/7.
One could argue that just being worried about getting sick might make one sick, but fortunately, that was not the case for Don. Having read many of his articles, it appears that he knew what was required of him as a caregiver – the same thing that is required of all of you who are still on your caregiving journey: assemble a team, spread out the duties, and seek emotional and physical support in whichever form you need.
First and foremost, please read Don’s article attached above. After you have done so, I hope the three articles below will also prove beneficial towards providing direction on how one might assure a successful medical and mental health caregiving journey. When you take care of yourself, you’ll be better equipped to take care of your loved one.
Alzheimer’s Answers; Are you ready to be a caregiver?
Alzheimer’s Disease: Your Questions Answered | PBS NewsHour. We need all the help we can get in order to make well-informed decisions about any caregiving journeys that might occur in our future. The attached article shows a snapshot of one adult daughter’s 24/7 caregiving journey with her mother.
Perhaps you’re saying that you don’t anticipate your parents requiring any caregiving assistance in their frail years (perhaps your parents have already passed so no need exists there.) Do you have any siblings? close friends? a significant other? If you answered “yes” to any of those designations, the possibility exists that you will be called upon – or you’ll volunteer – to be of assistance to someone who needs help with their activities of daily living (ADLs).
Taking care of a loved one is no easy task. It doesn’t matter how much you love the person, your patience and your abilities will be tested. I truly admire the subject of this PBS article. Rebecca Wyant is the full-time caregiver and guardian of her mother, Mary Wyant, who was diagnosed with Alzheimer’s at the age of 65. Mary moved in with her daughter in 2006, is now 74 years old, and Rebecca is in her seventh year of personally providing her mother with full-time care.
How does Rebecca do it? She thought she was prepared for the task but soon discovered that finances, and creative ways of managing her mother’s care, are dwindling resources. With that said, however, Rebecca states that she is the only person who can provide the care that she can. She agrees that professionals could provide the care, but absolutely no one could possibly care for mom as Rebecca can. That part of the video disturbs me a bit, and I’ll tell you why.
I was an Alzheimer’s Association caregiver support group facilitator for several years and heard the voiced concerns of those daughters, sons, and spouses, who carried a great deal of guilt on their shoulders for not being able to keep up with the care of their loved one. They did provide the care initially, and then found their abilities wanting – and their health declining. They eventually made the very difficult decision to place their loved one in an assisted care setting.
Here’s the story of “Constance” and “Robert.” Constance first came to my support meeting at the age of 80 having already taken care of Robert at home for the previous three years since his diagnosis. Constance’s health started to decline due to lack of sleep – Robert’s dementia had no respect for the clock. Added to that dilemma was the fact that she had no existence outside of her house. She was trapped! Her friends abandoned her, all the social activities in which she had participated fell by the wayside, but she refused to move her husband into an assisted care setting, even though she felt they had the finances to support such a move – many do not and have no choice but to provide 100% of the care. “No one can take care of Robert like I can. I would never do that to him – placing him in someone else’s care. That’s my duty as his wife; a duty I take seriously.”
Fast forward one year later, and Constance had no choice but to place Robert in an adult family home with five other residents; it was either that, or she would have been forced to relinquish her caregiving role because, quite frankly, she ran the risk of dying before Robert. Once she relocated Robert to a care home, the well-trained staff provided all the assistance Robert needed, and Constance could now have the sole role of being his wife. She visited him almost daily until the day he died one year later.
Constance admitted that she wished she had moved Robert to the adult family home earlier than she had because she realized that being a committed wife didn’t have to include caregiving that risked her own health. She relished her reprised role as his loving wife when she visited him – none of the other care staff could fulfill that role but her – and the staff did what they do best, providing all the care her husband needed.
This is the nugget I want you to come away with from my above commentary: guilt and obligation are normal emotions that might prevent you from making decisions that may very well be in your best interests and those of your loved one. Please believe that allowing someone else to take care of your loved one does not equate to you shirking your familial duties. It does, however, tell me that you know your limits, and you know what is best for your personal situation in the long run. Additionally, it shows that you value your long-standing role as a daughter/spouse/partner/sibling, more than any new role as a care provider. There’s something to be said about retaining your given role in a relationship.
