Today is the big day! As I wrote previously, I am so honored to have a story about my father included in the latest “Chicken Soup for the Soul” book. This special edition is dedicated to those with Alzheimer’s or other dementias and their families. The collection includes stories of love, compassion, inspiration and yes, even humor. The best part is that the book is a collaboration with the Alzheimer’s Association, and all royalties will go to the Alzheimer’s Association to help spread awareness about this terrible disease. The book, “Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” goes on sale today, at all major book retailers and online outlets.
As many of you reading this find yourself the family caregiver of someone with Alzheimer’s, I know you will appreciate the book. It would make a thoughtful gift for anyone coping with Alzheimer’s in their family. If you cannot afford to buy the book, request it at your local library. You will laugh, you will cry and you will gain a greater appreciation of the strength of family caregivers.
If you are curious, my story is titled, “French Toast,” and appears in “The Lighter Side” section. Some of my favorite stories were the funny ones, surprisingly. I loved the one about the mother-in-law who hated cats but had a surprising reaction to a feline when she is in the mid-stage of Alzheimer’s. I also loved the story about the mother with Alzheimer’s who wakes up her daughter in the middle of the night to tell her there is a bird in the house. You’ll have to read the book to find out the wild ending of that story!
I know that wherever Dad’s spirit is now, he would be proud of me for being a part of this project.
Easter makes me reflect on pleasant childhood memories. I wasn’t big on dressing up, but I guess Mom managed to finagle a dress on me for some Easter photos. I’m glad that she did, because I do love this photo.
Easter makes me think of lovely springtime weather, and plastic eggs filled with jelly beans. I can still remember the scent they had. I remember racing through grass looking for hidden eggs at hunts at the local park.
Happy Easter for those who celebrate, both religious and secular versions of the holiday. I know that this is a holiday of hope and renewal for many. Those are two concepts we don’t often associate with Alzheimer’s and dementia. But as caregivers and family members of those with dementia, we need all of the hope we can muster.
Today I want to highlight a nonprofit organization that I just stumbled upon. They’ve been around since 2009, so many of you may be familiar with them, but I wasn’t. The group is called The Spaces Between Your Fingers Project and the group writes memory snapshots for people with Alzheimer’s that are recorded on postcards and sent to families. The service is free, and a copy of the memory postcard is kept in the Free Library of Philadelphia for archiving purposes. The organization has collaborated with the Alzheimer’s Association in the past. The group also has set up an online tool that allows anyone to record a memory postcard, whether they have dementia or not.
I love this concept, it is so unique and is a great way to encourage people to record family memories. If you are wondering what “the space between your fingers” means, there is a lovely storybook on their site that takes you through the very touching tale inspired by the founder’s grandfather. You may look at Alzheimer’s in a whole new light.
I plan on giving the service a try soon and will share what I create.
What is the first memory from your life that you would want to preserve?
Today would have been my father’s 82nd birthday. He is so missed each and every day, but I am thankful that Alzheimer’s didn’t keep him trapped in a diseased world for any longer than it did.
But today is a reminder of why I have become an Alzheimer’s awareness advocate. I have become a more compassionate, aware person thanks to my father. To honor my father, and to help those who are going through the same thing with their own parents is now part of my life’s mission. I can no longer give my dad birthday gifts in this world, but trying to make a difference and battling the terrible disease of Alzheimer’s is a gift I will continue to give for the rest of my life.
I’ve posted this before, but I want to share again this montage of photos and my dad singing to me when I was a baby.
I’ve finished reading my advance copy of Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias and I am deeply moved by the brave and loving stories shared in this collection. As we approach the release date of April 22, 2014, I will be blogging about some of the stories that I found particularly touching.
One such story was about a man who had been married for many, many years to the love of his life. Once his wife was diagnosed with Alzheimer’s, he tried his best to adapt their lives to deal with the disease. One area where his wife really struggled was with telling time. For those of us who have dealt with Alzheimer’s in our own family, we are all too familiar with the “clock test” and how that is used as one marker to determine a person’s cognitive functioning. My dad never took the test that I am aware of, but my mom did. My mom does not have dementia, but when she developed cancer, she was so ill that she stopped eating and her potassium levels dropped dangerously low. This can impact cognitive functioning, and boy, did it ever. I watched my mom struggle to draw that clock, and I thought my mom was facing the grim future of my father. Fortunately, her cognitive function was restored once her illness was treated.
But back to the story. After the wife repeatedly asks the husband in the span of a short time when dinner is, the man puts on his thinking cap. Knowing that she cannot tell time now by a traditional clock, he sets out to recreate the tool we use to tell time. He removed the second hands and the minute hands, leaving only the hour hand moving. He then places a piece of tape above the hour they are going to eat. With the simplified version of his clock, his wife can now understand when their next meal will be, relieving a bit of stress for both of them.
Will there come a time when his wife will not be able to understand even the reconfigured clock? Probably. But the love and wisdom shown in the husband’s actions will definitely withstand the test of time.
If one had to pick a holiday to associate with Alzheimer’s, it would definitely be April Fool’s Day.
Our loved ones with early to middle-stage Alzheimer’s often appear so normal, just how they’ve always looked to us. (During the latter stages of Alzheimer’s, the physical symptoms of the disease tend to be more readily apparent.) But then they open their mouth, or don’t respond to their name, or don’t recognize that you are their loved one, and it is like the cruelest April Fool’s joke in the world.
If only our loved ones were pulling off such a prank, and could snap back into their old selves while laughing and shouting, “April Fool’s!”
As I’m reading the wonderful stories in the upcoming “Chicken Soup for the Soul Living with Alzheimer’s and Other Dementias” book, I found two Alzheimer’s-related behaviors that fascinate me. One relates to April Fool’s in that humor can still be found in the Alzeimer’s experience. Often it is unexpected or unintentional humor, but it is there if you seek it out. The other is the way the disease works on the brain and how people with even mid- to latter-stage Alzheimer’s can sometimes have a lucid moment. Time and time again, people described how it was like a veil was lifted, or the fog dissipated, albeit temporarily. I remember experiencing this with my father, and what precious moments those were for me.
But then Alzheimer’s would cry, “April Fool’s” and my dad’s mind would be lost in the fog of dementia once again.