Carole Mulliken provides this month’s review of the book, The Inheritance for The Caregiver’s Voice REVIEW. If you are a caregiver for a person with Alzheimer’s, you know that caregiving can be a 24/7 in-your-face challenge. Sometimes, it lasts for decades. The Inheritance is a sweeping saga of the ill-fated Galen and Gail DeMoe family. The DeMoe Family of North Dakota The DeMoes moved to Tioga, North Dakota, so Galen could work in the booming oil fields. It was profitable but dangerous work for a healthy, hardworking, conscientious man like Galen. The couple raised six children in Tioga. The DeMoes were a “salt of the earth”-type family and the centerpiece of the town. Their home was large, loud, and riotous with all the growing children. It was always open to others who came to eat Gail’s delicious and ever-present cooking and to talk. Close family, financial security, and the respect of the whole town revealed a charmed life. That is until Galen developed Alzheimer’s disease while working on the oil rigs. Galen’s mother Wanda had unknowingly passed onto her son the mutation of a gene that guaranteed he would develop Alzheimer’s disease in midlife. Younger-Onset Alzheimer’s Devastation Younger-onset Alzheimer’s emerges at a point when a person is at peak earning capacity as DeMoe was. During a time when he has the greatest financial and family obligations, his devastated family must cope with his total care. Severe personality changes, mood swings, incontinence, aggression, and violence take over. What is it like to have to move a forty-five-year-old brother into your home? To feed, clothe, entertain, supervise, and change his diapers? To dodge his accusations and remember to keep a solid piece of furniture between you lest his blows connect with you? The DeMoe family knows. Incapacity, personality changes, total dependence, and early death would soon follow. Research into Younger-Onset Alzheimer’s The Inheritance also follows the work of many dedicated and courageous medical researchers. Huge budget cuts and non-supportive professional communities burdened their research. Some trekked through the dangerous Columbian countryside seeking extended families of people with the autosomal dominant mutation causing younger-onset Alzheimer’s. They collected family histories, vials of spinal fluid, blood samples, and sometimes brains carried in plastic pails. One female researcher, kidnapped by guerillas, ordered her captors to keep her samples chilled until her release. Incredibly, they did. Notable was Dr. Francisco Lopera, who trudged on foot over winding and muddy footpaths to find the many affected people from the Paisa region of northwest Columbia. These genetic sleuths hoped to discover which of the twenty- to twenty-five thousand genes had mutated to cause Alzheimer’s. Meanwhile, biochemists labored to develop tracer molecules to stain brain tissue slides for microscopic study. The challenge was finding a molecule capable of slipping through the protective blood brain barrier. If they could stain the amyloid plaques and tau tangles clogging neurons, researchers might learn enough to prevent, treat, or cure Alzheimer’s. Statistics throughout the book convey the urgency of finding a cure. Author Kapsambelis’ compelling story of the DeMoe family underscores the shattering impact of younger-onset Alzheimer’s. She sees the DeMoes as courageous and heroic in their commitment to travel to distant research facilities. They were scanned with radioactive isotopes. This allowed researchers to follow the progression of plaques and tangles, whether they had inherited the mutated gene or not. Some agreed to donate their brains post-mortem. Only one of the six children escaped the inheritance. All six and their many children decided to make a difference in the lives of future families. They all contributed to research to find a cure. The Inheritance is journalist Niki Kapsambelis’ first book. Her research is well-documented. She weaves the DeMoe family members’ colorful story into a vivid tapestry as she breathes life into our scientific understanding. A worthwhile read to understand what caregiving families for people with younger-onset dementia may experience day to day. The Inheritance- A Family on the Front Lines of the Battle Against Alzheimer’s Disease by Niki Kapsambelis – Amazon.com- Books Carole Mulliken is a retired writing teacher and moderator for a message board for the Dementia Advocacy and Support Network International, the first international online support group for people with dementia. Its archives include more than 35,000 messages.