Caveat: as I indicated above, finding affordable care outside of ones home is no easy task, and you may have no choice but to provide the needed care for your loved one. But if you are able to find trusted family or friends who can “spot” you from time to time so that you can enjoy a needed time of respite, please do so. You’ll be far more able to carry out your caregiving task if you take care of yourself first. See my article: Caregiver: put on your oxygen mask first.
There’s an App for that!
A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones. For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.
Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load. Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.
But does such monitoring invade the loved one’s privacy? Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring. Or do they? What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life. But I digress.
At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place. The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly. If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away. In reality, however, medication mismanagement might be taking place, carried out by the parent.
The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day. The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening. I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it. HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits. Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.
I’m skeptical of Comfort Zone but I’m also its fan. I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation. My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past. A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few. More disease control financing = more cures.
One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences. So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden. Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind. Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible. I’m sorry to burst your bubble – but it’s true.
The Morning After
The Morning After: Caregivers Experience of Loss and Their Struggle for Identity.
Perhaps you read the brief title of my article and before delving into its content you’re wondering: The morning after a night of drinking? The morning after doing something regretful – perhaps synonymous with the previous question? The morning after a horrific news event?
None of the above. In the attached article, a fellow blogger writes about his experience of waking up the day after his wife passed away; a day in which he felt the full impact of the loss of his wife and the cessation of his role as her caregiver – his identity for so many years.
Unless, and until, you experience this type of blurry identity, you can’t fully understand the feeling. Those of you who devoted any amount of time caring for a loved one prior to their death understand all too well the emptiness and lack of purpose that oftentimes follows the end of the caregiving journey.
I was the long-distance caregiver for my father after he was diagnosed with Alzheimer’s disease. He lived in a memory care unit of a Southern Oregon continuing care retirement community (CCRC) while I commuted from Seattle by plane, by telephone, and by 24/7 worrying and thinking. By choice, I left my full-time job and for the next four years, dedicated my time to managing his care and being the primary on-site visitor. Many of you worked full-time at your “real” job while being a caregiver for a loved one and I respect and honor you for somehow juggling all of those responsibilities. I knew my limitations, however, and reached that limit quite early in the process. The emotional and physical toll of caregiving was more than I was capable of handling on top of my other job, so with my husband’s blessing and encouragement, we did without my financial contributions while I carried on as my father’s care person.
After my father’s October 13, 2007 death at the age of 89, I returned to Seattle having spent the last hours of my father’s life at his bedside; then several days wrapping matters up with the funeral home; with the bank trustee, and with the facility in which he had lived for close to thirteen years. Although there would be many weeks of tying up loose ends upon my return home to the Seattle area, I was effectively unemployed – laid off from a job to which I was extraordinarily committed. As the blogger in the attached article mentioned – those in this position wake up the day after, and the day after the day after, feeling as though they have lost their purpose. Additionally, the identity which defined them for several years no longer applies.
Grieving and re-purposing our lives can take place during this time, a process which may take months or years; a process that is as individual and unique as ones fingerprint. As the blogger wrote in his article, he appears to be transitioning in a way that utilizes his years of being the primary caregiver and advocate for his wife. He’s recreating his working life; reshaping it to fit the caregiver role in which he flourished. Like this blogger, I too quite naturally segued into employment positions in which I could continue on the path that I had started years earlier with my father: elder advocacy, Alzheimer’s Association volunteerism, and most recently, putting all of those past and present experiences down on paper in the form of a novel.
But that is not necessarily the norm. Some of you may have felt the need to totally disassociate from anything remotely related to the caregiving or care managing roles. I understand that decision and I agree 100% that it’s the right thing for you to do. Again – how we recover and/or regenerate after the caregiving experience is a distinctive aspect of our ongoing lives. What we do have in common, however, is that we have all experienced the morning after the end of our caregiving journey. Whether we’re relieved, angered, aggrieved, or a combination thereof – the morning after is unavoidable.
