Jean Lees parents were both diagnosed with Alzheimer’s on the same day. She was the hometown daughter, working full time. Her sister lived 1,000 miles away. What could have been a recipe for disaster became AlzAuthors.

Jeans sister suggested keeping a journal as part of caring for their parents . The result of this journal keeping was not to eventually write a book. Quite the contrary. The journal clearly described the health issues of their parents.

But keeping the journal, written words describing “private health information” made Jean feel profoundly guilty. In her own words, “Like a traitorous spy, I kept the journal for two years. It became an integral part of our parents’ diagnosis.”

Additionally, reading guided Jean through her Alzheimer’s caregiving journey. Each book, each voice, equally strengthened her for difficult times ahead. Uniquely, no story was exactly the same. Jean makes your caregiving journey easier by telling her story and adding her voice to the choir, .

How does someone go from documenting health issues to founding the largest collection of books on Alzheimer's?  As most things, it happened in stages. As a consequence of being told by an agent that her book was loved but that Jean had no name recognition, she decided to self publish.

For example, Marianne Scuicco (a past guest) got started with Blue Hydrangeas through self publishing . Consequently, after her own publishing and receiving many positive reviews, Jean reached out to Marianne.  Jean felt she was reaching out to greatness and was shocked when she heard back.
About AlzAuthors
Connecting over a shared understanding of being Alzheimer's caregivers is how AlzAuthors was born. Equally important to their connection was finding more like-minded authors with the same goal. Together with a shared goal in mind they reached out to more authors.

Making a difference in your dementia journey is the goal of AlzAuthors. Equally important the site is managed by six daughters who have experienced the loss of a loved one with dementia. Lifting the silence and stigma of Alzheimer's and other dementias is their goal.

AlzAuthors write the words that serve as caregiver handbooks. In addition, they are guides through the disease process, or a catalyst for much needed conversation. A new author is featured each week and receive requests for inclusion from writers globally. Currently, they are 200 authors strong and growing.
The AlzAuthors Blog
Featuring a new author every week, the AlzAuthors blog is a fantastic resource to learning about other caregiver journeys. Together with authors and bloggers this site offers the widest range of advice in one place.

Regardless of what you're looking for, you're sure to find it on AlzAuthors site. Looking for books focused on advice? The memoir and non fiction titles available are sure to provide the advice you seek. Furthermore, if you're looking for something different, there are many fiction titles available. Equally important are books for kids and teens. Young people have different questions about Alzheimer's and AlzAuthors has many books that address their concerns.

As if books & blogs were not enough, there are opportunities to meet many the authors. By checking out their calendar of events you may find an opportunity for an in person meeting.
Where Else To Find Fading Memories
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Staggering numbers of hospital readmissions are due to medication management errors made by the patient or caregiver.  Taking the right pill, at the right time, in the right amount sounds simple, right? Not so much.

Speaking with Kimber Westmore introduced me Pill Map. Pill Map is a medication management solution. What it's not is a pill box. Pill Map takes the worry and confusion of managing your loved ones medications.

For example, when my Dad was released from the hospital my sister and I had to manage his medications for the paid caregivers. There was a long list of medications to discontinue, change as well as add. Many of his pills were white ovals in varying yet similar sizes. Worrying that we were not medicating him properly was overwhelming!

Ours was a common concern.  As a result, we looked up pills on the internet, a common way to manage new meds. Even that solution didn't give us the peace of mind we were medicating him correctly.

Similarly, many families find themselves in this situation. Even spouses may not be unaware of their loved ones medications specifications. Consequently, if there is an emergency correctly informing the medical staff what is prescribed is a challenge.

As a result, there could be a delay in treatment until it's clear what the patient is taking. This situation is definitely not ideal. However, Pill Map is an ideal solution to these situations.

After listening to Kimber's story, check out their website. End the medication management nightmare by getting your own Pill Map. Caregiving is a tough journey. However, finding a solution to one of the biggest challenges is very rewarding.

Pill Map website

The Importance of Health Care Advocates
Where Else To Find Fading Memories
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Participating in a Connected Horse workshop provides unique opportunities for people living with early-stage dementia and their care partners. It's time to be together and experience non-riding activities with horses. By experiencing the power of the human-horse connection participants feel relaxed, confident, and happy. Learning self-compassion, stress reduction strategies, communication and awareness practices is the goal.