Our Dementia Diary: Irene, Alzheimer’s and Me Rachael and Irene were supposed to live a long and happy life, retire and travel the world. But a thief called Alzheimer’s visited in 2004 and began tearing apart the lives they had carefully built for a quarter century. This is a remarkably honest story of the enduring love between two people coping with uncertainty and the eventual loneliness of losing a spouse. The author, Rachael Dixey, professor at Leeds Beckett University copes by keeping a journal—a way to release her feelings. She ties these entries with “interpolations” to make sense of it all. She wonders if a more appropriate title might be Fifty Shades of Dementia. Dixey manages to find strength amidst the tears to take care of herself and find the humor. She hires in-home caregivers for Irene while she works (for sanity). When Irene is hospitalized and then placed in a care home, she visits almost every day and soon realizes the toll it takes when Irene recognizes her and says, “I love you” and the next day, forgets and walks past her in the corridor. During the nine-years, from Irene’s diagnosis to her passing, Rachael writes of the full range of emotions—from the love she and Irene shared to missing Irene, feeling lonely as a singleton, dating (nothing lasts but gives her strength to be stronger for Irene), and even contemplating Irene’s death. Through it all, she visits Irene regularly, cares for her, feeds her, and feels Irene in every room of their house. She recounts with humor the folly of dealing with social services. Irene attends adult day services in a county that only covers healthcare and receives healthcare in a county that covers social services such as adult day care. After almost a year, they work it out where she feels assured of not losing their home. Meanwhile, she takes time off periodically. The time away gives her greater appreciation for what she and Irene had despite some funny (in hindsight) foibles during her travels. She recounts the good times they had going on “epic walks,” camping, exploring the mountains, trees, and sunsets. She misses those quiet mornings together. She struggles to remember the bad unusual behaviors for five years before Irene’s diagnosis at age 57. Home movies help her see the beginnings of Irene’s inexplicable behaviors. She’s able to piece together those embarrassing outbursts when Irene would storm out of restaurants after finding something wrong with her meal. She recalls the desperate cries at home when Irene couldn’t find a piece of clothing she had worn for several days in a row (likely because Rachael removed it for washing). And yet, Irene’s heart-wrenching cry early on returns to her from time to time, “I don’t know who I am anymore. Please help me.” Written by an author based in the UK gives us Americans a refreshing expression of care between partners. Her writing is characterized as informed humility. We gain greater awareness and knowledge of what it’s like to live with Alzheimer’s while feeling the angst and pain of losing her soulmate. Written by one of a gay couple gives us an endearing portrait of how love among LGBTs is no different than love among (dare I say, traditional?) male-female partners. Oftentimes, because of ongoing discrimination, the bond of their love seems stronger. I’m glad she chose to write, Our Dementia Diary – Irene, Alzheimer’s and Me and that her and Irene’s story is being shared. The LGBT caregiver’s voice is one that needs to be heard.

One of the more grounded and realistically approachable books for family caregivers and the professionals who support them.

Author and caregiver, Judith Henry, and her siblings may feel like meshuggenehs as they juggle care for their parents with humor and love. Many oy vey moments make The Dutiful Daughter’s Guide to Caregiving a fun read for caregivers who need information in easy-to-digest portions. FUNNY Highlights She describes in detail her father’s irrational behavior and the doctors say there’s nothing wrong. She tells them, “There is something amiss when a family of five has four people taking meds to deal with the one person who isn’t.” (Chapter 12) Respecting your parents despite embarrassing moments in public. “My Dad Was a Lousy Tipper” offers a surprise twist at the end. “We Were Never the Waltons” invites us to read, knowing that many of us also did not come from a family like the mountain family portrayed in the popular 1970s TV-series. Here, she offers some of the most palatable yet nonjudgmental suggestions with humor for collaborating with siblings that I’ve seen. HELPFUL TIPS “Deconstructing a Life” is a phrase that aptly describes what we children do after one or both of our parents die, leaving a lifetime of accumulated possessions. “In My Father’s House There Are Many Boxes” describes how the siblings handle this in a creative and healthy way. For example, they invited their mother’s friends to choose a favorite piece her artwork before selling the rest. The friends share stories providing priceless memories. And there’s that not-to-be-missed side story about the orphan shredder. The one-paragraph on Medicare benefits in chapter 15 gives the caregiver a quick overview without being bogged down. Her three steps for choosing a skilled nursing facility in this same chapter are enhanced by her own experience following these steps. She recognizes the reader may grow overwhelmed and expresses nonjudgmental humor at the end of chapter 3 about the documents every family caregiver needs. “Whew. This was a lot to take in and I think you’ve had enough reality for one chapter… Right now, go take a break. Hug your cat or kid or partner. A glass of wine might also be in order, unless you’re reading this at breakfast. Then again, who am I to judge?” DEALING with DYING and GRIEF She includes several chapters on grief and loss. In the “Using Laughter and Hospice in the Same Sentence” chapter she writes, “Broaching the subject of hospice with parents is not about giving up hope. It’s about making the most of the time they have remaining….” She wonders if she should have included the chapter, “What Love Will Bear.” I’m glad she did because I found it one of the most moving chapters of her book. She admits to being just as stubborn as her father is, and perhaps draws on this as a source of strength, when she remains present until the end of both of her parents’ lives. She even accompanies the gurney carrying her late mother to the hearse. She begs for forgiveness when she writes, “What a comfort to know [guilt] is not just for Jews anymore.” Yet, she has done a remarkable job of helping people feel okay with whatever direction they choose in their lives. In “The Cone of Uncertainty” chapter, she portrays with sensitivity how all is not as together as it seems on the surface. Despite her own tears at unexpected moments, she manages to navigate her way through grief and loss while reframing her life in the shadow of her parents’ legacies. Her father used to ask, “What have you done of any consequence, today?” She replies, “Daddeo, I have written this book.” I’m glad she did and I’m sure countless caregivers will also be glad. The Dutiful Daughter’s Guide to Caregiving is worth reading by family caregivers and the professionals who help them.

The Clarity BT914 is marketed with a number of features including amplification, big buttons, and bluetooth. Does it fulfill its advertising promises?

Percussive massage therapy can be one soothing self-care tool for caregivers during a five-minute respite. The Caregiver’s Voice reviews Theragun’s 4th generation quiet Elite model.

With more of us wanting to age at home, four authors offer tips to help us think about and prepare to safely manage activities of daily living and more.

