New Help for Alzheimer’s Caregivers

I mentioned in my post on National Caregivers Month and my post on World Alzheimer’s Day that my sister Nancy Nicholson, LBSW, was working on a guide for Alzheimer’s caregivers.

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!

The Future of Alzheimer’s: Hope in the Long-Term

This week, I participated in an Alzheimer’s roundtable conference call sponsored by the Pharmaceutical Research and Manufacturers of America (PhRMA). The call was moderated by Ed Belkin, Vice President of Communications and Public Affairs, PhRMA, and speakers included David Wheadon, M.D., Senior Vice President for Scientific and Regulatory Affairs, PhRMA; David Michelson, M.D., Vice President, Clinical Neuroscience Research, Merck Research Laboratories; Phil Iredale, Head of Neurodegeneration Biology, Pfizer; Richard Mohs, Global Product Development, Eli Lilly and Company; and Trish Vandenberg, USAgainstAlzheimers.

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.

National Alzheimer’s Month and National Caregivers Month

More than 5 million Americans suffer from Alzheimer’s Disease, and the disease impacts their loved ones in a huge way.

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.

Alzheimer’s Do’s and Don’ts

Introduction from Lillie: This article by my associate, Beverly Ellison, is the follow-up to her post: The Gift: Becoming Primary Caregiver for Mom with Alzheimer’s .

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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.

DO …	DON’T …
-  pray for wisdom regarding your loved one’s care.	- make a decision before you pray about it.
- assure your loved one that you want to help them.	- make your loved one feel that s/he is a burden to you.
- spend quality time with your loved one.	- neglect your loved one.
-  be patient with your loved one.	- be in a hurry.
- establish and adhere to a consistent routine.	- make frequent changes to their daily activities.
-  think of fun ways to deal with repetitiveness.	- exhibit frustration or irritability.
- keep your loved one involved in activities they enjoy.	- isolate your loved one.
- arrange regular visits with close relatives and friends.	- keep them away from those they know and love.
- encourage as much independence as possible.	- take away activities they can safely do for themselves.
- agree with your loved one … even when they’re wrong.	- argue with your loved one; s/he will soon forget.
- make regular doctor visits with your loved one.	- neglect the importance of their health and wellness.
- realize that they will say things that will hurt you.	- become defensive; remember, it’s part the disease.
- seek legal advice to protect your loved one’s interests.	- make important decisions without professional advice.
- keep accurate records of your loved one’s finances.	­- neglect documentation of all income and expenses.
- ask for help when you need it.	- try to do it all yourself.
- take care of yourself!	- ignore the need for periodic respite.

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 <><

The Gift: Becoming Primary Caregiver for Mom with Alzheimer’s

Introduction from Lillie: This is the first post from my associate, Beverly Ellison. You can look forward to more posts from Beverly in the future.

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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 <><

World Alzheimer’s Day: Wear Purple

Today is World Alzheimer’s Day, and the Alzheimer’s Asociation is asking people to get involved to end this terrible disease.

I know there are many horrific diseases that destroy the body, and watching someone deteriorate from cancer and other diseases is heart-rending. The tragedy of Alzheimer’s and related dementias, however, is that not only do they cause the body to deteriorate, but they also destroy both the mind and the personality.

My father was one of the strongest, most independent, and smartest men I ever met. He used to amaze us by solving arithmetic problems instantly in his head. “Daddy, what is 7,639 times 347?” I would ask. “Two million six hundred and fifty thousand seven hundred and thirty-three,” he would respond before I  could punch the numbers on the calculator to confirm the answer.

Our family watched Alzheimer’s destroy him over a period of seven years, and  I never want to see that happen to anyone else. Yet 35 million people are living with dementia today, and that number is expected to increase to 115.4 million in 2050.  The statistics in the 2009 World Alzheimer’s Report should convince everyone to get involved.

That’s why I’m wearing purple on September 21 and why I’ve signed up as an Alzheimer’s champion. And why I hope you’ll consider helping end Alzheimer’s as well.