In closing, I want to celebrate you – the caregiver heroes who are ordinary people, who did the ordinary right thing, at an extraordinary time. You are a hero to many, and you are a hero to me.
Caregiving and the Challenges of Travel
Caregiving and the Challenges of Travel: It Can be Stressful for Both of You.
Read the above article if you’re not convinced that traveling with a loved one who has dementia can be challenging. Or read it if you too have experienced this particular type of stress because you have already ventured into the travel hell that this Blogger describes. I make that statement with no disrespect intended. It doesn’t matter how much you love your co-traveler, it doesn’t matter how wonderful your destination – getting there is not without its mishaps and aggravations for both the caregiver, and the cognitively impaired traveler.
Then there is the other side of the coin: imagine that you are a person with mid-stage Alzheimer’s or other dementia who is not accustomed to staying put – you actually wander constantly when you’re on the ground – and you’ve been put on an airplane by yourself and you have no concept of what is taking place. You don’t have the capacity to understand that this metal tube in which you are sitting is a confined space and trying to “get home” is not an option. If you can’t imagine that scenario read the attached article, Alzheimer’s “exit-seeking” behavior at 35,000 feet, an article I wrote shortly after returning from Bar Harbor, Maine in October 2012.
Don’t Go It Alone! The Importance of Caregiver Support
Don’t Go It Alone! The Importance of Caregiver Support.
The article above by a fellow blogger who recently lost his wife due to complications of dementia, echos my sentiments about the need to invite others to join you on your caregiving journey. Walking the path alone is not only inadvisable, but in most instances, it’s impossible. With so many unknowns waiting around the corner, every caregiver needs to enlist the help of those who can effectively support him or her, and as a result, provide much needed assistance to the one being cared for.
I’m a firm believer of team support, as I stated in my article: Caregiving: The Ultimate Team Sport. Another article, Solo Caregiving, provides encouraging ways in which to recruit team members when there are no family members on which to rely.
Taking care of yourself is not selfish. Developing a team of caregiver-helpers goes a long way towards taking care of numero uno – YOU!
New roommate paradigm: adult children & their parents.
Historically, it’s the adult children who move back into the parents’ home, oftentimes because of financial issues. Apparently that is no longer the sole definition of multi-generational living.
In a USA Today article, Who’s moving in? Adult kids, aging parents, Haya El Nasser writes, “(A)bout one in seven say they already have a ‘boomerang kid’ – an adult child who moves back home – or elderly parent living under their roof.”
This brings about two unexpected events:
- The parents who enjoyed their empty nest and started to reestablish themselves as a couple, instead of just as parents, suddenly have an adult living with them who just happens to be the kid they gave birth to 30 years ago; or
- The adult child who strove to establish his home with his spouse and their 2.5 kids suddenly have a parent living with them requiring just as much attention, if not more, than the young children they themselves brought into this world.
The USA Today article above focuses on a rising trend towards families deciding to purchase larger homes than they would have previously considered with the anticipation that it would be more economical to have other adult family members living in – and contributing to – the same household. Talk about a paradigm shift! Stephen Melman, director of economic services at the National Association of Home Builders says, “I remember when I was in college, no one wanted to be near their parents.” That thought certainly resonates with me. When I was single in my 20s and early 30s there was no such luxury of renting a place on my own and living-at-home was definitely not an option. At one time I had two roommates so all three of us shared the same bathroom, kitchen and common living space. Inconvenient and not as private as we would have liked? Certainly – but the only way to afford housing and have the ability to put away money for our future was to split costs with other like-minded adults.
A Pew Research report earlier this year showed that “the share of Americans living in multi-generational households is at its highest since the 1950s.” OMG! As a Baby Boomer who was born in 1953, I just have to repeat, “OMG!!!!!”