The Caregiver’s Voice will be publishing an updated Caregiver Resources page. The list will initially feature organizations focused on the needs of family caregivers and medical professionals caring for people with dementia. Our National and International Organizations and Local and Regional Organizations pages will be consolidated into the forthcoming Caregiver’s Voice RESOURCES page. At the bottom of this new Caregiver Resources page, you will find instructions for adding your organization and sponsorship options for enhancing your listing. We will be celebrating our 20th Anniversary in 2018. This will be the start of our ongoing improvements to TheCaregiversVoice.com during our anniversary year.

Kayla provides hours of therapeutic purpose, affection, and nurturing for people with memory impairment due to Alzheimer's or other forms of dementia.

At Death’s Door brings to life the end of life. Many of us remain unaware of the important issues families face near the end of life. What does a DNR/DNI entail? What are the leading conditions that lead to irreversible decline? Who has the legal right to make decisions regarding our healthcare? What options does a person with dementia have to make decisions? What role does a hospitalist play at the end of life? Authors Sebastian Sepulveda, MD and Gini Graham Scott bring to the forefront the issues doctors deal with at the end of life. At Death’s Door is a real eye opener. Over time, eating processed foods, smoking, drug and alcohol abuse, obesity, and a sedentary lifestyle have a cumulative irreversible effect on our bodies. An emergency admission to the hospital could lead to other complications. We could die. At Death’s Door outlines three primary conditions that lead to a terminal condition – a massive stroke that severely affects brain function, respiratory/pulmonary diseases, and cardiovascular disease. The authors distinguish between congestive heart failure, heart attack and cardiac arrest. Brain damage occurs quickly after the heart stops beating. They touch on a fourth condition that sometimes leads to a terminal diagnosis – cancer. When we’re admitted to the hospital, a hospitalist, like Dr. Sepulveda will attend to us. This doctor coordinates care among other doctors and even handles end-of-life care. One refrain throughout the book is the importance of making a decision about a DNR/DNI (Do Not Resuscitate/Do Not Intubate) order. While some families fear that a DNR means no further measures will be taken, the authors clarify what this means. They offer a balanced cogent discussion of the legal issues. They address the ramifications of heroic measures on a patient without a DNR who is likely to die within a day or two. They walk that fine line between reducing pain (a palliative measure) and hastening death (still illegal in many states). While this book could easily serve as a classroom text for medical students, families who want to avoid stressful scrambling in a crisis situation at life’s end are well-advised to invest in a copy of At Death’s Door to review and keep at home. Digesting the pages will help families prepare, which will then bring them peace of mind. It may also inspire living better. Doctors must grow tired of seeing patients return after continuing the same bad behaviors. For example, Victor in the “Alone and In Denial” chapter kept coming back for treatment while irresponsibly spreading disease. There was Jack who instead of taking steps to improve his health, kept laughing off the ill-effects of obesity. One can’t read At Death’s Door and wonder if HIPPA laws have gone too far or have become too rigid. When a doctor cannot discuss a patient’s health with family members, the doctor may be left without an important detail. The authors relate an instance where a seemingly high-functioning lucid man consented to emergency surgery. Complications arose and the medical team then consulted the family after the patient was unable to given informed consent. The doctor learned the man was living with dementia. What legal ramifications are there when a seemingly lucid individual was later found to have dementia and therefore was not competent to give consent? Knowing our society, even more stringent measures will likely be put in place. Religion, culture, and values often play in end of life decisions and not all family members will agree. For this reason, it’s important to prepare in advance. Visit the publisher, Rowman & Littlefield for a copy of At Death’s Door Visit Amazon.com for a copy of At Death’s Door

A Life Saver. A 360-view from two insiders, both MDs who offer tips of what to look out for and how to have an optimal experience with ER. A must-read.

Guest blogger, Eric M. Riddle, reviews Click 'n Dig for The Caregiver's Voice... a clever device and well made for remotes and small pets.

Conversation Cards – resource for engagement Shadowbox Press does it again. First their picture books that engage and comfort and now their oversized deck of 52 Conversation Cards. As soon as the box arrived, I opened the Conversation Cards for Adults and began asking my husband questions. After couples have been together for (many) years, we stop listening. Did I just admit this? These cards add a fresh dimension to our conversation–a refreshing way to listen closely. Imagine, even after 34 years! I felt like we were on a date, again; exploring and learning fresh details about one another. Shadowbox Press created these with the idea of encouraging reminiscing and storytelling. If you’ve ever experienced those uncomfortably long quiet times when you feel like conversing, instead of sitting together, in silence; these Conversation Cards are the answer. There are nine questions in the back of each card—some closed-ended and others open-ended, facilitating discussion. As a long-time member of High Desert Toastmasters club, I brought these cards along for our holiday party. We have a one- to two-minute exercise called Table Topics and these Conversation Cards worked nicely as we learned more about one another and our members’ family and friends. Truly FUN! Children can use the questions on the backside of these cards to learn more about Grandma and Grandpa. Adults can take time to learn more about their parents. Most importantly, anyone who can converse will benefit from these cards. I referred to these cards while visiting a residential care home, where two new ladies were residing. I neglected to bring the cards but remembered some of the questions. As we hit that quiet moment, I talked about the cards, and began asking some questions. We learned a bit about one another among smiles and laughter. I promised to bring them next time… but my Toastmasters Club wants them, too! Whether you’re an Activity Director or Social Worker in an adult day care center, assisted living community, or even in a nursing home, I recommend having a set of these Conversation Cards on hand for simple ways to engage those who live with dementia such as Alzheimer’s. Also, if you are the VP of Education of one of the 16,600 14,650 Toastmaster’s Clubs worldwide [TCV Update 5/24/2022: Number of members and URL updated] needing to freshen your Table Topics session, invest in a set of these for about $30. Shadowbox Press’s set of Conversation Cards is a simple yet slightly structured way to engage the people in your life through reminiscing and storytelling without those uncomfortable silent moments.

