Resource Documents


 

Books
 The Complete Eldercare Planner - Where to start, which questions to ask and how to find help, by Joy Loverde 

  • Effective Planning 
  • Creating a Care Team 
  • Be Kind to Yourself 
  • Communicating 
  • Emergency Preparedness 
  • Money Matters 
  • Legal Matters 
  • Insurance 
  • Housing 
  • Safe and Secure 
  • Transportation and Mobility 
  • Managing Medical Care 
  • Quality of Life 
  • Death and Dying 
  • Access Now 
  • Checklists and Worksheets 

The Fragile Years- Proven Strategies for the Care of Aging Loved Ones, by Amy Cameron O’Rourke, Book and YouTube Series - WEBSITE 

  • A Crisis for the Aging Like No Other 
  • Recognizing Your Loved One’s Entry Into the Fragile Years 
  • Finding a Caring Place for Your Parent’s Fragile Years 
  • The Home Care Option 
  • Caring for the Memory Impaired and Others with Special Challenges 
  • Pharmageddon: Prescriptions for Disaster 
  • Stopping Repeated Hospitalizations and Over treatment 
  • Finding Your Way Through the Maze of Health care Insurance and VA Benefits 
  •  Providing End of Life Care with Compassion and Grace 



Let’s Talk about Aging Parents - A real Life Guide to Solving Problems with 27 Essential Conversations, by Laura Tamblyn Watts 

  • Part 1 - The house, home care, and moving out 
  • Part 2 - Mental capacity, power of attorney, and safety 
  • Part 3 - Love, loss, and hopefully some laughs 
  • Part 4 - Health, hearing issues, and horrible driving 

 

When your Aging Parent Needs Help - A geritrician’s step-by-step guide to memory loss, resistance, safety worries, and more. by Leslie Kernisan and Paula Spencer Scott 

  • Taking Stock 
    • Chapter 1 -Get the Facts on the Situation 
    • Chapter 2 - Get Your Parent’s Take 
      • Taking Aim 
        • Chapter 3 - Learn the Ideal Approach 
        • Chapter 4 - Realize Why the Ideal Is Usually Hard 
        • Taking Action 
          • Chapter 5 - Plan your Next Steps, And Try Them 
          • Chapter 6 - Use These Workarounds for Common Obstacles 
        • Take the Long View 
          • Chapter 7 - Try This When You Feel Really Stuck 
          • Chapter 8 - Equip Yourself for the lArger Journey of Helping Your Aging Parent 
        • Resources 
          • Downloadable Cheatsheets 

Working Daughter: A Guide to Caring for Your Aging Parents While Making a Living, by Liz O'Donnell (Author) 

I’m Still Here, John Zeisel, Ph.D. 

Forget Me Not, Debra Kostiw 

Where The Light Gets In,  Kimberly Williams-Paisley 

Nana Nana , Nate Bertone (children’s book) 

The Invisible Patient, Annalee Kruger 

 

Alzheimer's Books

The following books are only a few of many that discuss Alzheimer's disease and its effect on individuals, families, and society.

 

A Better Way of Dying written by a physician Dr. Jeanne Fitzpatrick and a lawyer Dr. Eileen Fitzpatrick and published by Penguin Books in 2010 provides a framework for the difficult ethical and legal problems encountered in end-of-life care. It contains useful information about how to put in writing end-of-life wishes and defines terms that are often used interchangeably but have different ethical and legal meanings.

 

Alzheimer's in America: The Shriver Report on Women and Alzheimer's is a compilation of essays and reports edited by Maria Shriver and the Alzheimer's Association published by Simon and Shuster in 2011. It discusses the latest Alzheimer research on prevention and cure, and most importantly examines the effect of caregiving on society and in particular women who are the primary caregivers for all older adults who need help in living independently.

 

Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia was written by Nancy Pearce a licensed medical social worker who specializes in working with persons with dementia. It was published in 2007 by Forrason Press in Taylors, SC. It contains Ms. Pearce's personal experiences over the course of her practice career and her teaching.

 

Passages in Caregiving by Gail Sheehy was published in 2010 by William Morrow and describes her caregiving journey during the time her husband was treated for terminal cancer. Like Kubler-Ross' stages of grief, Sheehy sketches out the passage from disbelief and shock to acceptance. It is a personal account of the toll of caregiving for those we love who cannot care for themselves as life ends. There is also a chapter on dementia. The appendix to this book contains many helpful resources for use by caregivers.

 

Still Alice (2008) by Lisa Genova, published by Pocket Books, is the story of Alice Howard, a Harvard psychology professor, who first shows signs of Alzheimer's disease when she loses her Blackberry, gets lost on familiar routes, and forgets appointments. The story is told from Alice's point of view. This book is also available as a sound recording (CD).

 

The Forgetting: A Portrait of Alzheimer's was written by David Strenk in 2001 and published by Anchor Books. It was made into a documentary by Public Broadcasting Company. Both the book and the television documentary discuss the disease's causes, course, and treatment and its effect on people, and their families. 

 

The 36 Hour Day: A family Guide to Caring for People with Alzheimer's disease, other Dementias, and Memory Loss in Later Life (2006) is the fourth edition of a book written by Nancy L. Mace and Peter V. Rabins published by Johns Hopkins University Press. It is considered an excellent source for information about family caregiving.

 

The Troubled Man (2011) was written by Henning Mankel and tells the story of Kurt Wallender, a talented policeman, whose last case is marred by Kurt's inexplicable lapses of memory. As he struggles with solving a complicated and intellectually challenging crime, he begins to understand that something is not right with the way his brain is functioning.

