Wednesday, May 17, 2017
Hello All! Here is a reading list compiled by my friend Lynda Everman. She will be giving a presentation about caregiving and Alzheimer's Disease at the Caddell Conference on June 12. Her talk is entitled, The Voice Advcating for Your Loved One.
1. ClergyAgainstAlzheimer’s Network, Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers. CreateSpace, 2014.
Seasons of Caring offers the gifts of hope, encouragement, compassion and empathy to those on the difficult journey of caring for loved ones with Alzheimer’s disease and other dementias. The book is organized around themes of seasonal transition, with each of the four seasons paralleling the various stages of life. The original writings by seventy-two authors representing a great diversity of spiritual traditions range from thoughtful meditations to poignant personal stories, moving poems and meaningful songs. Each meditation begins with an inspirational quote and ends with a prayer or words of encouragement.
2. ClergyAgainstAlzheimer’s Network and Richard L. Morgan, Ph.D., Leader’s Guide for Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers. Create Space, 2015.
The Leader’s Guide is a companion volume to be used with Seasons of Caring by facilitators of support groups. Nationally renowned author, retired pastor, and founding member of ClergyAgainstAlzheimer’s, Dr. Richard L. Morgan has drawn upon over 60 years of pastoral care for those with Alzheimer's, including his service as a hospice chaplain and a longtime facilitator for Alzheimer’s support groups to write the Leader’s Guide to help other facilitators in their groups. The Leader’s Guide takes the original themes and metaphors of Seasons of Caring and delves deeper into caregiver concerns and stories, such as communicating with a loved one, dealing with guilt and forgiving oneself, using art and music to connect with a loved one and maintain relationship, and facing the difficult issues of death and grieving.
3. Louise Carey, The Hedge People: How I Kept My Sanity and Sense of Humor as an Alzheimer’s Caregiver. Beacon Hill, 2009.
Caring for those with Alzheimer’s can be emotionally depleting. Frustration often dominates the day as you try to bridge the gap between “real life” and a person who has lost touch with reality. Combine that with grief over the loss of the person you used to know and fear of what is to come and it seems as though life will never see laughter and joy again. But it does. In her collection of true stories, author Louise Carey provides perspective and techniques for treating loved ones with dementia with respect while also finding humor in the often trying situations encountered by the caregiver. Filled with humor, warmth, and encouragement, each chapter includes a caregiver prayer, a leading question for reflection, and space to journal.
4. Meryl Comer, Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s. HarperOne, 2014.
Meryl Comer’s Slow Dancing With a Stranger is a profoundly personal, unflinching account of her husband’s battle with Alzheimer’s disease that serves as a much needed wakeup call to better understand and address a progressive and deadly disease. When Meryl’s husband was diagnosed with early onset Alzheimer’s in 1996, she watched uncomprehendingly as the man who headed hematology and oncology research at the National Institutes of Health started to misplace important documents and forget clinical details that had once been cataloged encyclopedically in his mind. Detailing the daily realities and overwhelming responsibilities of caregiving, she sheds intensive light on this national health crisis, using her personal experiences—the mistakes and the breakthroughs—to put a face to an often misunderstood disease.
5. Joanne Koenig Coste, Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease. Mariner Books, 2004.
Thirteen years after it was first released, this book remains a classic. Revolutionizing the way we perceive and live with Alzheimer’s, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls “habilitation,” works to enhance communication and has proven successful with thousands of people living with dementia. Learning to Speak Alzheimer’s also offers hundreds of practical suggestions relating to such things as making meals and bath times as pleasant as possible, adjusting room design for the patient’s comfort, and dealing with issues of wandering, paranoia, and aggression.
6. Nancy L. Mace and Peter Rabins, The 36 Hour Day: A Family Guide to Caring for People with Alzheimer’s Disease, Other Dementias, and Memory Loss in Later Life. John Hopkins, 2007 (5th edition).
Originally published in 1981, The 36-Hour Day was the first book of its kind. Years later, with dozens of other books on the market, it remains the definitive guide for people caring for someone with dementia. Now in a new and updated edition, this best-selling book features thoroughly revised chapters on the causes of dementia, managing the early stages of dementia, and finding appropriate and safe living arrangements for the person who has dementia when home care is no longer an option. A perennial best seller, and for good reason.
