I recently was interviewed for a new caregiving project called Open Caregiving. The website serves as a collection for caregivers to share their experiences and offer advice to other caregivers. I was happy to participate.
If you would like to share your caregiving story, fill out this form.
One of the pieces of advice I offered that proved to be a key for me in thinking about my father’s dementia was to learn how to accept the “new normal.” While it is natural to lament what your life was like before, who your loved one with dementia was before the disease changed them, it is not helpful to be consumed with the past. Cherish those memories and try to focus on the present.
This was very hard for my mother and I to do as my father’s Alzheimer’s disease progressed further. My mother couldn’t help but correct all of the mistaken memories or gibberish that came out of my father’s mouth and I felt shame and embarrassment for my father’s state of mind. I knew how mortified he would be if he could see himself in that state of mental decline. I discuss this further in my book, The Reluctant Caregiver.
But what helped once my father was in the memory care center was simply to visit him and enjoy his company in that moment. If that meant getting him a cup of coffee or navigating him around the outdoor area for a stroll, then that was enough. I would no longer be able to discuss politics or sports with my father but I could still hold his hand and tell him I loved him.
I hope you are finding ways to adjust to the new normal as you wind your way through your own journey as a dementia caregiver.
I connected with this post on many levels. I am an only child as the author is and I often think about how various diseases, especially dementia, would challenge my fierce independent streak. There is such a valuable lesson here for those who are encountering the early stages of dementia and dementia caregivers.
When I was in my 20’s, I spent a lot of time volunteering for hospice. One of my first hospice patients was a woman in her 60’s who had dementia. Her son lived with her, but he needed a weekly respite. I was told she was active and liked to go for walks. In fact, […]
via “Solo” Walks (aka I Walk Alone But It’s Fine You’re There) — When Dementia Knocks
June is Alzheimer’s and Brain Awareness Month, a time to raise awareness of Alzheimer’s disease and to decrease the stigma and silence that too often accompanies an Alzheimer’s diagnosis.
To mark this important campaign, AlzAuthors hosts a book sale and giveaway each June. AlzAuthors is a global community of authors writing about Alzheimer’s and dementia from personal experience, whether as a caregiver or as a person living with these conditions.
I’m proud to be a part of this organization, and I’m excited my book, The Reluctant Caregiver, is a part of this sale. From June 15th through June 22nd you can get my book for half off and find great deals in a variety of genres, including fiction, memoir, non-fiction, and children’s and teen literature. Most are available in Kindle and e-book formats, and many are available in paperback and audio. AlzAuthors is proud to share its library of carefully vetted books to help guide you on your own dementia journey.
SHOP NOW: Alzheimer’s and Brain Awareness Month book sale and giveaway sponsored by AlzAuthors
This blog post written by Elaine M. Eshbaugh, PhD, has such a good message for all of us right now, especially caregivers. It is so true that you must learn to “let go” when dealing with dementia. Those of us who have been dementia caregivers have navigated our ways through “new normals” before. Stay safe and don’t be too hard on yourself.
So what’s your personal 2020 theme? (Can you answer this question without using a four-letter word that would’ve gotten you in trouble at recess?) You’ve got your personal and family challenges, which likely include dementia since you are reading my blog. You’ve got whatever chaos is happening in your community. Maybe people are arguing about […]
via Why Dementia Means Letting Go (and Why My 2020 Theme is “Let Go”) — When Dementia Knocks
This is a great list from We Are Dementia Strong. Basically it boils down to treating your loved one with dementia like the person you’ve known, not solely by their dementia. This disease tries to strip people of their humanity and its caregivers’ duty to try and maintain dignity whenever possible.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.
via Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong
With extra time spent at home in the midst of a pandemic, you may be in touch with your elder relatives more than ever. This is a great time to review the health status of your older relatives. When people are thrown off their routine, symptoms of dementia may become more apparent. This post from The Diary of an Alzheimer’s Caregiver offers excellent tips on when to consider memory care.
Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! Brain disorders like Alzheimer’s, Dementia, etc. are progressive conditions. In these diseases, the patient’s health tends to deteriorate with time.…
via How to know it’s time to consider Memory Care? — The Diary of An Alzheimer’s Caregiver
Honored to have been able to share my caregiving experience that inspired The Reluctant Caregiver included in this collection.
Life these days is turned upside down for most of us, due to the COVID-19 pandemic. There is so much uncertainty, fear, and loss. Those of us caring for loved ones with Alzheimer’s and other dementias find ourselves stressed, not only from our usual pressures but the new ones the virus has delivered: stay-at-home orders…
via Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories
The Alzheimer’s Association released their annual report around the time the coronavirus pandemic was ramping up, but I did not want to overlook the latest findings. I thought it was especially appropriate to post this today, on what would have been my father’s 88th birthday.
Here are the main takeaways from the 2020 Alzheimer’s Disease Facts and Figures report:
- Alzheimer’s is the sixth leading cause of death in the U.S. 1 in 3 seniors die with Alzheimer’s or another dementia. The death rate from Alzheimer’s has skyrocketed. Between 2000 and 2018, the number of deaths from Alzheimer’s disease has more than doubled, increasing 146%.
- More than 5 million Americans live with Alzheimer’s disease. Women make up two-thirds of that number; African-Americans are about twice as likely to be diagnosed with Alzheimer’s or other dementias compared to whites in the same age group; Hispanics are about 1.5 times as likely to develop Alzheimer’s or other dementias compared to whites in the same age group.
- Unless significant medical breakthroughs are made, by 2050, the number of Americans age 65 and older with Alzheimer’s dementia may grow to a projected 13.8 million.
- 16 million unpaid dementia caregivers provide care valued at $244 billion annually. One in three caregivers are 65 and over, and two-thirds are women. One-quarter of dementia caregivers belong to the “sandwich generation,” caring for both an aging parent and minor children.
- The cost of Alzheimer’s care to the nation is staggering. In 2020 alone, Alzheimer’s and other dementias will cost the nation $305 billion. What’s even more sobering is that half of primary care physicians believe the American healthcare system is not prepared for the growing number of those with Alzheimer’s and other dementias.
While these reports highlight the challenges we face in providing care for our loved ones with Alzheimer’s and other dementias, the Alzheimer’s Association proposes an action plan focused on education and recruitment to build up a corps of geriatric providers who understand the unique challenges that those with dementia and their caregivers face. The Alzheimer’s Association also encourages greater funding in the areas of rural healthcare and telemedicine.
The Memories Project blog is now in its ninth year, having started it shortly after my father’s death in 2011. Over the years, the blog has been featured on NPR and other outlets and has grown to be an advocacy platform for those with dementia and their caregivers.
The latest recognition comes in the form of a video, featured on Ezvid Wiki. The Memories Project is featured along with six other worthy organizations in a video titled, “7 Organizations Dedicated To Addressing Alzheimer’s.”
You can watch the video below:
Founded in 2011, Ezvid Wiki holds the title of world’s first video wiki. Its YouTube channel has over 500,000 subscribers, with nearly 300 million views since its founding.
What we eat, and how we eat says a lot about who we are. If a loved one forgets to eat, add meals because they forgot they already ate, or start altering foods in strange ways, that may be a sign that it’s time to visit the doctor. In her recent blog post, Dr. Elaine Eshbaugh discusses common ways that dementia can alter a person’s dietary routine.
With my father, it meant he had an increased appetite, but sometimes forgot how to use utensils. Near the end of his life, he forgot how to swallow, which is a more complex action than people are aware of.
We eat to live. But food is more than fuel. Food has strong ties to family rituals, celebrations, and emotions. Food is love. I’m thinking of a time, over 15 years ago, when my long-term boyfriend dumped me like a bad habit. Food started arriving in the mail. My mom send Red Vines licorice. My […]
via Dementia and Dinner — When Dementia Knocks