Tag Archives: caregivers

The Rest of the Chicken Soup for the Soul: Family Caregivers Story from Wendy Poole

The rest of the Chicken Soup for the Soul Family Caregivers Story Wendy PooleBack in April, I posted my thoughts after reading all the moving stories in Chicken Soup for the Soul: Family Caregivers. I specifically mentioned the story “Remembrance” by Wendy Poole as my favorite dementia story, but I wondered why Wendy and her mother shared only six weeks of happiness at the piano with Wendy’s mother singing show tunes while Wendy played for her.

Recently I was delighted to learn the rest of the story from Wendy herself, as she contacted me to answer my question. As it turned out, her mother’s illness had progressed to the point that she needed to be moved to a nursing home. The piano recitals were no longer possible from the new facility, and the therapeutic ritual became another short but sweet memory in Wendy’s Alzheimer’s journey with her mother.

All dementia caregivers have stories to share, events in the progression of this devastating illness that have changed them profoundly. While these stories are all personal tributes to loved ones, there is a bittersweet commonality between them to which all caregivers can relate. Wendy was kind enough to share another of her stories with me, one she originally submitted to her local newspaper for Alzheimer’s Awareness Month. Thanks to Wendy for filling in the blanks and also allowing me to share her poignant story with others here.

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Why Do I Walk To End Alzheimer’s?

Alzheimer's disease is a runaway trainWhy do I support the Walk to End Alzheimer’s event sponsored by the Alzheimer’s Association each year? Because Alzheimer’s is a runaway train headed at full speed straight towards me and my siblings. I hear the train whistle blaring its approach in my dreams, but I cannot escape this train no matter how I try. Due to my family’s genetic vulnerability from a parent afflicted with Alzheimer’s, we remain helplessly tied to the tracks, unable to escape while dementia bears down upon us. There is no telling when it will arrive and how many it may hit, but from a family of five children it will likely find a target with one or more of us.

I want to find a cure; I want to spare my siblings. Most of all, I want my children to remember Alzheimer’s disease like it was smallpox or polio, a thing of the past that cannot ever touch or hurt them. I will be volunteering at the Walk to End Alzheimer’s in Springfield, Illinois on September 22 at Southwind Park, helping to set up and find candidates who might be a good match for new clinical research trials. I look forward to connecting with other caregivers who have been forever changed by Alzheimer’s disease and who pray for a cure like me. Please join me by attending or donating to a Walk to End Alzheimer’s in your area. Together we will one day create a world without Alzheimer’s disease.

Book Review: Dignifying Dementia with Love

Dignifying Dementia by ElizabethTierneyWhile on vacation, I had the chance to read Dignifying Dementia: A Caregiver’s Struggle by Elizabeth Tierney. First and foremost, this nonfiction book is a guide for caregivers offering all the nitty, gritty details of how difficult it is to personally care for a loved one at home through all the demanding stages of dementia from beginning to end. It is more than that, however, because it is also a beautiful love story.

Anyone seriously considering taking on the full-time responsibility of caring for a spouse, parent or loved one with any type of dementia should read this book for an insider’s look at the daunting challenges ahead. Not only are the odd symptoms and behavior of dementia sufferers explained, but also other concerns that caregivers may not think about as important in the earlier stages of the illness, like the extensive medical and personal supplies required, the need for a strong support network offering respite, the backbreaking labor and physical considerations, the importance of geographic location, weather emergencies and transportation issues. Dignifying Dementia offers a helpful guide so that caregivers might recognize potential problems in advance and prepare to eliminate future difficulties.

This documentation of Elizabeth Teirney’s nine-year caregiving journey with her ailing husband Jim proves her love and devotion without a doubt. She was ultimately successful with her goal to maintain her husband’s dignity throughout an illness that can easily strip the afflicted of every last trace of respect within the medical community and our impatient, fearful and uneducated society.

I truly admire the author for her efforts and the loving decisions she made on behalf of her husband, listening to his requests and remembering his desires all along the way, even when he was no longer able to communicate them. For example, as the illness progressed the author realized she must find a break from her caregiving duties and explored daycare options, but her husband objected to one particular dementia daycare program she explored. She immediately moved on to other alternative solutions within her own home because her husband did not like the atmosphere or people.

I would recommend anyone facing the task of dementia caregiving read this book for a positive example of what is really involved when caring for a loved one with dementia and how to do it on your own terms while keeping your loved one’s desires a priority along the way. Congratulations to Elizabeth Tierney for a caregiving job well done and for sharing her experience and discoveries. There is much to learn from her extraordinary example to provide the proper care for dementia patients with dignity and respect. I can’t think of any greater example of love.

Family Caregivers Local Author Event at Barnes and Noble

It was such a treat to participate in the Chicken Soup for the Soul: Family Caregivers book signing yesterday at Barnes & Noble as a contributing author along with Jean Ferratier. I want to thank the Springfield, Illinois Barnes & Noble for hosting this local author event, and I’d especially like to thank everyone who came by to see us over the two hours we were at the bookstore. Jean and I both had the opportunity to discuss and read excerpts from our stories. I feel so fortunate to have my story included in this book, and it was wonderful to talk with other caregivers and hear their feedback on my story. So many people shared their own caregiving stories, and it was a privilege to be entrusted with this personal information. Here are some photos that capture this special event celebrating family caregivers everywhere.