7. Richard L. Morgan, At the Edge of Life: Conversations When Death is Near. Upper Room Books, 2014.
Drawing on 60 years of experience as pastor, hospice chaplain, volunteer, and friend to dying persons, Richard Morgan offers perspective and advice to people coping with a family member, friend, or patient who is approaching the time of death. In only 72 pages, Dr. Morgan’s wise counsel take us from accepting our own mortality and the impending death of someone we care about through "making preparations," "finding closure," and "dying moments." His use of personal stories and scripture lead into reflective questions and prayer. The result is a sense of peace that gives readers confidence as companions to the dying.
8. Greg O’Brien, On Pluto: Inside the Mind of Alzheimer’s. Codfish Press, 2014.
This is a book about living with Alzheimer’s, not dying with it. It is a book about hope, faith, and humor. Greg O’Brien, an award-winning investigative reporter, was diagnosed with early-onset Alzheimer’s 8 years ago at age 59. Acting on long-term memory and skill coupled with well developed journalistic grit, the author decided to tackle the disease and his imminent decline by writing frankly about his journey. Greg is a master storyteller whose story is unvarnished, wrenching, and soul searching. Told with candor and courage, On Pluto: Inside the Mind of Alzheimer’s is a trail-blazing roadmap for a generation - both a “how to” for fighting a disease, and a “how not” to give up!
9. Daniel C. Potts, M.D. and Ellen Woodward Potts, A Pocket Guide for the Alzheimer’s Caregiver. Dementia Dynamics LLC, 2011.
This book is the place to turn for initial information and perspective on Alzheimer’s disease, and to return for practical advice as problems arise. Dr. Potts is a noted neurologist, author, educator, and champion of those with Alzheimer's and their caregivers. His wife Ellen has over 25 years experience in healthcare management and teaches at the University of Alabama. Together they have had 8 close relatives with dementia for whom their immediate families provided care. And, together Danny and Ellen offer clear, concise, practical, and most importantly, compassionate information and advice to help care for and improve the lives of patients with Alzheimer's and those who care for them. Their book is divided into two sections - the first with discussions of common issues and problems, and the second with an alphabetical quick reference of problems and listed responses. This is a perfect format for the often weary and distraught caregiver who has many concerns and little time.
10. Jane Marie Thibault, Ph.D. and Richard L. Morgan, Ph.D., No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia. Upper Room, 2009.
Relying on their many years of experience in the areas of aging, dementia and spirituality, authors Jane Thibault, a clinical gerontologist, and Richard Morgan, a retired Presbyterian minister, offer this book to provide a fresh, hopeful model of dealing with life and death in the realm of Alzheimer's and other forms of dementia. The authors suggest that caregivers have two basic needs: affirmation that caregiving is not in vain and reassurance that the lives of those for whom they care are not being lived in vain. They further state that care receivers need more than medical attention; they need tender care, involvement in the community, and a sense of connection with a loving God. Their perspective that caregiving is an extension of spiritual life will aid families and professionals to look beyond day-to-day routines and chores and accept their role as an opportunity to serve the total person in body, mind, and spirit. In addition to offering practical ways to help, this book serves as a reminder that every act of love brings positive transformation to the recipient, to the giver, and to the world. No Act of Love Is Ever Wasted is an excellent resource for individuals caring for loved ones as well as for counselors, support group leaders, pastors, and other professionals.
11. Max Wallack and Carolyn Given, Why Did Grandma Put Her Underwear in the Refrigerator? Puzzles to Remember 2013.
Why Did Grandma Put Her Underwear in the Refrigerator? is a sensitive, light-hearted children’s story that seamlessly provides its young readers with a toolbox to help them overcome their fears and frustrations. It shares easy-to-understand explanations of what happens inside the brains of Alzheimer’s patients, how to cope with gradual memory loss, with a missed holiday, or even a missing Grandma! This 40-page fully illustrated children’s book is told from a second-grader’s perspective in her own style and vocabulary, but it lovingly shares real strategies, scientific insights and lessons of dignity from which adult caregivers may also benefit.