The Family Guide to Aging Parents is a must-have resource for family caregivers and the professionals who help them. Carolyn Rosenblatt, RN, Elder Law Attorney offers an independent and balanced view of the spectrum of care options and issues families will face as their parents age. Her key message throughout is that we must take small steps over time to intervene. Otherwise, a crisis will occur and we will find ourselves in “panic and extreme stress.” Who wants that? Much less, who deserves that? If you’re willing to take steps now to prepare, here’s what else you’ll find beneficial. Self-contained chapters to address your needs wherever you may be in the caregiving continuum—caring for your parents from a distance to helping them find nursing care and everything in between including her steps with compassion to limit elder driving. A comprehensive yet neutral approach. Nothing is off the table including questions such as: What if I decide to hire an independent home-health care worker and not pay taxes (e.g., Worker’s Compensation)? What should I not expect from assisted living (due to licensing restrictions)? Who are the more frequent perpetrators of elder abuse and why? Sprinkling of her own experiences, successes, and failures enhances her connection with her readers. For example, she looked for quality care for her 92-year old mother-in-law who still lives independently 600 miles away. After researching Geriatric Care Professionals (she shares guidelines especially about licensing), the first was unreachable and later found to have been out of town. The second turned out to be a more professional choice. In another example, Rosenblatt describes how she and her psychologist husband weighed the pros and cons in their lives before choosing to buy long-term care insurance. Despite her choice, she admits it’s not for everyone and explains why—an example of her balanced approach. Including resources within the text of each chapter right where she discusses them for easy and immediate reference—especially, for eBook readers. She also includes resources at the end of each chapter and others in the Appendices. I wish the paperback edition featured: Chapter titles along the page headers to facilitate easier navigation for this resource book, instead of title and author. Subheadings that are easier to read instead of the faint gray type. These two book design elements do not diminish the value and benefit of Rosenblatt’s work for families and the professionals who guide them. Whereas, resources sometimes skew to reflect their authors’ professions, biases, and even agendas, Rosenblatt offers us one of the more balanced resources to come along in a long time. Although, I give away almost all the books we receive for review consideration, her book will have a home on my resource shelf. Click for more information about Rosenblatt and her work through AgingParents.com

The Caregiver's Voice reviews four In 30 Minutes guides for caregivers who want to learn more about LinkedIn, Google Drive & Docs, Genealogy, and Crowdfunding

From their days enjoying Daytona Beach to the present, Robert Benson, the eldest child of Peggy Jean Siler Benson, admits his mother knows a storm is coming, but there’s little she can do about it in Moving Miss Peggy. The storm will wash away Miss Peggy’s life history. After pulling together to juggle care for Miss Peggy and with the help of professionals, the family determines criteria that will be important in choosing where Miss Peggy will live most comfortably. Once their mom is moved in, the family learns that Miss Peggy’s routines (getting her hair done every Tuesday at the salon across town) are the only things left in her life that she can control. They wonder about all the hours spent (wasted?) doing these time-consuming things for her, when they realize: It will not be long before we will all wish we could pay such a price again and again, when we cannot. In an interesting twist, the author alternates the first person with a third-person narration. When referring to his wife, for example, Benson writes: Miss Sara is the woman who is kind enough to make a home and life and a marriage with the writer of this book. Although not distracting from the storyline, it does take reading a few passages to get used to. Benson’s family comes to the painful realization many children face while caring for their parents: It is a difficult moment when you realize that someone who raised you, cared for you, cheered for you, stood by you in moments both large and small in your life, someone who once seemed to hold the whole world in her hands now does not know the day of the week, cannot make a list, or any of the other little things it takes to manage her life. Through author Robert Benson’s eyes, Moving Miss Peggy gives us hope that family members can combine their strengths to do what’s best for a loved one. The attractive hardcover edition will make a nice gift for the caregiver in your life who is embarking on a journey through dementia with a loved one. Visit Abingdon Press to hear Robert Benson talking about Moving Miss Peggy in a 4-minute video.