 

Videos

Amy Cameron Rourke - Author of the Fragile Years: Amy O’Rourke has worked in the field of aging since high school. She volunteered in nursing homes in high school, and upon college graduation worked for seven years as an activities director in nursing homes and continuing care retirement communities. After graduate school, she became an administrator of health services and a licensed nursing home administrator in a continuing care retirement community for nine years. She owned and operated The Cameron Group, a full-service care management company, for twenty years and is currently working as director of care management for Arosa and owner of O’Rourke and Associates, a public benefits specialist company. She is a recipient of the Entrepreneur of the Year award, a TEDx speaker, and the former president of the Aging Life Care Association. A powerful speaker who’s YouTube channel helps caregivers help to become partners with parents and loved ones during the aging process.  - Link to YouTube Channel 

Pamela D Wilson Website: Pamela Wilson is a caregiving expert, advocate, and speaker who offers subject matter expertise and support to family caregivers, professionals, and organizations. Since 1999, Pamela has provided direct service to families, individuals, caregivers, clinical and social care providers, insurance professionals, elder law and estate planning attorneys, and financial and wealth planners.  Her subject matter expertise is in critical and post-acute care, long-term care, care management, care navigation, caregiver support, elder care, legal and financial appointments, and estate administration. 

Pamela Wilson’s Caregiver’s Library offers a Youtube channel with videos on a variety of relevant topics, that provides solutions not advertisements on products.  LINK 

  • Online course for Caregivers - LINK  
  • The Caring Generation® Caregiver Podcast:  Episodes feature a wide range of caregiving, health, financial, and legal topics relevant to care associated with aging and health.  LINK 

Alzheimer's Videos

A search of the Internet will reveal the many numbers of films and documentaries on Alzheimer's disease that have been made over the last several decades. The following is a sample of documentaries available on PBS, HBO, and other TV channels, and a few of the commercial films, which reveal the struggles of people and caregivers as Alzheimer's disease takes over their lives.

 

Alive Inside (2014) is a documentary that explores the healing power of music. It follows numerous visionaries in healthcare including social worker Dan Cohen, founder of the nonprofit organization Music & Memory, as he fights against a broken healthcare system to demonstrate music’s ability to combat memory loss and restore a deep sense of self.

 

Alzheimer's Disease: Facing the Facts (2009) is a documentary about Alzheimer's disease including current research and the problems in funding.

 

Alzheimer's: Every Moment Counts (2017) is a PBS documentary meant to be urgent wake-up call about the national threat posed by Alzheimer’s disease, one of the most critical public health crises facing America. The film illuminates the social and economic consequences for the country unless a medical breakthrough is discovered.

 

Away from Her (2006) directed by Sarah Pollay is a film about a woman who turns away from her husband and marriage as her symptoms of Alzheimer's disease worsen and she enters a long-term care facility. Available on DVD.

 

Can Alzheimer's be Stopped? (2016). A Nova production that aired on April 13, 2016 on PBS that discusses the biology and chemistry of the disease and the latest research findings.

 

Iris (1990) directed by Richard Eyre follows the true events of Iris Murdock, an intellectual, philosopher, and novelist who loses all sense of herself as she moves through the stages of Alzheimer's disease. The portrait of a marriage under stress is handled well. Available on DVD.

 

Iron Lady (2012) stars Meryl Streep in a portrait of Prime Minister Margaret Thatcher's struggle with dementia in the years after resigning from Parliament in 1990. Available on Blue Ray and DVD.

 

Poetry (2010) directed by Chang-dong Lee is the story of a South Korean grandmother who is diagnosed with Alzheimer's disease, but because of life's circumstances must find her way toward solving the problems of a wayward grandson and an indifferent daughter by herself. She does it through poetry, compassion, and determination to live life fully despite her encroaching symptoms. Available on DVD.

 

Still Alice (2014) is a movie based on the novel Still Alice. It is available in DVD for rent or from Netflix and streaming.

 

The Alzheimer's Project (2009). Produced by HBO is based on the work done by Maria Shriver and the Alzheimer's Association containing a number of essays by people directly affected by the disease and experts in the treatment and study of this disease. The project includes four documentaries and 15 short films.

 

The Forgetting: A Portrait of Alzheimer's (2004) is described under books and can be seen on the PBS Website and is available in a DVD.

 

Websites/Articles

 

  • Daughterhood - Very few people plan for the all-encompassing role of family caregiver. When it hits, the impact affects everyone. Daughterhood strives to help family caregivers feel supported and not alone. With almost a decade of personal interactions with family caregivers, we understand every step of caregiving and all of the emotions that come with it. Daughterhood sees firsthand the struggles of finding affordable and reliable resources and offers free, virtual, and easily accessible “circles” where caregivers can take a ‘deep dive’ into specific areas, including dementia, care transitions, navigating resources and aspects of care to share and learn from each other in a more flexible format about all aspects of caregiving. . - Link 

 

  • Pamela D Wilson & The Caregiving Generation: The Caring Generation represents Pamela’s mission of reaching one million caregivers worldwide to provide help, support, and online education. - Website and Youtube Series on Caretaking and Aging Loved Ones Issues, Resources and Advice - Link 

 

  • SoloAllies.com - SoloAllies.com is a website that provides a directory of professionals who help seniors plan for aging alone. Learn more about the range of national services available and the range of topics from housing to healthcare to legal and financial supports. Leanr more

 

  • THE TELLEGACY PROGRAM: Discover the potential of a conversation. Research has shown that loneliness and social isolation can result in long-term negative health outcomes. The intergenerational Tellegacy program helps keep older adults connected. https://tellegacy.org/ 

 

  • The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Website includes local resources and helpful advice on many topics. https://www.alz.org/ 

 

  • Founded in 1961, The American Parkinson Disease Association (APDA) is a nationwide grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder.  https://www.apdaparkinson.org/ 

 

 

 

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