12. Don Wendorf, Psy.D., Caregiver Carols: a Musical, Emotional Memoir. CreateSpace, May 2014.
Get help managing your feelings from this musical memoir of Dr. Don Wendorf’s emotional struggles as caregiver for his wife, Susan. Written in song lyric (rhyming verse) form to be easily absorbed and recalled, Don shares his personal feelings such as anxiety, anger, sadness, uncertainty, sexuality and compassion, to help other caregivers understand and better handle their own emotions. Selections are humorous, chatty, moving, informative, creative and practical. He has written Caregiver Carols to encourage other caregivers that their own feelings are tough but normal and manageable and that they are not alone.
Sunday, May 14, 2017
Remember when I said that you should "go into their world"? Today grandma thought I was her daughter. She kept calling me by my mother's name. I did not correct her, neither did my mom. We just went along with it. Sometimes, she got our names correct, and other times she was wrong. Who cares! I had fun with her. Happy Mother's Day to everyone!
Monday, May 8, 2017
I bought Fidget Spinners the other day. They are spinning toys that are supposed to help restless kids stay focused and calm. I love to spin them. I do not know if they are keeping me calm but I enjoy it. I thought it would be a good idea to try using them with grandma. She loved them. I noticed the other residents in the nursing home liked them too. I paid $ 5.00 US dollars for one. I would recommend buying a fidget spinner for your loved one with dementia. It is a simple activity, there are no batteries, and it kept us busy for a while!
Wednesday, April 5, 2017
Hello! I would like to share another article from the Queens Examiner.
LIC youth honored for service, supporting caregivers
Her mother Emma looked online to find where her young daughter could go for support by talking with other kids who were going through the same thing. She couldn’t find any.
That’s when they decided to start their own organization. In February, Hailey started a support group and blog called Kid Caregivers.
“I can tell them about how I feel about people with Alzheimer’s disease and they can respond,” Richman said. “They can ask me for help and everything. They get advice, tips and ideas from me.”
The Long Island City native, who is now in the fourth grade, said she felt sad when she found out her grandmother had Alzheimer’s. Her mother explained what it was and what could happen.
“All the memories she had of me are going to be gone,” she said.
In her blog posts, Richman frequently shares photos of her interactions with her grandma. They eat together, solve puzzles and participate in arts and crafts.
She also shares tips about how young people can help people coping with the debilitating disease. She advises caregivers to “go into their world” and not to argue.
Richman said her grandmother has sometimes called her Emma, her mother’s name, but she doesn’t correct her. She just goes along with it.
“Make the person feel useful,” Richman wrote in a February 27th blog post. “I told my grandma that I needed her help and she stopped being difficult and was happy to help me.”
Richman also said talking to them about their favorite things, what they like to do, and music also helps. One day, she put headphones on her grandma and played music from her iPod shuffle.
“Throughout the whole day, she kept singing her tunes,” Richman said. “She started talking about music from the 1940s. She started talking about true things that happened in her childhood.”
Kid Caregivers’ mission has spread around the world. Richman said her blog has viewers from Iraq, Russia, China and India. Children from Germany and Africa have participated in the support group as well.
“My favorite part about Kid Caregivers is helping people and seeing how happy they are,” Richman said. “I learned that they all have the same feelings as me and they all want to help.
“I want everybody to know that they’re not alone,” she added.
According to the Centers for Disease Control (CDC), more than 5 million people in the United States live with Alzheimer’s disease. As a progressive disease, the illness begins with mild memory loss, but could worsen to the loss of ability to carry on a conversation or respond to the environment.
Symptoms such as memory loss, getting lost, repeating questions, misplacing things and taking longer to complete daily tasks usually first appear after the age of 60, but the risk increases with age.
By 2050, the number of people suffering from Alzheimer’s is projected to reach 14 million. There is no known cure for Alzheimer’s, and it is currently the sixth leading cause of death among U.S. adults.
That means many families like the Richmans are taking the time to care for their loved ones. According to the Alzheimer’s Association, 15 million people identified as caregivers nationwide in 2015, dedicating approximately 18 million hours of care.
