As family caregivers to those with Alzheimer’s or other forms of dementia, we can feel helpless in the fact of such a brutal disease. What could we possibly do to help find a cure or effective treatment? While we know researchers are hard at work, they can seem far removed from the daily grind that a family finds themselves in when dealing with dementia.
Joining a registry is a simple way to contribute to the cause. I belong to the Alzheimer’s Prevention Registry. According to the registry, 80 percent of studies are delayed because too few people sign up to participate. So you can really make a difference.
A new registry, the Synexus HealthyMinds Registry is seeking those 50 and older in the U.S. who do not have an Alzheimer’s diagnosis. The registry is free to join and all participation is done online for your convenience. Once a year, you will be asked to fill out a health and lifestyle questionnaire and take a series of online tests to gauge cognitive function. The registry I participate in is similar and I actually enjoy the tests because they are like brain games.
Check it out and if you are interested, please join and share with others. We are all in this important effort together.
I’ve been thinking about Mom quite a bit this week, as Saturday would have been her 82nd birthday. Since her birthday falls so shortly after the Fourth of July, I always think about her brief, but beloved Navy career during this time of year.
Mom was raised on a farm, and knew the hard work and dedication it took to not only feed a family, but raise livestock and crops to help feed a community. Upon finishing high school, she declined to go to college and instead entered the workforce, working jobs that were typical for women in the day, such as nursing aide and receptionist.
In her late twenties, she decided she wanted something more, so she joined the Navy. Her service was during a brief period of relative peace in the world, and she was assigned to naval stations in the U.S. versus being sent abroad. She always spoke fondly of her time in the Navy, even with its challenges.
She could’ve had made a career out of military service, but opted out after honorably serving for three years. She returned to civilian life, working office jobs and eventually settled in as a proofreader, her excellent attention to detail no doubt enforced by her military service.
A few years later, she met my dad, got married, gave birth to me and the rest is history.
I was shocked and saddened to learn that Pamela Jo Van Ahn, executive director of Amy’s Place, died on June 15th.
If you’ve followed my blog for awhile, you’ve heard me talk about how much I loved Amy’s Place, serving those with Alzheimer’s and other dementias and their caregivers. It was such a welcoming, non-judgmental environment, and offered numerous cultural and education events each month.
I loved Pam’s passion and compassion. She was so giving of herself and fiercely devoted to helping caregivers. She was humble and reluctant to accept praise for her work. When she was nominated for a caregiver award earlier this year, she said in an email: “It is not easy for me to be recognized for something I did with a lot of support, help, and caring from others–like you…”
Pam was so supportive of my areas of caregiver advocacy. She introduced me as “the author” when I published my first book, The Reluctant Caregiver, and allowed me to test my care bag prototype that is an integral part of Respite Care Share with members of the Amy’s Place caregiver support group.
As I was reeling from the news of Pam’s death, I read a piece by a former colleague of mine who just lost his 20-year-old son to cancer. He ended his poignant essay by quoting another journalist, Mike Royko, who wrote after his wife’s death: “If there’s someone you love but haven’t said so in a while, say it now. Always, always say it now.”
We all need the sobering reminder to never take the people in our lives for granted. Never hesitate to call, email, or text your love or appreciation of them.
I am so proud to be part of the AlzAuthors group. I can’t believe the group of Alzheimer’s and dementia writers is marking its 4th anniversary! It has been so rewarding to see this group expand over the years and I applaud the hard work of the core founders who have shared our books to caregivers around the world.
If you haven’t visited the website in awhile, check out the redesign. I love it!
To mark the occasion, AlzAuthors is hosting a book sale and raffle. Choose from 19 free and discounted books. My award-winning collection of personal essays, The Reluctant Caregiver, is just 99 cents during the promotion, which runs through June 27th. (Note: Amazon is still processing the discounted rate as of Friday morning, but you can use this link to buy the book for 99 cents at other major digital book retailers right now.)
You can also enter a raffle to win free books from select AlzAuthors contributors.
Please spread the word to fellow dementia caregivers and thank you for your support!
We often overlook the powerful benefits of human touch. Learn how massage could lift the spirits of your loved one with Alzheimer’s. And don’t forget about the benefits of massage for yourself! I find a massage to be so rejuvenating.
via Amazing Benefits of Massage for Alzheimer Disease Patients — The Diary of An Alzheimer’s Caregiver
Any kind of bipartisan effort in today’s toxic political climate is reason to cheer. When it involves uncovering nursing homes offering substandard care, it’s all the more reason for caregivers to be grateful.
Pennsylvania senators Bob Casey (D) and Pat Toomey (R) joined forces to release a report titled, “Families’ and Residents’ Right to Know: Uncovering Poor Care in America’s Nursing Homes.”
An investigation into reports of abuse and neglect at nursing homes in the senators’ home state prompted the report. It focuses on struggling nursing homes that have been designated a Special Focus Facility. There are 88 nursing homes that are participants in the program. Approximately 400 nursing homes are identified as candidates. Participants receive more frequent inspections and are identified to the public; candidates are not.
What the senators wanted family caregivers like you and I to know are the names of the hundreds of SFF candidate facilities, so that we can make the most informed decision possible when it comes to our loved one’s care.
You can review a list of SFF participant and candidate facilities that’s included in the report. You can also read disturbing reports of neglect and abuse that has been reported at these facilities, which includes allowing residents to escape, providing inadequate medical care and sexual assault.
I discovered a facility that my father stayed at briefly post-surgery. At the time, the facility admitted they did not have the resources to care for my father, who was in the mid-stages of dementia and often wandered.
Much more needs to be done to ensure that our nation’s nursing homes are providing proper care to our loved ones, but providing this bit of information helps families make more informed choices.
Have to say I agree with this perspective wholeheartedly. As the author of The Reluctant Caregiver, I have empathy for those of us who often find it difficult to be Miss Mary Sunshine all of the time. Sometimes life just sucks. People mean well but the best gift you can offer in such situations is simply a sympathetic ear.
I was recently introduced to the term “toxic positivity.” I instantly knew what the term referred to, and I could relate. I see it on social media….Positive vibes only…Think happy thoughts…There’s always a silver lining…It’s a great day to have a great day. And I can remember times when I was struggling and someone shot […]
via Toxic Positivity Mongers in Dementialand — The Blog That Currently Has No Name