I’ve just received my marching orders to participate as a volunteer in the Alzheimer’s Association’s Forget Me Not Days annual fundraiser. On Saturday, May 19, I’ll be working at a local grocery store raising awareness of Alzheimer’s while collecting donations and handing out packets of Forget-Me-Not flower seeds to plant in honor of those currently suffering from this disease. I’m looking forward to helping with this national initiative in my own small way right here in my own hometown. Maybe I’ll see you next Saturday during the Alzheimer’s Association Forget Me Not Days? If not, watch for others out there in your community and please help if you can to support those suffering from or caring for a loved one with this horrible disease.
I’ve finished reading all the stories in Chicken Soup for the Soul: Family Caregivers now and really enjoyed this book, and not just because my story “Changing My Expectations” is included either! Here are a few interesting facts I’ve discovered:
101 stories are included from family caregivers dealing with a wide variety of illnesses and health problems of loved ones
12 stories deal with dementia/Alzheimer’s disease
3 stories are written by authors from Springfield, Illinois
12 stories focusing on dementia out of 101 total is a pretty high concentration on one singular disease. This makes perfect sense to me, however, knowing the devastating and enduring nature of dementia; people naturally want to share their most difficult experiences and what they learned from it, and for that reason I can see how dementia would generate an overabundance of material. I am honored that my story was included along with the others to communicate the struggles and insight gained as a dementia caregiver.
It does seem a little strange to me that 3 authors in the book are from Springfield, Illinois, seeing how Springfield is a pretty small city. But I’m delighted to be a contributor along with two other Springfield authors, Jean Ferratier and D.R. Ransdell.
My favorite Alzheimer’s story is “Remembrance” by Wendy Poole, who talks about playing an old, out-of-tune piano with her mother. It is a beautiful example of stumbling upon a way to reconnect and enjoy the company of a dementia patient by tapping into a pleasant experience from the past. In this case, Wendy’s mother loved to sing when she played the piano as a young girl and remembered it as Wendy started to play once again. Music has always been such an important part of my own life, and I relate completely to its universal ability to bring people together. I find this story so heartwarming for that reason. The author mentioned in her story that these piano playing sessions brought six weeks of happiness with her mother, and I was left wondering why only six weeks? I guess I may never know the answer to that question.
Music was always a good way to connect with my mother too, especially Neil Diamond music. She adored him and his music always brightened her spirits. How about you? Have you found special ways to connect with someone suffering from dementia? It usually involves reminding them of something special from their youth. Please comment and share!
What an interesting perspective this film shows – no narrator, no commentary, no experts or doctors pontificating. Just one hour shown in the life of a woman named Lee Gorewitz afflicted with Alzheimer’s disease from the Alzheimer’s care unit in which she resides. Occasionally you can hear someone off-camera asking a question, but mostly you hear Lee herself rambling on. And ramble she does, all the while making little sense with her odd comments and constant barrage of chatter.
This reminded me so much of my own mother in the middle stages of Alzheimer’s. She and Lee shared some very similar habits – the roaming and constant movement, the mood swings and mixed emotions, the utter confusion at times, playing with dolls and stuffed animals, the anger expressed towards her children.
The film showed the childlike exuberance and heartbreaking reality both, switching back and forth indiscriminately. Lee dances so sweetly to music one minute, then curls up on her bed and lets out a gut wrenching wail after confessing, “Suddenly I’m tired, and I don’t know why I keep doing this.” She compassionately comes to the aid of another female resident and pushes her around in her wheelchair for comfort, then quickly turns and lashes out angrily at a man by hissing, “You are going to die.”
If you don’t have a clue how devastating Alzheimer’s disease can be, this film will get you up to speed very quickly. Search for it on your PBS station under “Independent Lens,” I highly recommend it.
I’ve noticed no one dares to show end-stage Alzheimer’s disease. Early to mid-stage seems to be much safer and more acceptable territory to explore. When will someone be brave enough to prepare others for the end-stage of Alzheimer’s? This is the stage that is the hardest to witness and bear. I’m thinking no one may ever show end-stage because this disease is so cruel at the end. Here is what I’m left wondering – where is Lee Gorewitz today? This film was shot in 2009, almost three years ago. Is Lee Gorewitz still struggling in her own private dementia hell or has Alzheimer’s claimed her life? You can’t help but love her and feel for her after watching this film, and an update on her current status would have been a nice touch.
Following is a clip of the film. Have you watched this film? If so, what did you think and take away from it?