Connected Horse was founded in 2015 by Nancy Schier Anzelmo and Paula Hertel. Both horse lovers and are professionals in senior and dementia care in addition to gerontology. Their nonprofit is committed to the belief that horses can provide humans with valuable insights into the healing process.

As a result, workshop attendees find a reconnection with the spouse they used to know, reawakened childhood memories or simply, exactly what the doctor ordered. Having a purpose is crucial for all people. But, providing that sense of purpose gets more difficult as our loved one progresses with their disease.

It's also important to give both people a chance to reconnect. This program has utilized a lot of research to allow them to give the participants the best possible outcomes. For example, they've measured stress reduction and life indicators for those living with the disease. This research is ongoing with Stanford and UC Davis.

Speaking with Paula and Nancy was very eye-opening. I'd dare say almost inspiring. Watching the person I knew as my Mother disappear, unable to do even simplified activities is devastating. It's too late for us to reconnect, she's far from the early stages of her disease. However, I can see how she would have enjoyed a program like this. Getting her there may have been the biggest challenge, however.
Reducing Stigmas & Gaining Support
Most importantly is reducing the stigma attached to this disease. We've done it with others like cancer and Aids, now we need to do it for Alzheimer's. As a result of reducing stigmas. more people will seek out programs that help them.

Above all, learning about the support and programs available will go a long way in helping.  Having Alzheimer's is bad enough, consequently, we need to learn all we can.

Connected Horse website

Unconditional Love – Therapy Dogs in Action!
Where Else To Find Fading Memories
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Offering something everyone on the Alzheimer's path needs, knowledge, is one of the benefits of adding an Alzheimer's cruise to your vacation list.  This one-of-a-kind cruise is a unique experience for people in the early stages of Alzheimer's and their care partners. Cruising together you'll gain valuable knowledge, important friendships, and happy memories.

In this podcast episode, I talk to Lisa Marie Chirco, the woman behind this cruise. With an extensive background in event planning as well as a history of caregiving.  Lisa put together a must take a cruise. For example, people newly diagnosed with Alzheimers have lots of questions. In addition, their care partner has questions and concerns unique to themselves.

On the inaugural cruise, attendees had daily opportunities to learn.  Many of the topics covered will make their journey together as easy as possible. During morning sessions on board, the topics covered included financial planning, safety, caregiving techniques and more.

Learning in a small group environment fosters a sense of camaraderie where friendships can blossom. As a result, you leave the cruise with the knowledge that you can handle what's coming. In addition, you'll have a group of people on the same journey to lean on when needed.

Give this episode a listen. I'm certain when you're done, you'll be adding this cruise to your must-do list.

Book Your Cruise Today

Hear from an Inaugural Attendee
Where Else To Find Fading Memories
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These days there’s a lot more knowledge about Alzheimer's and I am truly grateful for that. I’m grateful to be part of the knowledge space. By learning more we are better able to handle challenging situations and keep our stress as low as possible. This episode is about how I use knowledge as a coping technique.

When I started my podcast I wanted to share what I had already learned. Fearing that that knowledge wouldn’t provide too many episodes I started staking out other people and their knowledge. Needing to know more myself was another reason.

Producing this podcast gives me the knowledge and a wide network of people. I can reach out to this network when I need them.  Reaching out to other caregivers is also an excellent way to manage some of our self-care.

But back to knowledge as a coping technique. Let me tell you a story. Many of you know my Mom does not remember that my Dad died.  Frequently, she asks me if “her husband” knows where she's going. She used to ask me every 2 minutes. Frustrating doesn't begin to explain how I felt. One day I had an “ah-ha” moment. I realized that by answering her with “yes, Dad knows…” it didn't really answer her concern. Lacking the understanding of our relationship made my answer non-sensical.

Having this “a-ha” moment was only possible because of what I've learned. That is the reason I have sought out a guest who can help us all with specific challenges.

Let me tell you about what I got from the Savvy Caregiver training.
Savvy Caregivers
First, if you think the savvy caregiver program is going to teach you how to make your loved one be better, remember more I can tell you that’s not the case at all.  This program trains us, the caregiver.  Alzheimer’s & dementia affect each person differently so each of us has our own unique struggles.  Despite the differences, however, each of us has to learn how WE have to change, to make this journey with our loved one more bearable.

