It all started with a prayer. I had been worrying about what I would have to sacrifice in my busy schedule. What being a care partner to my mom was going to take.  I feared my church life, my YMCA life, and my home life would be rearranged, diminished, or removed in order to keep my mom safe, fed, and satisfied. The endless phone calls to solve the problem of the moment, to find the missing item, to review what had already been said were not enough. Making the 30-minute drive multiple times a week in addition to my vigorous schedule was wearing me out. Something was going to have to change. And I feared that it would be my schedule and me (in fact, I knew it would be my schedule and me). I just wasn’t willing to let it all go. Yet. To get my head and heart around those changes required some level of motivation, inspiration and commitment. Some move of God. Faith.

So I went forward in the Sunday service to the altar to pray, where prayer partners were waiting to join our petitions. I chose Melissa, a friend, a woman of faith to trust and hear my concerns. I whispered in her ear that I was conflicted about the growing needs of my mom, that in order to truly be helpful to her, I would have to back off my other activities that I held dear. I asked for divine guidance, a willing heart, and a path to follow. 

As Melissa lifted my struggle to the Lord, a peace began to settle over me. The conflict and chaos that I had been living began to ease and I had a vision that seemed to make everything all right.  In my mind’s eye, I saw myself sitting on the couch in my mother’s den. The dark paneled wall behind me was lit by light streaming in from the window over my left shoulder. All was quiet. I was calm. And I was writing.  

One of the things I was currently doing was writing – just little vignettes about people I knew, spiritual lessons from my dog, everyday life seen through the lens of faith – things like that. Seeing this vision gave me a fresh perspective on what might be a blessing – an alternate plan – perhaps God’s plan, instead of an inconvenience and a diversion from my life.  It began to dawn on me that sacrificing the plans I had and attending to the need right in front of me was the right thing to do. Tearfully, I told Melissa what I had seen in my vision. I felt like the decision was made. So I walked away from the altar feeling empowered to trim down my schedule and turn my heart toward my mom. Trusting that everything would work out. 

That was 2008. Today is June 21^, 2019.  The Longest Day. The day people are doing something to commemorate or honor a person with dementia. The day the book, Dementia-Friendly Worship – A Multifaith Handbook for Chaplains, Clergy, and Faith Communities goes on sale, on amazon.com. The day I am a published author.

Because I chose the path of caring for my mom, the desires of my heart are realized.  

The years we spent together after that day at the altar were full of trials, unbelievable challenges, sorrow, uncertainty, and grief. However, the further we went, the responsibility I felt for my mom began to turn into devotion and love. The stories I now have to cherish and share came from that fork in the road that led us down a path of hope, faith, and trust.  And have ended up in a book. Amazing. 

Jeremiah 29:11 (NIV)

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

There is a new book on the dementia reading shelf.  I came across this helpful information while perusing my audible library ap and have been listening ever since.  Gary Chapman, author of many versions of “The 5 Love Languages” has partnered with a caregiver (Dr.Edward Shaw) and a relational expert (Debbie Barr) to produce a multi perspective account on how to maintain the love connection with People With Dementia (PWD).

Based on my personal experience of taking care of my own mother and aunt, and befriending many others during our time in assisted living , memory care, and skilled care, I whole heartily agree with what is written in this sweet book. If you need some tips on how to connect or stay connected with PWD, this easy read if for you.

Find more information on “Keeping Love Alive as Memories Fade: The  5 Love Languages and the Alzheimer’s Journey” at  amazon.com

A Deeper Perspective on Alzheimer’s and other Dementias: Practical Tools with Spiritual Insights
By Megan Carnarius

A beautiful, thoughtful and practical book based on the 25 years plus experience of Megan Carnarius, RN a specialist caregiver of Alzheimer’s and dementia patients known for her warm human touch. Essential reading for all caregivers the book provides a unique insight into patient needs as well as numerous helpful suggestions for the carer as they experience the various stages of dementia diseases and the physical, emotional and spiritual demands. Carnarius is a noted memory care consultant whose expertise is regularly sought out in the designing and managing of care facilities and as a family consultant.

$18.99 Paperback
Order Now

Cheryl Carmichael has written a comprehensive guide for caregivers, entitled “Dare to Care: Caring for our Elders”. From her experiences while working with the Area Agency on Aging in Phoenix, with the Texas Department of Aging and Disability Services, with the Arizona Department of Health Services, and as caregiver of several family members, she has covered all areas of concern to help keep loved ones living in their own homes as they age.

Written in a conversational manner, her insight for day-to-day activities for memory care loss are relevant, including the essential life story format. She suggests the life story be limited to one page and kept handy so caregivers can be familiar with the person, providing dignity and respect. Her list of meaningful activities for advanced dementia is spot on.

A clever bed bathing guideline is provided along with easy to understand definitions of every caregiving term or actions required for good care. Meal planning ideas, home safety tips, and organizing medical records are covered for individuals who may only require supervisory care to persons who need hands on end of life care.

Finally, she lays out the importance of preparing in advance essential estate planning requirements to carry out long-term care. Funeral planning is also covered in detail.

This guidebook is a practical tool for new or experienced non-professional caregivers. Kept handy for reference while wading through the unfamiliar details of care can provide clarity and instruction for necessary preparations still needed. “Dare to Care” is a good resource for caregiving support or a thoughtful gift for anyone brave enough to dare to care.

This book can be ordered in bulk from Cheryl@DaretoCareElders.com , online at amazon.com , or at your local bookstore. Also available as an e-book on Kindle.