This is an unusual and startling perspective to witness this disease from, and the description of this film reminds me of the book Still Alice by Lisa Genova, although much farther along in the progression of the illness. I have this set on my DVR already to watch, check your local PBS listings and search for the program “Independent Lens” to find it. I’ll share my thoughts after I watch it, and I’d love to know what you think about it too. Please check it out and come back to comment.
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.
The Alzheimer’s Association recently released updated facts and figures on Alzheimer’s disease for 2012. As numbers continue to rise, there are some startling statistics that illustrate the impact of this growing healthcare and caregiving epidemic.
Someone new develops Alzheimer’s diease every 68 seconds
Alzheimer’s disease is the 6th leading cause of death in the US
There are over 15 million Alzheimer’s and dementia caregivers in the US
These 15 million dementia caregivers equal the population of the fifth largest US state – Illinois – where I live
Since 2000, deaths from Alzheimer’s disease have increased 66% while deaths from other major diseases have dropped
Alzheimer’s cost the US $200 billion annually, and caregivers share this huge financial burden
Awareness is our hope for a world without Alzheimer’s disease. Please share this information with others. Facts and figures courtesy of the Alzheimer’s Association.
Nothing more exciting than a box of books showing up on the front doorstep. Wait, let me explain further! Nothing more exciting than a box of books including one of my stories showing up on the front doorstep! Take a look at the box of Chicken Soup for the Soul: Family Caregivers books I received recently. I’m working my way through the book before its official release on March 13 and reading some great stories. Can’t wait for the book signing at Barnes & Noble in Springfield on March 24!
Here is the story behind my story in Chicken Soup for the Soul: Family Caregivers – Kathleen H. Wheeler
Chicken Soup for the Soul inspirational book series responsible for bringing two Springfield, Illinois writers together as friends and contributing authors in new Family Caregivers release.
Ladle up a double bowl of chicken soup with a distinct Springfield flavor courtesy of local authors Kathleen H. Wheeler and Jean Ferratier. Both of these central Illinois writers have stories featured in Chicken Soup for the Soul: Family Caregivers to be released on March 13, 2012. The newest title in the inspirational book series includes 101 stories of love, sacrifice and bonding as support and encouragement to family members caring for loved ones with chronic and life-threatening illnesses.
It is more than just a coincidence that Wheeler and Ferratier are featured together in Chicken Soup for the Soul: Family Caregivers. The inspirational book series is actually responsible for bringing these two authors together in the first place. Wheeler introduced herself to Ferratier after learning about her publication in Think Positive through the local newspaper.
“Jean and I share common interests and life experiences, and I felt certain she was someone I needed to get to know better,” says Wheeler. “We were both caregivers for mothers afflicted with Alzheimer’s disease, and we both felt it was necessary to write about the life-changing lessons we learned from that experience. I contacted Jean through LinkedIn, and our relationship progressed naturally from that point.”
After corresponding and sharing advice, the two stayed in touch, eventually met, and attended an author lecture together. When a call for entries in Chicken Soup for the Soul: Family Caregivers went out, Ferratier urged Wheeler to submit a story for consideration along with hers.
Fortunately, stories from both Ferratier and Wheeler were selected for inclusion in the book, and the two friends are thrilled to share the spotlight together as featured authors in the same publication.
Both my teenage daughters are so into The Hunger Games trilogy of books and kept bugging me to read the first book. I finally agreed after putting it off for far too long. I started this week and ended up reading from 9:30 p.m. Friday night until almost 2 a.m. Saturday morning to finish it up. And I must admit, not many books would keep me up that late (or early) to finish reading! I really enjoyed the story, it was an easy read for me. I think the concept of pairing a reality show theme with politics is brilliant. Since I’m a big fan of the Survivor reality show, I got into The Hunger Games in the same kind of way. My daughters and I now await the movie release of The Hunger Games, set for March 23, 2012. I guess I’m gonna have to find some time to read the second and third book in the series too, but I need to catch up on my sleep first!
Check out this movie trailor for The Hunger Games, good stuff! Have you read this book? Are you looking forward to the movie?
I’ve just received my marching orders to participate as a volunteer in the Alzheimer’s Association’s Forget Me Not Days annual fundraiser. On Saturday, May 19, I’ll be working at a local grocery store raising awareness of Alzheimer’s while collecting donations and handing out packets of Forget-Me-Not flower seeds to plant in honor of those currently suffering from this disease. I’m looking forward to helping with this national initiative in my own small way right here in my own hometown. Maybe I’ll see you next Saturday during the Alzheimer’s Association Forget Me Not Days? If not, watch for others out there in your community and please help if you can to support those suffering from or caring for a loved one with this horrible disease.