Guiding the behavior of our loved ones will take up a considerable part of our day. The term behavior only means action in this context, not good or bad behavior.  Learning how to make this happen isn't hard. Ask yourself these questions;

What has your loved one always liked to do?
In everyday life, what have they done to get through the day?
What do you like to do and share with this person?

Make your list and keep revising it as you go.  Some tips to consider as they progress with the disease.

What parts of an activity to try with the person
How much and what kind of control to exert?
Do we need to provide help & if so, how much?
What to watch out for that tells you when to back off or try something else.

Simplifying Projects
Six months after Mom moved into the memory residence I wanted to help her create Christmas gifts for the grandkids. Working on the advice to simplify activities they've always enjoyed. I selected a project that I thought she'd enjoy. Having to continually remind her of what we were doing should have been my first clue. Mom constantly worried about doing it wrong.

What I thought was poor memory as the cause wasn't the case. Because Mom's visual-spatial processing is poor, I didn't realize that she didn't comprehend what she was doing. What could have been an enjoyable afternoon turned into a frustrating one? At this point all I do with Mom is people watch.
Other Challenging Behaviors
Walking or Pacing
Walking and pacing are common and frustrating behaviors. Many people with dementia walk a lot. It is important to distinguish between good walking from disturbed walking. Pacing can provide a way to wear off excess energy.  Some folks who walk or pace a lot seem to be searching for something.  There is often a troubling quality in the way they move. Do they look concerned, lost, or troubled?

Look for a pattern in their walking. Is there a repetitive quality that might allow yo…

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The Savvy Caregiver Program is a training program for caregivers like you. Caregiving is a role far different from being a spouse or child.  Those terms describe relationships. Assisting and guiding someone who is living with a chronic illness is the definition of caregiving. It is work.

The caregiving role has a “job description”. Putting together the tasks, the helping, the cleaning up, watching, worrying, everything make up the caregivers job description. Hiring someone to do what you do isn't truly possible. With enough money you can hire people to do many of your caregiving tasks. However, the caregiver role is more than one person can handle.

Caregiving is a job most of us never expected to have and are untrained to do properly. Lacking proper training leads to stress, frustration and sometimes injuries. Taking care of a person living with a demanding illness like Alzheimer's is specialized work. Doing this work successfully requires special skills and knowledge,  You also need an outlet and attitude that helps you look after yourself.
Why Do I Need Caregiver Training?
Being unprepared for the role of caregiver is common. Lacking awareness of available training or even the need for training is also common. Many family caregivers tackle their role as a caregiver in a way similar to raising children. Unfortunately, this method leads to a lot of stress, frustration and tears. Consider the situation you've found yourself in. Caregiving is likely very different from any other role you have experienced. Seeing, recognizing and understanding that difference are important first steps in appreciating the work you have undertaken as a caregiver.

Most importantly, the Savvy Caregiver Program teaches you how to be a great caregiver. I attended the accelerated version (3 weeks vs 6) this past May. Learning how to be a better care partner to my Mom was a blessing. Taking this training earlier on the disease would have been a huge benefit to my Dad. Between his chronic illnesses and caring for Mom, he had too much on his plate.
What Types of Things Will I Learn In This Training?
Firstly, you'll learn about providing contented involvement.  In other words, successful caregiving comes down to helping the person be as comfortable & involved & happy as possible. Keeping in mind that a person living with a demanding disorder can still:

zero in on a task or activity
stay with it for some time
have a pleasant time doing it

Keeping the person involved and content may help lessen confusion and reduce the chances of distress and difficult behaviors. Determining contented involvement takes practice. For instance, think of Goldilocks trying to find a balance between too much and too little. That is to say, a just right amount.

As a result of taking the training program I learned new ways to approach caring for Mom as she declines further.  Learning that we, as caregivers, are more in charge than we thought was huge.  While we can't control the disease, we can control our reactions. For example. reacting in calm, more understanding ways helps our loved one stay calm. Anyone dealing with someone with Alzheimer's knows that being calm can be a challenge.

Changing our behavior, reactions will change the outcomes of many of our interactions. That's the benefit of becoming a Savvy Caregiver. As a result, our journey as caregivers can be a lot easier.

This is the painting that was discussed in this episode.