Emma Richman clarified that her daughter isn’t involved in the “heavy duty” and hygiene aspects of caregiving. Her role is more about mentally stimulating, entertaining and spending time with her grandmother.
In addition to running Kid Caregivers, Richman is also the assistant director of a nonprofit organization called Puzzles to Remember, which provides puzzles to nursing homes, veteran facilities, and other places that care for patients with dementia.
According to the organization’s website, puzzles have a “calming effect” on patients, and Richman said she has seen this firsthand. She volunteers at a senior center two times a week, and if she has time off from school, she visits up to four times a week.
“It helps their brain because even though the puzzles are really easy, it keeps them calm,” she said. “They solve it and it relaxes them. Solving [puzzles] improves their mood.”
All of her work didn’t go unnoticed. In November, Hasbro, the toy and board game company, honored Richman as one of 10 nationwide “Community Action Heroes.” The accolade is given to youth who have demonstrated qualities like kindness, courage and leadership in their communities.
Each honoree received a $1,000 educational scholarship and a $500 grant to their selected nonprofit.
“I feel amazing and super excited,” Richman said about winning the award.
With the $500, Richman said she will help purchase more puzzles to distribute at nursing homes and care facilities.
Richman also received the President’s Community Service Award and the Giraffe Project Heroes Award. On December 12, Richman appeared on ABC’s “Good Morning America” with actor Will Smith, who was talking about his inspiration behind the film “Collateral Beauty.”
On air, Richman spoke about her work helping people with Alzheimer’s disease.
And she’s not done yet. Richman said she’s working on a prototype for an invention called an alert system for walkers that will, hopefully, prevent dementia patients from falling. She came up with the idea after her grandma fell and hurt her eyes and nose.
“I thought if she had a walker alert all that time, we could’ve prevented her from falling,” Richman said. “We’re getting the parts and we’re constructing it.”
She’s also planning to write a book that will include a “caregiver’s kit” on how to care for someone with Alzheimer’s disease. She hopes that it will be published within the next year.
“To those much has been given, much is expected,” Richman said. “It means that since I have a lot, I try to give back. I know what it feels like to have somebody with dementia, I thought I could help other people.”
Read more: Queens Examiner - LIC youth honored for service supporting caregivers
Hello Everyone! I am very happy to share the news that I am the "Kid of the Month" in Amazing Kids Magazine. Here is the actual link:
Amazing Kid! of the Month – Hailey Richman – April 2017
By Victoria Feng, Assistant Editor and AKOM and Money Smarts Editor
Hailey Richman, 9-year-old founder of Kid Caregivers and assistant director of Puzzles to Remember
Hailey Richman, 9-year-old founder of Kid Caregivers and assistant director of Puzzles to Remember
Quote of the Month
“Do not give up; do not be afraid to try something new. Believe in yourself and your abilities.”
-Hailey Richman, 9-year-old founder of Kid Caregivers and assistant director of Puzzles to Remember
-Hailey Richman, 9-year-old founder of Kid Caregivers and assistant director of Puzzles to Remember
April Amazing Kid! of the Month
April is when spring is in full swing. Just like the saying goes, it really is a time for April showers and May flowers. This not only says the days are rainy, but it symbolizes that we should always sprinkle a bit of love and kindness into everything we do. This April, Amazing Kids! Magazine challenges you to spread kindness everywhere and to everyone.
After caring for her grandmother with dementia, Hailey Richman wanted to help raise awareness about helping a loved one with the disease. She has started the organization Kid Caregviers and was appointed assistant director of Puzzles to Remember. These both help those with Alzheimer’s by encouraging caregivers to spend time with their loved ones and give them fun activities to do.
Read on to find out more about Hailey and her organizations!
Caring for Her Own Loved One
Hailey’s grandmother was diagnosed with Alzheimer’s disease when Hailey was four. Hailey helped care for her grandmother and found ways to make patients feel the most comfortable. Having Alzheimer’s does not define your life, and like Hailey says, you are still a person with feelings, just like anyone else. Patients still deserve to be cared for. She advises that Alzheimer’s patients may not remember things as well but that patients are still able to have fun despite their condition. Hailey mentions that happy times can still happen.