My story in Chicken Soup for the Soul: Family Caregivers

Chicken Soup for the Soul: Family CaregiversI just found out that one of my stories will be published in Chicken Soup for the Soul: Family Caregivers: 101 Stories of Love, Sacrifice and Bonding, and I’m pretty excited about it! The book will be released in March and include my story titled “Changing My Expectations.” I was just as thrilled to learn that another writer from my hometown of Springfield, Illinois named Jean Ferratier will also be featured in this same book with her story “Dry Her Tears.” What a coincidence that out of 101 stories, 2 of them are from writers living in the same city, especially a small city such as ours. Jean is also the person who encouraged me to submit a story for this book, so I’m grateful to her and happy we are both contributors.

Wondering what “Changing My Expectations” is about? I’ll tell you! It’s about my mother, and I’d call it an honest depiction of an end-stage Alzheimer’s patient, along with the coping strategies needed to deal with a loved one in this heartbreaking condition. The story is based on my real-life visit to see my mother on her 75th birthday.

Sadly, this turned out to be her last birthday as she died only two short months later, but I had no idea the end was so near when I wrote this story. It’s an excerpt from my book, and I am happy to share it in the Chicken Soup for the Soul book series.

I’ll have more information on Chicken Soup for the Soul: Family Caregivers and my story as the release date nears, so stay tuned!


November is National Alzheimer’s Disease Awareness Month

Alzheimer's Disease National Commemorative Candle LightingEach year, November is dedicated as National Alzheimer’s Disease Awareness Month. It is an especially significant time for me to reflect on how this disease has changed my life. Anyone who has witnessed a loved one struggle and eventually succumb to dementia is forever changed by this gut-wrenching, heartbreaking, and incurable disease. By its very nature, Alzheimer’s will destroy you as it claims your loved one. It will chew you up and spit you out as you stand by, helpless to stop the progression and inevitable outcome.

The key to emerging from the devastation for me was to find acceptance by determining what I have learned from Alzheimer’s, and then to use that knowledge wisely, both to make me a better person and to help others when possible. I don’t wish Alzheimer’s on anyone, but I do continue to hope that what people find beyond the finality of Alzheimer’s will help them see more clearly and live more purposefully. This is what I have gained from my mother’s journey through Alzheimer’s disease.

Following are a few of the numerous events to be held in conjunction with National Alzheimer’s Disease Awareness Month.

October 31, 2011: Loving and Living with Alzheimer’s Disease

A photography exhibition recognizing the contributions of Alzheimer’s patients and their families will be open for public viewing from 9 to 10:30 a.m. in the Russell Senate Rotunda, Capitol Visitor Center, Washington D.C. The photographs, taken by renowned photographer Judith Fox, chronicle her husband’s journey with the disease and provide a rare insight into caring for a loved one with Alzheimer’s. Registration is required, see link.

November 13, 2011: National Commemorative Candling Lighting

To honor those who have been lost to the disease or currently live with the disease. I will light a candle in memory of my mother, and pray for all those who have fallen to this disease, as well as all those who have been affected by it – caregivers, family, and friends. Click on link to find a local ceremony near you.

November 15, 2011: National Memory Screening Day

If you suspect cognitive impairment, either for yourself or a loved one, early detection is key to pinpoint the exact problem and offer solutions and options as possible. Do it for yourself or a loved one if you suspect Alzheimer’s disease. Click on the link to find a memory screening in your community.

Alzheimer’s is the sixth leading cause of death in the United States and an epidemic is predicted as baby boomers age over the next twenty years. November reminds us all to be aware . . . . . and to learn more . . . . we must find a cure.

Image courtesy of { pranav }

Caregivers Setback: Senior Day Care Service Closing?

Caregivers need respite for long-term elder careFrom an Alzheimer’s and dementia perspective, I’m puzzled by the announcement of a senior day-time care service closing in my area due to declining enrollment. With all the statistics pointing towards an Alzheimer’s epidemic as baby boomers age, why is it that in Springfield, Illinois, fewer people are in need of supervised, safe day-time care for aging or disabled seniors? This is definitely a setback for current and future caregivers in need of respite from the 24-7 difficulties associated with caregiving for a loved one with dementia. It seems to me that more of these types of services are needed to keep those afflicted with dementia out of nursing homes for as long as possible.

Even this article mentions how the declining enrollment is against the trend in the state as a whole:

That trend in the Springfield area conflicts with what state officials are seeing elsewhere in the state.

And Shirley Kirk, whose mother was in the program being closed, offers a voice of reason to the whole situation:

“The need has got to be out there in the community,” she said. “There are generations of old people who don’t have a lot of options.”

We seem to be moving backwards with regards to the overwhelming physical and financial burdens of long-term elder care, and it worries me to read about such things happening right here in my hometown. The demand is coming and caregivers need help. We all need to prepare, and this is not the way to do it.

