"Paladin" - Family Advocacy for Alzheimer's Disease
What I can't do, WE CAN DO!
How can I care for my loved one? What resources are available? How can I find what I need to help me care for my loved one? What next?
When individuals are faced with the diagnosis that a family member has any form of dementia they are overwhelmed with questions.
With Alzheimer's disease cases mushrooming in numbers, we felt an advocacy packet to distribute upon diagnosis is long overdue. Resources are available, however, not always readily accessible. Our goal is to help make resources more readily accessible to family members of all ages.
Our objective is to provide an information packet to help families cope with the challenges of Alzheimer's Disease and to help the diagnosed individual. This packet does both, helps the families and their loved one; the family members will get much needed support which will help them become better care-givers. The knowledge and insight shared in this packet helps by providing more skills to deal with the problems that arise and more understanding of how this illness impacts their loved one. These skills and understanding will go a long way toward easing the devastation of the journey for everyone involved.
As a group of authors we have each been impacted by the devastation of Alzheimer's Disease. We have come together with our respective books and unique experiences to offer support and resources that we could not find when we first started on our respective journeys. Our own experience has been there is a gap between books that are too clinical and sometimes depressing or written for medical professionals compared to hands-on, experiential, positive books that can connect lay people with professionals. It is our mission to fill that gap.
We are working together to provide information about organizations and resources to families coping with the challenges of a loved one's Alzheimer's Disease. One of our goals is to make this package available nationwide. Our "Paladin" packet will include our respective books, a list of resources in our booklet, " Dementia Resource List for Paladin - A Family Advocacy Packet" including information to access state specific Living Wills and or Advance Directive information to aid people when they are initially overwhelmed with this devastating diagnosis as well as support them on their journey through this disease. We will create a website which will be linked to our websites making available an electronic version of "Paladin" and links to other books and websites we believe are excellent resources. We will also have contact information available to get hard copy packages available for those who do not use the internet.
People suffering from Alzheimer's Disease are often helped by focusing on a comfortable life experience such as coloring, painting, creating, singing, and listening to music.Our packet will include an activity type book, such as a coloring book for people of all ages, as we have found pleasant distractions are necessary for family members of all ages.
It’s been our experience there are not enough resources for children over the age of 6 or for adult family members and caregivers. Our mission is to fill this gap as a package resource for families as well as a resource for memory care advocates to provide interactive tools for their clients and patient families.
Our "tag line" is a quote from a disabled Veteran who through the support of other Veterans learned, "What I can't do, WE can do"!
Budget: $29,000.00 Goal includes expenses as approximated. Non-profit status will be applied for upon successful fundraising campaign.
Approximate Expenses: Initial packet materials for number of packets (purchased from respective authors and participants at wholesale rates) to be determined by funds raised @ $50.00 per packet with the initial goal of 200 packets = $10,000.00; Design website: $5,000.00; Web Maintenance 2 Years - $4,000.00; Outreach/Marketing: Approximately 80 hours at $150.00 = $5,000.00; Miscellaneous Expenses, mailing materials, stationary supplies, communications, mileage, etc. - $5,000.00
Immediate/Short Term Goals: We hope to create as many packets as possible and get them in the hands of the families dealing with Alzheimer's Disease as soon as possible.
Long Range Goals: We have several long range goals including, but not limited to, continued fundraising which will allow us to provide our packet to families and individuals/caregivers at little or no expense long term. We will strive to continually update the packet as new research is done and new resources become available. And it is our intent to continue this project until a cure for Alzheimer's Disease is found.
Inspiration
Our collective inspiration has been how Alzheimer's disease and dementia has engulfed our lives and the lives of our extended families. Each of our experiences were unique but the one thing we all had in common was seeing a need to help all families be better informed, prepared and enlightened when this affliction enters the door. Alexandra's mom's entire family; siblings and father, were/are impacted by dementia so this is an issue that hits right in her home. But the inspiration to write her book, "Green Kitty" came one day when she was working in assisted living.
There was this wonderful feisty little lady who loved to tell about the time that she kissed Elvis Presley. She always ended the story by saying that he would still be alive if he had married her! But one day her 10 year old granddaughter came to visit and she was having a bad memory day. The poor old woman repeated herself several times and asked the same question more than once to her granddaughter. The young girl then rudely and loudly said "Grandma- you've already said that three times." The sweet grandmother's face just fell. Alexandra could see from across the room the woman's feelings had been hurt and remembers thinking to herself, "Someone ought to have told that young girl what was going on with her grandmother, what to expect and how to react to it."
That’s what made her decide to use her collection of amusing animal stories to write a book that would help children ages 8-12 have a better understanding of dementia.
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His Name Was Merle - Our Journey Through Alzheimer's Disease
"His Name Was Merle-" Our Journey through Alzheimer's Disease" by Lynda Jane Olander Converse. While everyone's journey is unique, there are common threads we experience and as we share our experiences and solutions we will be helpful to one another until there is a cure for this dread disease.This book is a loving tribute to our family and especially, my dad. It is also a resource as I hope you gain from our experiences and find the hope, courage and comfort in these pages to help you in some small way as you travel this path minute by minute, hour by hour and day by day.
How does it help people live well:
Alzheimer’s disease hits many families, leaving them clinging to memories and unsure of the future. "In His Name Was Merle - Our Journey through Alzheimer’s disease", I present, through our story, information you may be wondering about or have not considered. This includes:
• Care questions you will face early on: Can your loved one be cared for at home? How do you know when it is time to consider moving your loved one to a specialized facility?
• Issues faced by the primary caregiver.
• Emotional needs of the primary caregiver: What should your family consider when deciding on the best care options for your loved one?
• Emotions, including guilt or anxiety, over decisions related to the care and treatment of your loved one.
• Questions to consider when faced with tough end-of-life discussions.
• Coping methods and ideas.
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Staying Alive In A Sea of Forgetfulness
"Staying Alive in a Sea of Forgetfulness"- An especially important part of this advocacy project is to connect family members and caregivers in a way that makes a better life for the person with dementia. Gary Joseph LeBlanc's book, "Staying Afloat in a Sea of Forgetfulness" is an especially valuable resource on this subject and is also included in this package.