Teepa Snow knows how to make a lasting impression.  Her trademark characterizations of dementia keeps her audience engaged and amused.  But dementia is no laughing matter.  Anyone who cares for people with Alzheimer’s disease or other dementia is faced with incomprehensible challenges.  Teepa Snow is on a mission to change the perception of dementia in society and instruct caregivers on positive approach practices.  Her recent visit to Mobile as the featured speaker at the “Lower Alabama 2014 Alzheimer’s and Dementia Conference” was a treat for all in attendance.  “That’s my mother,” was  tearfully said by one participant as Teepa role played out a typical scenario between a mother affected by dementia and her daughter.  Mrs. Snow’s 30 plus years working hands on with dementia patients has made behaviors caused by dementia to be second nature.  She recently published “Dementia Caregiver Guide,”  a family friendly guidebook to understanding the many facets and progression of dementia.  It can be purchased from her website, teepasnow.com.

In her presentation, Mrs. Snow demonstrated techniques for assisting someone with dementia into a car, how to help someone sit down in a chair safely, and how to substitute a dangerous situation with a safe one.  She stressed that understanding the limitations someone may be experiencing is helpful when providing care: realizing that vision is limited,  awareness that while hearing may not be impaired, understanding  meanings of words may be, and that the use of hands and feet are altered. “All due to changes in the brain”, said Teepa Snow, referring to images from the projector that clearly show vacant spots where tissue once was.

The attentive audience got to rehearse techniques with partners to help apply her practical teachings.

Teepa Snow’s keen awareness of people’s behavior makes her an excellent teacher.  Thank you, Teepa Snow, for coming to Mobile and moving us forward in our approach to care.  Thank you Gulf Coast Dementia Services and Mercy Life,  for this invaluable lesson made available to our community today. May all that was learned go forth and multiply throughout our care community.

Since I have become a caregiver, I enjoy reading anything to do with Alzheimer’s Disease especially personal stories from people who have walked the journey alongside their loved one. The theme of my last three books addresses the approach taken when dealing with a person with dementia and how to engage them in meaningful activities to maintain qualify of life and make life manageable for the caregiver.

Virginia Bell and David Troxel are in their fourth printing of “The Best Friends Approach to Alzheimer’s Care”.   The Best Friends Approach is designed to create empathy from the carer point of view in order to understand how best to communicate with their loved one living with dementia.  They  have coined the term “knack” to refer in caregiving as a clever trick or stratagem or the ability and skill to do something easily.  Some individuals are simply born with knack; their personality and sensibility help them to be wonderful caregivers.  The Best Friends model can teach the abilities and skills of knack and along the way offer many clever tricks in the “dos and don’ts of Alzheimer’s care.  This is a worthwhile book and is only one of several written by these authors.

Hot off the press is Tom and Karen Brenner’s new book,” You Say Goodbye and We Say Hello: the Montessori Method for Positive Dementia Care”.   Incorporating songs from the Beatles as each chapter title, this easy read has a  clever appeal to the targeted baby boomers providing care.  Granted that dementia care is  an overwhelming task, they have broken down their personal experiences as a gerontologist and a Montessori teacher to  share their findings labeled “Guideposts” throughout their story.  They weave innovative and doable activities throughout the book and leave both professional and family caregivers with a renewed hope for creating a positive environment to deepen the connection with the people they love and care for.

Finally, having to wait longer than expected to receive this book in the mail, “Contented Dementia” traveled across the pond from England to find its way to me. Author  Oliver James lives in Oxfordshire and is trained as a clinical child psychologist and is a trustee of the Alzheimer’s charity, SPECAL.  An open letter from the inventor of the prescribed method in this book tells the reader if they have dementia and are reading the letter, not to worry about the future, appoint a person they trust as their advocate and have them read the book, then forget all about the diagnosis and get on with enjoying their life.  The rest of the book goes into great detail on how to use the person’s history to help create a life living in the present with memories from the past.  Penelope Garner developed the SPECAL Technique after caring for her own mother followed by years of observation and research with other clients. Get ready to do your homework as you read so that you will develop a customized world where your caree lives contently. For more information, go to Contented Dementia Trust.

All three of these books are similar.   Each stresses the importance of knowing the history, preferences and interests of someone with dementia and not to argue with but learn how to navigate away from unwanted negative behaviors associated with dementia.  Once these methods are perfected, consistency with all carers involved is required for optimum outcome.  All are worth reading.  We have a long way to go to get everyone on the same page with caregiving techniques.  May it begin with us – the ones who care the most.

Check out “The Other Talk,” which was written to help children of aging parents face all the decisions that they will make in an organized and complete manner.

This free book can help children talk with their aging parents about future plans for their care.

agingredefined.org

This book provides spiritual inspiration while providing care for someone with Alzheimer’s Disease.  A thoughtful, daily guide.  Go to Godmomandme.com for more information and access to Linda Born’s blog and website.

“Learning to Speak Alzheimer’s” by Joanne Koenig Coste

“Dancing with Rose” by Laura Kessler

“My Mom has Alzheimer’s”  by Linda A. Born

“The Best Friends Approach to Alzheimer’s Care” by Virginia Bell & David Troxel

“You Say Goodbye and We Say Hello, The Montessori Method for Positive Dementia Care” by Tom and Karen Brenner

“Contented Dementia” by Oliver James

“Still Alice” by Lisa Genova

“A Pocket Guide for the Alzheimer’s Caregiver” by Daniel C. Potts, M.D. and Ellen Woodward Potts

“Dementia Caregiver Guide” by Teepa Snow, MS, OTR/L, FAOTA

“I Remember Better When I Paint” by Berna G. Huebner, Editor