There has been so much bad news lately that I wanted to spotlight a story about what the younger generation is doing to support dementia research. A group of teen girls in Ireland used the pandemic lockdown for a worthwhile cause.
The mentor’s mother had dementia, which helped inspire the team to create the Memory Haven app. Designed for use by both people with dementia and their caregivers, it has features designed to address three main issues: memory loss, difficulty with recognition and speech impairment. I loved how thoughtful the app is, using tools like facial recognition and music to help lift the moods of those who are feeling down.
While the teens are a STEM (science, technology, engineering and mathematics) success story, they unfortunately faced sexism and racism along the way. I hope their inspirational story will encourage youth around the world to support dementia research.
You can learn more about the app and see it in action in this BBC report.
I was moved this week when I watched the video of a Maryland woman who was distraught because she was told by hospital staff that she would have to leave her mother-in-law, who was in severe pain and has Alzheimer’s, alone in the emergency waiting room due to COVID-19 restrictions.
As a former dementia caregiver, I can empathize with the helplessness and the frustration that Laura Kramer felt. It’s ridiculous that Kramer had to take her mother-in-law to another county in order to receive treatment and be at her side as her family caregiver. You can watch her emotional plea.
My own father had multiple trips to the emergency room in the last year of his life while he was a resident at a memory center. Their procedure was also to leave the patient at the ER once admitted because they didn’t have the staff to wait with the resident. I often thought about how confused and scared my father must have been, alone in a chaotic emergency room atmosphere.
The good news is that Kramer’s experience forced the hospital to revisit its guidelines and admit that they had made a mistake. Of course COVID-19 restrictions are necessary in a healthcare setting, but no-exception policies could have deadly consequences when it comes to caring for those with cognitive issues. Kramer’s actions should be a role model for other caregivers who find themselves in similar situations.
Totally agree with Lauren. While I experienced some sense of relief that dementia no longer had control of my father’s mind, his death was still a profound loss.
How many times have you heard someone say, “My loved one died. Well, she was sick and we knew it was coming, but still…”? Why do we feel the need to offer that explanation? Why do we feel the need to minimize our loss by saying that it was expected? Why do we diminish our […]
via We Need to Stop Minimizing the Grief of an Expected Loss — Life, Love, and Alzheimer’s
I’m always on the lookout for films dealing with caregiving issues, Alzheimer’s and other dementias, as well as those that offer an honest look at growing older. I came across two interesting movies this week that I want to pass along to kick off your weekend. The first is Senior Love Triangle and the second one is Ice Cream in the Cupboard.
These films offer a unique perspective and won’t be to everyone’s liking. For those who prefer to keep their movies more in the PG range with no profanity, you may want to take a pass. I found both films to be moving and thought-provoking, offering a raw yet empathetic look at the challenges that aging can present. More films are tackling topics such as aging, dementia, and family caregiving and I wholeheartedly support this trend.
Senior Love Triangle is based upon a photo book by Isadora Kosofsky. The story and moving images follow an 84-year-old man who is attempting to balance his relationships with 81-year-old Jeanie and 90-year-old Adina, with nursing homes serving as the backdrop. Dementia, other mental illness and how vulnerable seniors are preyed upon also are part of the storyline. Adult children often have a hard time with their elder loved ones finding romance in the care center environment, but this movie shows how important such affection and human connection is to older people.
Ice Cream in the Cupboard is about a middle-aged couple whose lives change forever after the wife is diagnosed with early-onset Alzheimer’s in her mid-fifties. The movie is based upon a true story. I appreciated how realistically the film depicted the challenges in dementia caregiving. It never shied away from the more brutal, violent aspects and never sugarcoated what Alzheimer’s caregivers may face on their journeys. However, there is also much love and devotion on display.
Both of these movies are available on video on demand. If you’ve seen these films, I’d love to hear your thoughts.
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