Adamia – silky smooth velvety soft lotion for caregivers. Lotions are as diverse as the people who use them. Some prefer scented while others, unscented. Some demand special creams and lotions for their face, around the eyes, hands, feet, and body, while others look for a do-it-all lotion. Some use whatever is available; others need a bit more Tender Loving Care (TLC). I fall into the second category—those who prefer an unscented lotion that does it all with TLC. Adamia is marketed as therapeutic repair lotion for residents in senior living facilities who experience skin tears and other skin breakdowns. I decided to try this myself after volunteering as a bartender for a community fundraiser. Part of my duties included retrieving sodas, beers, and water from four oversized ice-filled buckets. By the end of the evening, my nails were torn due to the bitter numbing cold, my skin had cracked, and my fingertips were bleeding. Next time I’ll wear my navy blue heavy-duty rubber gloves. Might be a bit unnerving for the customer, though! How different is this than caregivers who wash and rewash their hands multiple times a day while caring for loved ones? Hand sanitizer doesn’t fare much better as it dries the skin. Even disposable gloves soon give way to damaged skin. I wash my hands frequently. Even while working at the computer, I wash multiple times each day in between processing the mail and paperwork, answering the phone, after using the bathroom (don’t you?), and preparing a snack or meal. While on travel speaking at events, I wash my hands at the airport. I use hand sanitizer multiple times during flights and after shaking hands, opening doors, and more. (It may look excessive in print, but I’ve managed not to catch a cold or the flu with these precautions.) After using Adamia Therapeutic Repair Lotion for two months: Adamia is gentle enough to use everywhere. Despite the warning to not get it in the eyes, I experimented with a little around my eyes. Unlike more costly eye creams, I felt no stinging sensation or need to rub my eyes. In fact, before a dehydrating flight, I’ll dab a little around my eyes and nose. Everyone is different. Test it for yourself. Unlike hypoallergenic unscented products, which have a chemical smell, Adamia has a subtle pleasing natural aroma. Although marketed as non-greasy, it goes on with a shiny film, initially. Rub it in a bit until fully absorbed. Adamia is silky smooth and velvety soft. It feels good. Who knew, Macadamia nuts produce oils that closely match our skin oils. To remember the name, skip the first syllable–mac–of macadamia. Having the opportunity to try Adamia, a macadamia-oil based lotion from Australia, I believe I’ve found the ideal lotion. Available at Amazon.com. Click on Adamia Therapeutic Repair Lotion to treat the caregiver in your life to a bottle and don’t forget one for yourself, too!

A print toolkit also available online to help people prepare to properly care for people with dementia and/or disabilities during disasters and/or emergencies.

Kayla provides hours of therapeutic purpose, affection, and nurturing for people with memory impairment due to Alzheimer's or other forms of dementia.

Tryn Rose Seley’s 15 Minutes of Fame is wisdom delivered elegantly. Her idea is so simple even a caregiver can do it! The best ideas are often so simple we knock ourselves on the head and ask, “Why didn’t I think of that?” Well, professional caregiver, photographer, and musician, Tryn Rose Seley did think of it in her attractive book, 15 Minutes of Fame (Empowering Caregivers [for] those with Alzheimer’s). Seley has spent her life with people who need care, from her early childhood with her brother to caregiving in private homes and care communities. Seley has developed simple techniques that transform the cognitively impaired person’s anger and discomfort into peace and acceptance. How does she do it? In her introductory remarks, Seley writes: As a caregiver, I share one photo, one song, [or] one story about that person’s life every day, all day, whatever we’re doing. That’s all? Just one photo? One song? One story? When you read her book, you realize how in 15 minutes she brings people back to terra firma or “solid ground.” She explains why this technique works and why it’s important for both the caregiver and care recipient. Want a hint? In the fast-flowing river of life–sometimes. all it takes is one person who will take a few moments to connect with another, meaningfully. This beautifully crafted book makes a delightful gift for the holidays or anytime of the year. Caregiver Heart – Tryn Rose Seley’s website 15 Minutes of Fame is available on Kindle at Amazon.com

Sue Matthews Petrovski’s, Shelved is a must-read for elders considering a life-changing transition into independent or assisted living. A valuable resource for adult children to support their parents' transition and for for administrators and directors committed to making life better for residents.

An easy-to-refer to guide of the gift of empathy that will help all relationships; especially, caregiving families to find the strength to keep on caring.

Percussive massage therapy can be one soothing self-care tool for caregivers during a five-minute respite. The Caregiver’s Voice reviews Theragun’s 4th generation quiet Elite model.

Elizabeth Tierney, author of Dignifying Dementia–A Caregiver’s Struggle, has a doctorate degree; yet, she learns a journey in discovery while caring for her husband with dementia.

Connectivities.us brings caregivers for people with dementia, well-thought out and eight fun activities each month. You and your loved one deserve some FUN.