 

Learn More About Training Opportunities

Coping & Surviving as an Alzheimer’s Caregiver
Where Else To Find Fading Memories
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Sometimes the simple act of breathing, deep breath in and out can mentally give a caregiver space to solve a problem.  Understanding the roller coaster of emotions caregivers go through is our guest, Cyndi. Living with and taking care of her Mom and brother was overwhelming. Cyndi was a stressed-out family caregiver not taking care of herself. (Sound familiar?)
Self-care is a vital component in the overall caregiving journey. I am very reluctant to miss my regular exercise classes or bike rides because I know how I feel when I do. It is not a selfish thing to take time for yourself. Being a good care partner means assembling your support network so self-care isn't neglected.

In addition to exercise I'm in a caregiver support group, I participate in many online chat groups and I talk to many knowledgeable guests. Despite all this, I still struggle. Struggling is part of the journey, unfortunately. However, we don't have to struggle alone. In fact, we should do our best not too.

Gathering your support network is just as important as making sure your loved one has what they need. In fact, it may even be more important. Failing to be able to care for someone because you neglected your own needs is something all caregivers need to avoid.

Tuning in to this episode will give you insights into self-care, challenges in getting help and ways to make it happen.

Alzheimer's Association Support Group Locator

Senior Social Program with Kids Episode
Where Else To Find Fading Memories
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Choosing to embark on an Alzheimer's journey is not one most of us take.  Generally, Alzheimer's chooses us and generally later in life. That is not the case for today's guest, Zach Smith. Zach volunteered at our local Alzheimer's Associations chapter as a way to fulfill a graduation requirement.  At the time his grandmother was already living with Alzheimer's. Therefore, it was a natural place for him to want to volunteer.

During his volunteer time, Zach met his future supervisor. She was in charge of Public Policy for Northern California/Northern Nevada.  Volunteering was not glamorous but it was eye-opening. Alzheimer's is the sixth leading cause of death for seniors in American but got the least amount of research funding. Feeling angry at this financial imbalance  Zach decided to become more involved.
A career In Alzheimer's Policy Advocacy
Congress had passed the National Alzheimer's Project Act which introduced a Secretary position into the office of the National Institute of Health. (The National Alzheimer's Act was introduced in February 2010 & became law in January 2011.)  While volunteering, Zach attended the State Advocacy Day, National Advocacy Forum, and worked with the legislative ambassador volunteers. Consequently, he decided to make a career in policy advocacy for Alzheimer's. Changing the course of the disease for everyone affected in the future was Zach's vision.

Studying health care public policy in college combined with advocacy work made his career vision a reality. While completing his studies Zach was lobbying and participating in the legislative process. Seven months after graduation he started working in the Alzheimer's Associations program department. A year later he was promoted to the public policy department where he's been for  2.5 years.  Zach says it's his pleasure to come to work every day, work with advocate volunteers, and teach them what he did as a volunteer.

Zach teaches that sharing our stories with our elected officials, both state and federal is an important step. This step helps them understand the need for legislation and increased funding. With increases in funding, we will be *that* much closer to a cure.

During the course of this podcast, I've talked to many people whose lives were changed by Alzheimer's. Zach is in a unique category as the youngest person I've spoken to. He has a passion for changing the future of Alzheimer's care. Zach's grandmother would be immensely proud of what he's doing and what he'll achieve.
Changing the Face of Alzheimer's Work
A fascinating side note is an increase in Millennials who are caregivers. Over 10 million Millennials care for someone with Alzheimer's. Sadly, no Google search tells me how many millennials go into policy advocacy but I'm sure it's not high.

Meeting Zach's grandmother would have been something I would have enjoyed. Hearing about her reminds me of my grandmother who also had memory loss at the end of her life. Regular listeners know, we're not sure if it was due an aneurysm or dementia.  Assuming Alzheimer's is my thought because her mother also had dementia at the end of her life.

If you're interested in becoming a state advocate (you don't have to do politics) you can contact Zach at zsmith@alz.org  Working with Zach will be a joy, I promise!

A $10 Million Dollar Ask for Alzheimer's

More info on The National Alzheimer's Project Act
Where Else To Find Fading Memories
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When care providers learn to forgive old hurts they learn to smooth away some of the unnecessary (yet understandable) emotional challenges in their lives. This podcast episode talks about how to do just that in a fun & conversational manner.

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Carlen's story is about a path that emerged in the darkest of hours. In other words, a path that was neither planned nor foreseen. It’s a story about the inner struggles and insights that emerged when he leads Martha and their children through a life-altering quandary.

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