For Hailey, her interest in helping create a bond between patients and caregivers started with her own experience. She took care of her grandmother and provided hours of companionship and care. She knew that there were other caregivers, like kids, who were also in her situation and wanted to help their loved ones the best they could.
Unfortunately, there seemed to be no program available for kids wanting to talk to other kids about their experience caring for those with Alzheimer’s.
So, Hailey took matters into her own hands.
Solving for a Solution
Taking care of loved ones is something that is very important to Hailey, particularly kids as caregivers. So, she started the organization Kid Caregivers. It allows kids to share their experiences with one another and exchange advice and stories. Some kids might not know what to do if someone they know has dementia, and Hailey’s support group is a great place to find answers and get helpful advice.
In addition to informing kids, Hailey also brings friends to nursing homes, where seniors may feel lonely. She focuses on pairing kids with those who do not receive visitors. The Kid Caregivers and seniors have lots of fun together, doing activities that include listening to music, playing with HASBRO JOY FOR ALL robotic pets, and working on puzzles together.
Hailey believes that solving puzzles is great for those who have Alzheimer’s. It helps exercise their minds and stimulates a part of their brain that is responsible for controlling their mood. Hailey also mentions that it gives seniors with Alzheimer’s a feeling of purpose and allows them to have a goal to complete. She has started collecting puzzles and brings them to nursing homes. She not only donates puzzles but spends quality time working on the puzzles with seniors.
Her work attracted the attention of Max Walleck, who started the organization Puzzles to Remember. It, too, helps those with dementia. Max collects puzzles, which he distributes to nursing homes. To date, he has collected over 4,000 puzzles. Hailey was inspired by his work and got the inspiration to collect puzzles.
Max recognized all of Hailey’s hard work by awarding her the position of Assistant Director at Puzzles to Remember. Together, Hailey and Max aim to provide more and more seniors puzzles and make them comfortable.
Continuing to Bridge a Connection to Those with Alzheimer’s
Hailey was awarded the GenerationOn and HASBRO Community Children’s Action award. She is really honored and excited that more people will know about Kid Caregivers and Puzzles to Remember, enabling Hailey to reach more and more Alzheimer’s patients.
Currently, Hailey is working on innovations which will benefit the Alzheimer’s community, like a memory device to prevent seniors from falling. She is also working on a book.
You, too, can help out seniors in your community by visiting nursing homes near your community. Spend a fun afternoon together working on a project or solving a puzzle, or even just talking.
Together, we can make a difference.
We wish Hailey the best of luck and know she will continue to create amazing things!
Tuesday, April 4, 2017
Grandma loved seeing me perform in Suessical! Seeing a musical is a wonderful pastime. The musical Suessical did have a real story to follow, instead it had lots of singing and dancing based on Dr. Suess books. My advice: take a loved one with AD to see a musical. Pick one that has happy, cheerful songs, without a complicated story to follow. There was a four month U.S. study in 2013. Scientists played 50 minutes of show tunes for seniors with Alzheimer's disease. The musical tunes improved the mood, and there was an increase in mental performance! Another study in Finland showed that watching and singing songs from musicals can increase mental performance! My mom helped me find the studies! For more details about the study click here: https://www.ncbi.nlm.nih.gov/pubmed/24009169
- Bring your loved one to see a musical
- Pick a show that has a happy theme
- Pick a well-known show that your loved one may have already viewed
- Take your loved one to a local school which offers musicals
- Take your loved one to a community theatre show
- Get a song book or print up lyrics to show tunes
- Spend some time each day, singing a favorite song from a Broadway show
- Listen to a soundtrack from a broadway show, together.
- Some suggestions for Broadway shows: The Sound of Music, 42nd Street, Oklahoma, Gypsy, On The Town, Ragtime, Guys and Dolls, Showboat, Fiddler on the Roof, My Fair Lady, Cabaret, Man of La Mancha, South Pacific, Mary Poppins, The Music Man, Shenandoah, Damn Yankees! The Wizard of Oz
Wednesday, March 15, 2017
Hi Everyone! I am very honored to be featured in the UsAgainstAlzheimer's blog. Please check it out if you get a chance.