For National Family Caregivers Month, we review Merrill Lynch’s just-released 42-page Caregiving Study Report, entitled, The Journey of Caregiving: Honor, Responsibility and Financial Complexity. While we often think of caregiving as hands-on care, surprisingly, 98% of family caregivers surveyed provide emotional and social support. Only 64% report providing hands on physical care. Over 2,000 family caregivers in the U.S. were surveyed in partnership with Age Wave. The study authors were struck by the number of caregivers (92%) who help with financial caregiving; yet, 75% have not discussed the topic with their families (page 24). Few are prepared to help and do the best they can paying out of pocket or helping manage (e.g., pay bills) their loved one’s finances (page 22). Caregivers Are Generally Positive What remains encouraging are caregivers’ positive feelings. They desire to honor their care recipients and to insure they live with dignity. It’s not easy and caregivers sacrifice a lot. Forty seven percent of adults aged 40-59 are sandwiched in between raising children (they had later in life) and caring for their parents. This report is a testament to the gift of caregiving. In fact, 77% say they would be caregivers, again. Who Are the Caregivers? While more men have entered the realm of caregiving, the responsibility continues to fall mostly on women’s shoulders (66%). Women lose an average of $324,000 in wages and benefits (page 12) during their prime earning years. They provide care during their 40s through 60s and spend almost 10% of their lives as caregivers. Caring for a loved one with dementia adds to the costs due to greater needs over a longer period of time. The estimated direct and indirect costs rise over $750,000. “Direct costs include: professional caregivers, adult day care, long-term care facility, home maintenance, home modifications, grocery delivery, transportation and safety monitoring. Indirect costs include: lost hourly wages, reduced Social Security benefits and lost 401(k) contributions,” page 25. Family Caregivers Provide Care For… Most caregivers (49%) provide care for a parent with almost three times as many providing care for Mom, while 24% care for a spouse/partner. Wives tend to care for their husbands by themselves; whereas, adult children will more likely rely on help from family, friends, and paid professionals. About half surveyed have been caregivers for less than one year. Less than a quarter (24%) have been caregiving for over five years. Sixty one percent of caregivers for a parent say they’ve considered moving their parent into a professional care facility; whereas, only 46% of spousal caregivers have considered this. A reasonable assumption here (not included in this report) is a fear of spending assets, leaving the well-spouse impoverished. While 10% of people 65 and older live with dementia, they receive 40% of care hours provided by family by. The number of care hours provided for a person with dementia averages to 171 versus about 70 for a person without dementia, or 2.4 times more. About a third of the caregivers want respite, but don’t get any. What Caregivers Care about Most Family caregivers will benefit by the three ways to prepare on pages 39 and 40: Save for future health care expenses. Includes four long-term and health care options beyond Medicare/Medicaid. Talk openly with family, now. Seventy five percent have not had these discussions. Includes four topics to cover with loved ones Seek guidance and support. Five sources to reach out to for your extended care team during the marathon that is caregiving We Must Prioritize Caregiving Policies and technology innovations must adapt to changing nature of caregiving. By mid-century, the needs of an estimated 84% growth in care recipients will be met by an anemic 13% growth in the number of caregivers. With families spread geographically, dependence on professional caregivers will grow greater. But if caregivers continue to be undervalued (and poorly paid) there won’t be enough to fill demand. Technology will play a greater role in caregiving. Despite slow adoption, as caregivers grow familiar with better designed options, they’ll feel comfortable using it. Over 80% of employers say caregiving will become an increasingly important issue in the next five years, only 18% say they are caregiver friendly. The Caregiver’s Voice recommends improving the accessibility of this 42-page PDF report with clickable bookmarks and endnotes to make it easier to navigate across the chapters, subsections, and citations. The Journey of Caregiving: Honor, Responsibility and Financial Complexity is available for download at the Merrill Lynch website. Click on button “Get the full report” A worthy read and reference to return to and help guide future policy initiatives. Caregivers must be supported; especially, spousal caregivers who are doing it alone.

A self-effacing author pays respect to her mother who defied convention. In 2011, author Tinky Weisblat began a one-year quest to journal her experiences caring for her 92-year old mother Jan (Taffy) Weisblat who was living with dementia. She includes photos and recipes throughout Pulling Taffy – A year with dementia and other adventures. By the end of the year, both she and her mother conclude their respective journeys leaving the reader with a sense of loss after feeling a part of their family for the duration. In 1945, Taffy, a Christian, married Abe Weisblat, a Jew, after their parents suggested they remain engaged for a year before entering a “mixed marriage.” Their marriage lasted until Abe’s passing–53 years. Taffy was a strong-willed woman just over 5-feet tall who left a major impact on her son and daughter and primary caregiver, Tinky. College-educated, Taffy’s independent spirit helped her work around the world with her husband. Despite author Tinky’s self-effacing humor, she is a woman of letters going on to receive several graduate degrees. Still, she enjoys singing and cooking. In fact, reader beware, Pulling Taffy can be fattening with tantalizing recipes like Ghost Cookies, Irish Cottage Soda Bread, and Spinach and Artichoke dip. Tinky didn’t expect to be a caregiver, initially. Like so many caregivers, she grew into a role, which wasn’t easy at first. She discovers: I began by writing about what I was losing. Somewhere along the line I started writing about what I was finding…a burden was transformed into a privilege. With this discovery, Tinky and her mom overcame the challenges with periods of FUN—enjoying nature, cooking together, playing the piano and singing together, reciting poetry, and enjoying the company of visitors. Tears of frustration turned into tears of tenderness. Pulling Taffy is truly an enjoyable read, which made this reviewer smile a lot. Tinky’s conversational style and self-effacing humor is a welcome counterweight to the strength of her late mother.