My focus today is on the caregiving issue – that adult children and/or Baby Boomers find themselves with the added responsibility as caregiver to a loved one. In my article Start your retirement – start your job as a family caregiver I address the caregiving aspect of Baby Boomer retirement which sometimes evolves into multi-generational living. Our quality of life definition tends to change as family caregiving is added to our lives. But it’s a fact of life for many of us and one that very few can escape. But herein lies the problem…
Most of us aren’t prepared for that eventuality. Those of us who are counting the days until retirement kid ourselves into believing that caregiving happens to others, not to us. And our adult children find it difficult to wrap their minds around that type of living scenario whilst in the midst of their hectic career development and ever-changing family dynamics.
So what happens? We find ourselves in an emergent situation that requires immediate action that may not be well-thought out because we don’t have the time to make a well-informed decision. We all know that the worse time to make a life-changing decision is in an emergency. There is a wealth of information available at our fingertips – the worldwide web is replete with helpful resources. Even this website has many articles written on the subject. As you browse through this website’s categories, be sure to enter a search term in the “Search My Site” box located at the right-hand side of each content page.
I’m not suggesting that you finalize plans that might not be implemented until many years down the road – or at all. What I am suggesting, however, is that we all become aware that a) these issues exist and could very well happen in our own lives; and b) we’re going to do what we can now to make wise decisions later.
I Can’t Win.
For those of you who have not experienced the stresses of caregiving, or being the point-person for a loved one with dementia or other debilitating disease – please read the above-linked article. It will give you a wee taste of:
a) the toll that caregiving takes on loved ones;
b) the toll of being a spouse with someone with dementia; and
c) the extreme frustration of trying to communicate with professionals while coordinating care for your loved one.
Please read this article – it will give you a healthy respect for your coworker, neighbor, family member – who is on duty 24/7 with caregiving tasks. Whether the caregiver is performing these tasks long-distance, as was the case for me in relation to my father’s care, or performing them on-site, the task is monumental and deserves a great amount of respect and understanding.
The Silent Cry of the Caregiver – AARP
Challenges of Providing Care for Spouse or Parents – AARP.
A 2012 issue of AARP The Magazine contained an exceptional and gritty article about caregiving. The focus is primarily on the role a spouse plays in taking care of a dying spouse – in this case, a wife with ovarian cancer – but the caregiver may also be attending to an ailing spouse or parent with a debilitating disease such as Alzheimer’s or other dementia.
In the article linked above, Bill Newcott discusses how he hunkered down and tried to fix what ailed his wife. The first paragraph of the article will grab you:
It’s the one vow that can really come back and bite you in the butt: “…in sickness and in health.” On your wedding day the phrase conjures up visions of tiptoeing into a sun-drenched bedroom with lunch on a tray for your wife…What you don’t expect it to mean is crouching in the harsh fluorescent glare of a hospital treatment room and holding her head to yours, trying not to faint as a technician inserts a large needle between her ribs to suction two liters of fluid from her lungs.”
The role of a caregiver is one that not many will be able to avoid. Currently across America 43.5 million people are caring for a loved one who is 50 years or older. I’ve done it. My brother’s done it. Chances are, you’re doing it too.
AARP Caregiving Resource Center is a magnificent tool for all of you who are involved in caregiving. If you’re sitting there saying you don’t have time to check out this caregiving resource, you need it more than you can imagine.
Please start taking care of yourself and check out the resources that have been developed just for you.
New ad campaign portrays caregivers’ call for help
New ad campaign portrays caregivers’ call for help.
A recent NBC Nightly News story focused on the role of caregiving as adult children take on the parental role vacated by their parents.
Imagine, if you can, handling all that you normally do in your hectic life and adding between 20 to 60 more hours to your workload. Haven’t arrived at that point yet? Of this potentiality you can be certain – all signs point to that being in your future. Whether your involvement is characterized by general care for an aging family member, or specialized care for a family member with cognitive decline, caregiving is most likely a task to which you have not devoted much attention.
