Help! What Do I Do Now? Caring for Your Loved One with Alzheimer’s is now available in paperback from CreateSpace and will soon be available on Amazon.com. It is also available in a variety of ebook formats at Smashwords, and the Kindle edition will be online at Amazon.com within the next couple of days. Volume discounts are available, great to share with family members or members of Alzheimer’s support groups. E-mail info@lillieammann.net.

Updated: Help! What Do I Do Now?: Caring for Your Loved One with Alzheimer’s is now available at Amazon.com in both paperback and Kindle editions.

Of course, I am just a wee bit biased, as I am Nancy’s editor and publisher as well as her sister. However, we had several other people read the manuscript and give us feedback, and the consensus was that the book is very useful. It is short and easy-to-read—caregivers don’t have a lot of time to read, but it is filled with practical tips on subjects ranging from activities of daily living to laughter and enjoyable things to do.

Nancy was one of the caregivers for our father. The experience impacted her so much that she returned to college to earn a degree in social work. She began her career as a social worker in a nursing home with many dementia patients. Currently she is a social services consultant, and one of her primary duties is to training nursing home staff  on Alzheimer’s and other topics.

The guide  includes stories of a variety of situations and how caregivers successfully handled them. The stories are based on actual incidents, but some are composites of several different people and situations and others are changed enough to protect the privacy of the individuals involved.

I’ll be interviewing Nancy about the book soon, but in the meantime, here’s the Table of Contents to give you an idea of the topics covered:

• PREFACE             
• INTRODUCTION    
• WHAT IS ALZHEIMER’S? 
  •  Significance of Alzheimer’s         
  • Symptoms of Alzheimer’s           
  • Stages of Alzheimer’s Disease   
• HOW DO I DEAL WITH ALZHEIMER’S?     
  • Communication               
  • Behaviors           
  • Activities of Daily Living
  • Administering Medications         
  • Safety                  
  • When You Can No Longer Manage          
• HOW DO I MAKE THE BEST OF THIS?       
  • Choose Your Battles      
  • A Comfortable Environment and Gentle Cues   
  • Telling Others   
  • Enjoyable Things to Do 
  • Nurture Spirituality        
  • Laughter             
  • Taking care of yourself 
  • Remember Your Loved One Is Still in There Somewhere               
• RESOURCES

This little book would make a great Christmas gift for someone you know who is facing the challenges of caring for a loved one with Alzheimer’s!

Participating bloggers included Joanne Reynolds of Blueprint for Caregiving and Nora Nagatani of aboutalz.com.

The panelists agreed that Alzheimer’s Disease is already a major crisis and getting worse as the baby boomers age. However, the good news is that nearly 100 clinical trials are underway, and even the trials that have already failed have provided valuable information.  Pharmaceutical companies are partnering with academia, and Alzheimer’s is one of the top research priorities. The researchers were all optimistic that the research will eventually lead to effective treatments for this devastating disease.

A transcript of the roundtable will be posted on the PhRMA website soon.

Some of the researchers on the call appear in the video below.

Pharmaceutical Research and Manufacturers of America has recently published ”2010 Report: Medicines in Development for Alzheimer’s Disease.” Among the statistics included the report are these:

• Some 70 percent of people with Alzheimer’s and other dementias live at home, where they are cared for by family and friends.

• In 2009, nearly 11 million family members and friends provided an average of 21.9 hours of unpaid care per week for a person with Alzheimer’s disease or another dementia, for a total of about 12.5 billion hours of care. That year, the estimated economic value of the unpaid care was $144 billion.

I can tell you from personal experience that caregiving offers many challenges as well as blessings. My associate, Beverly Ellison, wrote in a recent post about becoming the caregiver for her mother and also shared do’s and don’ts for Alzheimer’s.

November is National Alzheimer’s Disease Awareness and National Caregivers Month. Caregivers give unselfishly of their time and energy and emotions to care for those they love who are being devastated by the progressive, fatal disease. Caregivers deserved to be honored all the time—especially during National Caregivers Month.

