Those who have faced Alzheimer’s or other dementias in their families know that it can be a dreadful roller coaster ride, and while in the early stages there may be quite a few “good” days, they often seem overshadowed by the “bad” days.
One man in the UK who has early-onset Alzheimer’s is hoping to send a different, more hopeful message. He is using his beloved hobby of cycling to spread the message across the country.
Peter Berry was diagnosed with early-onset Alzheimer’s at 50, after 3 long years of trying to obtain a diagnosis for his increasingly troubling symptoms. He sank into a deep depression for about a year, but when he emerged, he was determined to help others who find themselves in a similar situation. Through a video series and on social media, Berry shares his experience and what has worked for him, including a healthy diet, regular sleep and long bike rides.
While he’s under no illusion as to what Alzheimer’s ultimately holds in store, he stresses the importance of having a positive outlook: “People who suffer from the disease know the journey and path we’re taking. We all know the end product of this disease. But it’s all about what you do in between. It is not about what I can’t do, but what I can do.”
Watch his inspiring story, produced by Being Patient, and share with others.
The phone was my mother’s lifeline, but it also served as a source of strife in my role as a caregiver.
While most people have disdain for telemarketers, my mother welcomed the calls. This was especially true once my father was placed in a memory care center, and in the period after his death. My mother was lonely and a human voice on the other end of the line, even one trying to sell her something, was a source of comfort.
My mother never bought anything from the telemarketers, but there was one time in which I became livid because I felt she revealed too much personal information. She told the telemarketer about her lottery winnings. I wanted to reach through the phone and shake her (but gently as she had a broken shoulder from a fall.)
She could not understand why I was so upset, even after I tried to explain in multiple ways how revealing that you have a lump sum of money to a stranger who has your contact information is a bad idea. It was one of the few times I literally hung on up her out of frustration.
I wish my mother had the teleCalm service back then. It offers a host of senior-friendly options and features that are useful for caregivers. The Essentials service replaces the current home phone service of your elder loved one, replacing it with a monitored service that can filter out scam and telemarketer calls. An additional service provides caregivers with a smartphone app that includes monitoring features that can be accessed remotely.
For those with dementia and their caregivers, teleCalm could help ward off predators and scam artists who try to take advantage of those with impaired cognition. If you have used the service, I would love to hear your feedback.
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 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!
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
The week of May 6-May 12 is National Nurses Week. Caregivers of loved ones with chronic conditions resulting in frequent hospital stays get to know the profession and its members quite well.
Being a nurse means often seeing people at their worst: in pain, with mental confusion, combative or frightened. Nurses who treat those with dementia know an extra level of care and patience is required.
Nurses sometimes get labeled as superheroes but they are human, with their own families and struggles. But when they come into work, they attempt to put their own troubles aside to make someone else feel better. It’s a true act of giving.
I am grateful for the nurses who cared for my father and mother during their hospitalizations. One particular incident that stands out in my mind were the nurses at Presbyterian Hospital in Albuquerque. When they found out that it was my parents’ 40th wedding anniversary, they brought my mother a slice of cake while we were in the ICU room with my father who was in a medically-induced coma. Those busy nurses didn’t have to take the time to make that sweet gesture, but they did. I’m forever grateful.
If you know a nurse who has touched your family’s life in a positive way, reach out this week to let them know.