It is said that 1,200 people per day are diagnosed with Alzheimer’s or other dementia. Let’s re-categorize that statistic: 1,200 caregivers are created every day.
The new ad campaign, a joint project between AARP and the Ad Council, was created to address the impact of family caregiving with the graying of the population. This ad campaign seeks to provide resources for those who are thrust into this role for which they are ill-prepared.
“Although they often don’t identify themselves as ‘caregivers,’ more than 42 million Americans perform some form of consistent care for older or impaired adult relatives or friends, according to a 2009 estimate. It can range from paying bills, to driving Mom to doctor appointments, to more hands-on care such as bathing, and even tasks once left to nurses such as the care of open wounds.”
And as many of us who have been in that caregiving role can attest, ones’ active role goes on and on when behind-the-scenes caregiving occurs, dealing with finance and insurance issues and the like during our alleged “free” time; a time when others are settling down to watch their favorite TV show or to read a good book.
This extraordinary AARP/Ad Council project is broader than another effort that is part of the new National Alzheimer’s Plan that can be found on the federal government’s website, www.alzheimers.gov. But both of these projects address the loneliness inherent with the caregiving task when so many caregivers feel, and become, isolated and adrift in an ocean of frustration and despair.
FINALLY some resources are being directed to the tidal wave of caregiving issues that Baby Boomers face. It may be too little too late, but it’s more than has been available up to this point. My hope is that the generation in which our children live will have sufficient resources to deal with us Baby Boomers because if our children think this caregiving task is going to jump their generation, they’ve got another thing coming to them.
And I apologize ahead of time for what awaits you.
Ambiguous loss – the experience of caregiver spouses
The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss. I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.
The author, Pauline Boss, explains it this way: when a loved one dies, we mourn the loss; we take comfort in the rituals that mark the passing, and we turn to those around us for support. That doesn’t happen when a loved one is still alive, but the losing occurs nonetheless. And this period of loss may go on for years prior to the spouse’s final departure through death.
One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.” Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia. But if the “surviving spouse” is able to draw on the memories of their marriage, they find themselves able to love their spouse regardless of the disease. Unfortunately, the memories remembered are no longer shared memories; joint reminiscing no longer occurs. Your wedding anniversary passes without any acknowledgement by your spouse, and although that’s just one of the burdens during this long period of loss, it’s a difficult one to bear.
Caregiving is a difficult, 24/7 task. I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.
Seattle Times: Seniors for Sale, Part 5
Part 5, of Seniors for Sale: Hiding Harm: the human toll, is one example of the lack of reporting that goes on in some assisted living residential settings – in this case – an Adult Family Home (AFH).
When you watch the video link above, you’ll be shocked at how a particular accident happened – and its after effects on the victim – and you’ll be horrified at how long it took before it was reported to the police.
Perhaps this statistic will provide a partial explanation:
only 16% of all incidents of elder abuse are reported.
Not only are many caregivers not reporting incidents of abuse that occur; surprisingly, family members fail to get beyond the denial stage when they discover that their loved one just might be in danger in the very location entrusted to his/her care. They can’t believe that the caregiving solution they found for their loved one has turned out to be disastrous in every way.
The police investigator for this case states the following:
We don’t tolerate domestic violence, but that’s not always the case with elder abuse.
The final episode of Seniors for Sale will be submitted tomorrow, Saturday.
Reminiscence and reminiscence therapy
Reminiscence and reminiscence therapy.
I found the attached article very interesting and promising. Anyone who has been a family caregiver, or a professional caregiver, knows the seemingly insurmountable struggle to engage with someone who has Alzheimer’s or other dementia.
My work path in life always includes those with dementia so I will definitely look into this therapy. But let’s face it – as us Baby Boomers move onward into our future, we’re already looking for ways in which to brighten our memories when what we’re searching for may be on the tip of our tongue, but it refuses to jump off!
Living: the ultimate team sport 