Memory Loss Conference on Dementia and Alzheimer’s Disease

Memory Loss Conference on Alzheimer's Disease and DementiaThe 16th Annual Memory Loss Conference takes place on November 7-8, 2011 in Springfield, Illinois, and I just registered to attend for the first time this year. I’m looking forward to this as an educational opportunity to learn more about Alzheimer’s disease and dementia from local authorities on the subject as well as nationally recognized experts. The first day of the conference is geared towards the general public, including persons with memory loss, family members, caregivers and others interested in issues related to memory loss. While I previously fell into both the family members and caregivers categories while my mother suffered through Alzheimer’s, now I’m simply categorized as others interested in issues related to memory loss.

I’m particularly interested in the following two sessions from the six offered on the first day of the conference:

Session 1 is titled “What is Dementia?” and presented by Dr. Tom Ala, the interim director at the Center for Alzheimer’s Disease and Related Disorders at SIU School of Medicine. While this looks like a good introductory overview of dementia, I’m more interested in hearing Dr. Ala speak for the first time after reading a local article on his first-of-its-kind study to focus on Alzheimer’s caregivers, instead of those suffering from Alzheimer’s, to examine caregivers stress levels, physical fitness and psychological health. Knowing first-hand the extreme, long-term difficulties that Alzheimer’s caregivers and families face, I’d really like to learn more about Dr. Ala’s clinical research with caregivers and how that is progressing.

Session 2 is titled “Unlocking the Silent Prison: Strategies for Communicating with Persons with Dementia” and presented by Michelle S. Bourgeois, a Professor at Ohio State University. Because I’ve written previously about Michelle Bourgeois’s ground-breaking strategies for better communication with dementia sufferers, I feel very fortunate to have the opportunity to hear her discuss these tactics in person right here in my hometown.

The Memory Loss Conference agenda includes four other sessions during a full-day scheduled from 8 a.m. until 4 p.m., so I’m certain to learn many other interesting details regarding Alzheimer’s and dementia. Stay tuned for my future discoveries from this conference!

Photo courtesy of SIU School of Medicine

Community Input Sessions for NAPA Hosted by Alzheimer’s Association

NAPA Community Input Sessions by Alzheimer's Association August 2011The Alzheimer’s Association is hosting community input sessions all over the United States in August 2011 to gather feedback from various communities about their personal concerns regarding Alzheimer’s disease. These findings will then be documented in a report presented to the government for use implementing the National Alzheimer’s Project Act (NAPA), a law passed in January 2011 requiring the federal government to create a national strategic plan to address the growing crisis of Alzheimer’s disease for sufferers, caregivers, family and the healthcare industry.

This is your chance to voice your own opinion on the devastation of dementia, how this disease has negatively impacted your life, and the things that would help in your struggle. President Obama discusses NAPA and the community input sessions in the following video and stresses:

“You represent the front lines in the battle against Alzheimer’s disease.”
President Obama

These are the sessions taking place closest to me:
Peoria, IL NAPA Input Session, August 13, 2011 at 10 a.m.
Belleville, IL NAPA Input Session, August 24, 2011 at 5:30 p.m.

You can search for an Community Input Session near you here and register to attend, or you can submit your comments and concerns about Alzheimer’s disease online right here and now. Have you got something to say about Alzheimer’s disease? Now is the time to let your voice be heard!

Family Caregivers Face Physical and Financial Burdens

Caregivers physical and financial burdens for lending a hand with heartThe cost incurred by children who are caregivers for their elderly parents is both physical and financial according to the recent Wall Street Journal article Toll of Caring for Elderly Increases. The health problems associated with adult children caring for their aging parents while working and tending to their own families has been well documented: stress, depression, hypertension, diabetes, pulmonary disease, overuse of tobacco and alcohol, and lack of preventative health screenings for themselves. But caregiving has another serious cost, and it directly affects bank accounts by threatening the financial security of those who tackle caregiving duties, not only through lost wages, but also lost pension and social security benefits. The critical factor in this caregiving scenario is that these family caregivers are nearly all over the age of 50 themselves, and therefore do not have the necessary time to make up for their lost earnings before facing their own retirement and health concerns. With an estimated 10 million people over the age of 50 facing this daunting physical and financial predicament (the number has tripled since 1994), the future seems uncertain and dire, especially for women who are much more likely to inherit elder care duties for ailing parents.

These physical and financial difficulties are compounded for caregivers of those suffering from Alzheimer’s disease and dementia because the duration of the various stages can be experienced for up to twenty years. Something’s gotta give to help caregivers with these difficulties as people continue to live longer and the cost of caregiving skyrockets out of control. I don’t have the answers to this problem that will grow with alarming speed based on the Alzheimer’s epidemic predicted as the baby boomers age in the next twenty years, but I certainly recognize the problem and the impact it will soon have on us all.

Here are some alarming financial statistics for caregivers courtesy of MetLife, read the article for further information.

Average losses in wages, pension and Social Security benefits over a person’s lifetime:
Men: $283,716
Women: $324,044

Percentage of men and women providing care for an aging parent:
1994: 3%
2008: 17%

1994: 9%
2008: 28%

Image courtesy of Pink Sherbet Photography