Connectivities.us brings caregivers for people with dementia, well-thought out and eight fun activities each month. You and your loved one deserve some FUN.

An old-fashioned paper tool for planning caregiving tasks may be better than remembering a password for online access. Easy. Simply open to the applicable page.

Percussive massage therapy can be one soothing self-care tool for caregivers during a five-minute respite. The Caregiver’s Voice reviews Theragun’s 4th generation quiet Elite model.

Curated Article Excerpts - People with Dementia Can Still Learn, Keys of Truly Confident People, Elder Orphans, FINGER study, and Caregiving Language to Uplift

Find out which assisted living and Alzheimer's care communities are America's best in 2013 -- based on reviews from caregivers like you.

Many still don't understand the real purpose of hospice. Judith Sands clarifies what it is, who its for, the personnel involved, and more for caregivers.

An inspirational memoir built around the author’s poems while she kept a promise to her late father and lovingly cared for her judgmental mother at home.

inspiring, enjoyable, and enlightening account of a New England widow who finds true love in the second half of life even as a #caregiver, once more

NYMI SOJO puts voice to local urban caregivers' stories which would otherwise stay indoor between caregiver and care-receiver.

The Spiritual Life of a Caregiver Guest article by Dr. Carol Peters-Tanksley One year ago, my caregiving journey ended as I washed my husband’s closed eyes and kissed his lifeless hands. Al would never have wanted to call me his caregiver, but as his illness progressed that’s what I increasingly became. I felt the full weight of decision-making, loss of sleep, uncertainty about the future, and a dozen other daily overwhelms. Only in the weeks after his death did I fully appreciate how exhausted I had become. As a professional myself I understood how important it was to care for myself well enough so that I would be able to care for him. I did that far from perfectly. One of the best words I’ve been able to come up with for how I felt was weary – weary physically, weary emotionally, and weary spiritually. Yet I knew enough about myself and about how God made us as human beings to embrace the nurturing of my inner being as most important. My Christian faith and relationship with God did not make caregiving easy, but it made it possible and priceless. Three Spiritual-Life Tips for Caregivers These three spiritual-life tips supported my caregiving. I believe they can benefit you, too. Regular Soul Nourishment While every moment caring for and being with Al was valuable, it also took more and more out of me. Without regularly getting filled up again, I would have run out of juice long before the journey was over. In order to look back without regrets I knew I needed to be fully present, unselfish, resilient, thoughtful, and truly loving. You can’t give love if you don’t have any in your heart to give. Daily, I would spend some alone time with God. Some days it was only a few minutes in prayer; other times I could carve out a little more, and read Scripture. Those times alone with God were like water to a person dying of thirst. It filled me up again so I had something to draw from in meeting whatever Al needed that day. Reassurance of the Future Caring for a loved one’s physical (and other) needs easily becomes all-consuming. Whether for a few weeks, a number of months, or many years, one intellectually knows this will not last forever, but it’s challenging to raise one’s mental eyes beyond the immediate circumstances. Would I still have a life after Al was gone? Would the professional and personal essence of who I am still be there? Will my unselfish caregiving matter beyond this moment? Connecting daily with God helped me answer those questions and more. I could be assured that I would make it through this, that God saw and understood, and that both Al’s life and my own would matter in eternity. Perspective and Purpose My Christian faith asserts, among other things, that God has a purpose for me as well as for every human being. While caring for a loved one has important humanistic qualities, the spiritual dimension adds a much deeper perspective. Al was a priceless child of God who He had entrusted into my care for this season. That gave my caregiving a significance -far beyond what any merely intellectual understanding could provide. As I helped Al shower, prepared his food, took him to doctor’s appointments, or adjusted his oxygen I was fulfilling God’s purpose as significantly as when I speak on the radio or write a book that will be read by countless others. Daily time with God helped me remember that. And my faith has also allowed the journey of caregiving to deepen the well in my own soul from which I now can help others even more. Embracing the spiritual dimension makes that so much more meaningful. My faith provided invaluable resources through my journey of caregiving, and I wish for every caregiver the same riches of the soul. Dr. Carol Peters-Tanksley is a licensed OB-Gyn physician, an ordained Christian Doctor of Ministry, former radio talk-show host, and published author. She practices part-time and devotes the rest of her time to writing and speaking. She lives in Austin, Texas, and enjoys being Grandma Carol to four wonderful grandchildren. Find out more about Dr. Carol and Dr. Carol Ministries at DrCarolMinistries.com.