Call a caregiver to chat, drop by for a short visit, or take her to lunch. Volunteer to sit with the patient for a couple of hours so the caregiver can go shopping. If one of your family members is caring for a mutual relative with Alzheimer’s, offer to help and let the caregiver know how much you appreciate what she is doing. A  little appreciation goes a long way.

And before the end of the month, you can give a caregiver a special gift—Help! What Do I Do Now? Caring for Your Loved One with Alzheimer’s. Short, easy-to-read, and, above all, useful, this guide filled with practical tips caregivers can use every day was written by my sister Nancy Nicholson, a social worker with both personal and professional experience with Alzheimer’s. The Watch for more information next week. 

photo credit: Vince Alongi.

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It has taken me longer than I planned to get back with you to share my experience with the “Do’s and Don’ts” of caring for a loved one with Alzheimer’s Disease (AD). To those of you whom I have not responded to yet, please know that I will.

One of the things I’ve learned is that life—as unpredictable as it is under normal circumstances—becomes even more unpredictable when we become caregivers. I have learned to live one day at a time, to take time whenever I can and to adjust to what each day brings. I make my plans, keeping in mind that they could change at a moment’s notice if my Mom has a need that has to be met.

Because her short-term memory is gone, Mom can no longer “plan ahead.” So when she or an assisted living staff member tells me she needs something, she needs it NOW. I can be on my way home, to Bible Study, or to meet a friend for dinner when I get the notice. This means that I will either be late, miss Bible Study, or reschedule my dinner plans (depending on the situation) in order to meet Mom’s need(s). I try to stay ahead of the game, but it doesn’t always work out that way. I’ve learned accept it and to live with it because I know it’s going to happen.

On to the “Do’s and Don’ts.” Bear in mind that there is no scientific approach to my list. Everything I am sharing with you was learned—sometimes painfully—by trial and error.

I hope you find these “Do’s and Don’ts” helpful. Every experience with Alzheimer’s Disease is different because AD affects different people in different ways. So please feel free to share because we can all learn from each other. The more we learn, the more precious the “gift.”

God bless you!!  God bless America!!! 

Beverly Ellison <><

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Chances are many of you who are reading this have been impacted by Alzheimer’s Disease (AD). As our society continues to age, AD will continue to make itself known. My 91-year-old mother was diagnosed six years ago.

AD affects people in different ways. In my mother’s case, this mysterious disease has taken away her short-term memory, but that’s okay—that’s why I’m here. AD has changed our lives—my Mom’s, of course, as well as my husband’s (Carl) and mine.

I am primary caregiver for my Mom, yet when I was gifted (yes, gifted) with this responsibility, none of us was prepared. My Mom left her home one day for a short stay in the hospital as the result of a fall at her home (no broken bones!). When she was dismissed, she came home with Carl and me; she never returned home to live. Understandably, she resented it.

The first several months were challenging for all of us, but over time, with God’s help and the love and support of my husband (my Mom’s “son” as she calls him), things progressively got better. My mother lived with us for nearly three and a half years. She has resided in an assisted living facility for nearly three years now, and she enjoys it very much.

What an amazing transformation—for all of us—in the six years since Mom’s diagnosis! My Mom, like me, is by nature an introvert. As long as I’ve known her, she has been an introvert and was always very shy. As a direct result of AD, she exhibits the behavior of an extrovert, and is having the time of her life! She dances—I never knew she could! She sings—I never knew she could do that, either! She and I have so much fun together sitting and talking, running errands, watching a good movie together, and  going to church together, to name a few.

Taking care of my Mom and spending this cherished time with her has created a closeness we never knew before. We laugh and joke all the time. We’ve even made a game out of the loss of her short-term memory. When she asks the same question every few minutes, I respond in a way that makes her laugh and laugh and laugh. I love to hear her laugh! Why, I think that because of her and my naturally extroverted husband, I am becoming an extrovert, too!

So, you see, taking care of my Mom truly is a gift!

Next Tuesday, September 21, is World Alzheimer’s Day. Lillie will have a post on that day, then I’ll be back next Thursday  soon with some do’s and don’ts for dealing with people with AD. Stay tuned; I’ll tell you more in a few days!

Until then,

God bless you!! God bless America!!!

Beverly Ellison <><