A Different … and Special … Family Vacation

The Family Vacation Group Writing Project at Babylune made me think of one of the best family vacations I’ve ever had.

The theme of the project is to:

…write a post about a family vacation that you have taken as a parent or as a child. What are your memories of the main event, your favorite parts, the successes, the advice for others, the fun factor and/or the mishaps?

I’m not sure this post qualifies because the vacation I’m writing about started out as a business trip, and, although it was taken with my parents, I was an adult at the time. But I want to share this precious memory, whether it’s appropriate for the group writing project or not.

My family didn’t take vacations when I was growing up. My father was a real homebody, but even if he had enjoyed travel, it’s not likely we would have been able to go on vacation. Daddy was a chicken farmer, and you can’t leave tens of thousands of chickens while you take a trip. The chickens had to be fed and the eggs gathered, cleaned, graded, and packaged every day, and delivered two or three times a week. And the income from chicken farming didn’t stretch to taking a family of six children on vacation.

My husband is a lot like my father in many ways, not the least in being a homebody. So through our forty years of marriage, we have taken only a few vacations together. Most of the traveling I have done has been to conferences and business meetings.

About twenty years ago, an organization for women business owners offered a seminar onboard a cruise ship. The schedule allowed plenty of time for pleasure and enough training to qualify as a business expense. I’d always wanted to take a cruise, and the seminar seemed like the perfect opportunity to enjoy a new experience, gain some new knowledge, and save money. Seminar attendees and their guests received a significant discount off the price of the cruise. Since my husband had absolutely no interest in the trip, I invited my grown-up “baby” sister (she’s the youngest and I’m the oldest) to go with me.

Shortly after we made our reservations, my father called me and asked, “Why didn’t you invite Mama and me to go with you and Nancy?’

I had no idea he would even consider it and told him so. He said they wanted to go, so I made reservations for them as well.

Daddy absolutely amazed me … and wore me out. I went to bed at night before he finished playing the slot machines in the casino. He and Mama enjoyed the unlimited – and often exotic – food. He even had fun shopping in the island markets when the ship docked. I enjoyed lying on the deck reading between seminar sessions, but my parents were constantly involved in some activity. Mama, Nancy, and I all marveled at how much fun Daddy was having.

One morning while I was attending a workshop and Nancy had gone off on her own, Mama and Daddy were walking around exploring the ship. Mama got tired, and the first place they found to sit was in a theater. They didn’t know what was happening in the theater - they were just looking for a place to rest.

What was happening was the Men’s Knobby Knee Contest. A woman came out into the audience and pulled my father up on stage to participate in the contest. Several women judges felt the “knobby knees” of Daddy and other “contestants,” and Daddy was declared the winner.

My sister and I thought Mama was joking when she told us the story over lunch. My daddy was shy and reserved. No way would he let himself be pulled up on stage, much less let a bunch of women feel his knees! Yep, he had done just that. And when Mama was telling us the story, Daddy got the cute little grin that always meant he was really having a good time.

That vacation was one of the best times I’ve ever had with my parents and my sister. We spent more time having fun together than we ever had, and I saw my father enjoy himself more than I could have ever imagined.

Not long after we returned from that wonderful trip, we started noticing that Daddy was forgetting things and becoming easily confused. He was diagnosed with Alzheimer’s and began to lose more and more of his abilities. After he had a heart attack, he could no longer communicate with any consistency. Though he had moments of lucidity for some time, he was totally incapacitated, physically and mentally, for several years before his death.

Unbeknownst to us, he was in the early stages of Alzheimer’s when we took the cruise. One of his first symptoms was the loss of his inhibitions. Our family vacation happened at just the right moment for him to be spontaneous and outgoing without any loss of mental ability.

After Daddy died, my mother gave me the little plastic “First Prize” trophy that he won in the knobby knees contest. Every time I look at that tacky little trinket I say a prayer of thanksgiving for the precious time we had together before we lost him to that horrible disease.

Updated 9/1/07: I am thrilled that Kate selected this post as the winner! Thank you, Kate, for sponsoring the group writing project and especially for choosing my post as the winning entry.