Author Ronda Parsons serves as her mother-in-law’s devoted caregiver in Creating Joy & Meaning for the Dementia Patient. Nan’s mind is slowly slipping away due to dementia and Ronda discovers ways to bring purpose and joy to her life. The Parsons family moves Nan into a nearby assisted living community and later into memory care. Meanwhile, Ronda visits almost daily in an act of grace and to help Nan preserve her dignity as the disease takes its toll. In the chapter toward the end of the book on Going Home, Ronda writes, “Nan and I have entered into that odd time of preparing, she for a journey and me bracing myself for the time when all the pieces of her will have blown away like scattered seeds from a later summer milkweed.” As the seeds scatter, Ronda becomes “the CEO of Nan” and ensures her mother-in-law’s medical and care teams know about Nan before dementia to help them provide better care. Within the first 21 pages, I kept saying to myself, “Yes, YES, she’s right on target!” Ronda’s story is our story or the story new caregivers aspire to share. Ronda discovers ways to positively approach caregiving, by drawing on emotional memories and the five senses, creating beauty and bringing nature to her Nan. Yet, what motivated Ronda to care so deeply, while trying to make her mother-in-law’s life purposeful and joyful? Was it because she lost her parents too early in her life? Was it because Nan treated her as her daughter? She could have emphasized her motivation, more. Toward the end of the 200-plus page book, Ronda writes with passion about our human need, regardless of circumstances, to feel dignity. She also inspires the reader with examples of God’s grace. Sometimes the smallest gestures are the most meaningful like when an elderly stranger presented her and Nan with a gift of a doll, while Ronda struggled to help her mother-in-law get in the car. It worked. Although, she was not the typical family caregiver charged with 24-hours-a-day 7-days-a-week care (this makes a big difference in managing energy and outlook as a caregiver), I was impressed by her loving and unconditional care for Nan. At times I wondered, would her words inspire or intimidate? She rarely touched on her frustrations—those moments we caregivers want to scream. In one of the last chapters on caregiver self-care, she mentions the hardships. Perhaps, she relegated these struggles the same way she described how Nan handled her life’s struggles—as mere footnotes. Despite her loving regard for her mother-in-law, I was distracted by Ronda’s repeated use of two labels—”dementia sufferer” and “dementia patient.” We’ve made great strides in reducing the stigma of dementia over the 20 years I’ve been in this field and most of it is due to the language we use. I would have preferred to read, “person with dementia,” “patient with dementia,” and “person suffering from [condition] due to dementia.” This focuses on the person while relegating the disease to where it belongs—in second place. Ronda’s observation of the nature of dementia is compelling, particularly when she describes it as a tug-of-war between short-term and long-term memories. She created the Moment by Moment technique, which keeps her focused on bringing joy and purpose to Nan during the moments they’re together. Even while Nan screams during the entire time it takes Ronda to wheel her from the doctor’s office across the street, through the parking lot, and into the memory care center, Ronda opts to find the humor in this inexplicable situation. This daughter’s story of devotion to her mother-in-law and use of diverse metaphors, make her points more vivid and memorable such as in the chapter, “A Positive Approach,” where she writes, “Together in our tiny boat called Hope we have navigated the great rushing river of dementia.” Her focus is clear in each of the chapters—to make sure Nan finds joy and meaning despite what is lost to dementia. She tells moving stories (beyond her and Nan) that set meaningful context for the reader and summarizes each chapter with a list of insights. Creating Joy & Meaning for the Dementia Patient is filled with ideas and tips that can be put into practice immediately.

I wish I had these interactive books for memory impaired adults while caring for my father. I know he would have spent hours perusing the photos, reminiscing about things deep in the recesses of his mind. For example, the Statue of Liberty picture in the America [TCV Update 11/5/2023: Direct URL to America book broken; see instead this Eight-Book-Set link] book would have prompted memories of his experience coming to America through Ellis Island. These picture and large print books by Matthew Schneider and Deborah Drapac, BSN, RN at Shadowbox Press stimulate answers to questions we may not even think to ask. Take Evelyn, who was a caregiver to her husband until his passing over a decade ago. During recent years, she’s been living in a residential care home. I gave her the Dogs and Puppies book knowing how much she loves animals—especially, rabbits and cats. However, Shadowbox Press the publisher of these creative interactive books doesn’t (yet?) offer a picture book with cats or rabbits. Upon opening the Dogs and Puppies book and looking at a few pictures, Evelyn began talking about her dog Tsar. As she paged through the book, she talked about the other dogs throughout her life. I’ve known Evelyn for thirteen years and never knew dogs had been a part of her life. What a delight to see her smile as she recounted parts of her life that would have otherwise been lost. Since not all the residents can read, I began reading from the Bible Verses book to the eldest resident, whose smile grew larger as she recalled her childhood— “Papa” would work hard all day and in the evenings the family would gather ’round and read from the Bible. These are just two of the eight books by Shadowbox Press. Others include: Colors, Wild Animals, Fun and Games, Flowers, and Seasons–all common and easy-to-discuss topics. What a wonderful way to spend time with our loved ones. Each of the eight books is organized the same. Brief stories (less than 100 words) with large photos comprise the major portion of each book. In the back, are thumbnails of each photo with conversation starter questions (both closed- and open-ended) followed by a section of activity ideas—like taking a walk in a dog park or visiting a church. Although the authors’ biographical information is not included in these books, the website includes the following: At Shadowbox Press, we have collaborated with a team of writers, artists, photographers, librarians, health-care professionals, and most importantly, individuals and families, to develop a series of interactive books developed specifically to engage [adults with memory loss]. See all of the eight books at Shadowbox Books that Engage and Comfort. Brenda Avadian, MA Alzheimer’s / Dementia Caregiver, Expert Spokesperson, Coach, and Author Editor, TheCaregiversVoice monthly Newsletter and The Caregiver’s Voice Book Review