I enjoyed meeting Mark and Graham as they make their way around the globe discovering startups. As can happen on a road trip, The Startup Van broke down in Atlanta and was in the shop for repairs, so they stopped into Atlanta Tech Village to meet a few of us. @Startup_van @ATVTechVillage
Sunday will be my daughter’s birthday. It’s the second one we’ll spend without her Mom. While I was thinking about a ways to celebrate, I remembered many other birthdays. The year we decorated her room with everything yellow and white. The traditional ones at Chicago’s Ron of Japan. Years in New York at places like the Hard Rock Café, and Patsy’s. Her 13th at Windows on the World during a thunder storm. Her sweet 16 trip to Aruba. Suddenly, so many images of previous celebrations rushed into my mind. I realized that we were blessed to have had all those moments together. Not just birthdays, but holidays, and other gatherings as well. Maybe we didn’t appreciate this until now when it’s no longer the way it used to be. Yet, what if, we never had those good times, those tender moments, and shared experiences together. What if, we never had the laughter and tears, successes and failures to share? Then, we would not have wonderful memories to give us comfort when a beloved member of our family is no longer with us. I think this birthday celebration should include recalling those memories. Some laughter, and probably some tears in honor of our missing matriarch. What if, she had never been ours to share?
With love, to our daughter on her birthday.
I would guesstimate that it was around 7 years from the time we saw clear signs of my mom's dementia until the disease took her life. I realize that if we'd had a seven-year hourglass, we would have mom "with us" until the top was about half empty. Three plus years, or so, to make plans and live life differently in ways that would have had a profound effect on the quality of life for both mom and dad. But like so many families, we spent those early years caught up in a web of fear, stigma, guilt and denial. By the time we got mom diagnosed her disease was so far along that we spent the time from her diagnosis to her death reacting and responding to one bad situation after another. We never caught a break. Looking back on the odyssey Alzheimer's put us through, I often wonder, what if...
What if our primary care physician was as concerned about the early symptoms of Alzheimer's and dementia as other diseases? Today with even a modest uptick in your cholesterol, your doctor will probably recommend you start taking a statin, and suggest heart healthy lifestyle changes. Yet mom's primary care physician never recommended she see a neurologist or seek other specialized care, even when her symptoms had progressed into the middle stages. I have learned from talking to hundred of other families that this is all too common, and it needs to change. Early diagnosis effects not only the course of care for your loved one, it opens up resources that will help the entire family.
What if, armed with an early diagnosis, we could have had a discussion with a case worker who was willing to be painfully but compassionately honest with us about the progression of the disease and the likelihood that mom would need to move into memory care; that it might become impossible for us to care for mom at home. I wonder how mom and dad might have planned differently. For instance, they might have decided to sell the house years earlier and move into assisted living, in a place that they chose together, with lot's of care options in place and access to memory care if needed. I regret that mom felt so scared and abandoned when we moved her to memory care, and I wish that she'd been able to have a voice in the plan for her own care.
What if we lived in a culture that viewed the disease differently, to the extent that we would have let our closest family and friends know about mom's condition years earlier? This item on my "what if list" would have made huge difference for my dad's physical and mental health. Being a primary family caregiver is the most stressful job imaginable, and most go it alone. Isolation is the norm, and can be accompanied by severe depression, illness, injury and even death. Our nearest and dearest would have been there for us if we had told them. Visits, phone call, emails, caregiving breaks for dad, errands run, dinners shared - all critical lifelines that would have been game changers for us.
What if I had been a braver, wiser and better son? What if I, with my sister and brother, had risked some tough confrontations with mom and dad, and insisted that they get mom diagnosed. It would not have been easy, might have been downright ugly, but so many things would have been better if we had. This one haunts me of course, but I give myself some grace because we all did the very best we could with the information available to us at the time. But it also drives me, every day, to increase awareness and open dialogue about the disease, and to build a product that can help everyone who will one day walk in our shoes.
And finally, what if this little blog post finds it's way to someone who is where we were years ago, and they are inspired to get their loved one diagnosed, and seek out resources, early in the game? I hope that it does, and that it makes a difference.
If you have a loved one with later stage Alzheimer's or another form of dementia, chances are paid caregivers are now a part of your life -- and more importantly, hers. Getting to know "mom" is a critical part of rendering the best care, but how can your paid care providers do that when she can no longer speak for herself? It's a challenge you'll face many times since she'll have more than one person caring for her as the disease progresses, and they all NEED to know who she is to take the best care of her.
Enter The Memory Kit. The easiest way to collect, save and share her story. You've never met my mom, but you can get to know her through her Memory Kit. Here's her Memory Kit video. Allow me to introduce you to Molly Gray.
Like all good startups, The Memory Kit founders and team worked together in our early days to establish the Company's core values, a set of principles we were all committed to, that would help us guide and grow the enterprise. While I believe in these values and remain committed to them, I have also come to realize that they are not a whole lot different from those expressed by other companies who's founders and team are people of principle and integrity. They are table stakes.
As The Memory Kit embarked upon a bold mission to transform the quality of life and quality of care for families confronting Alzheimer's and dementia, we found ourselves in uncharted waters, creating new technology and revolutionary products. I soon discovered that we needed a new set of values that were unique to the community we served, that would not just serve as guide rails, but also a springboard that would propel us, drive us, and inspire us every day. After much consideration, conversation, and soul-searching, we developed this new set of values: awareness, prevention, advocacy, compassion, and beauty. I have shared them here, along with an explanation for each, and welcome input and comments from any who would care to share. We are building The Memory Kit for you, so we'd like to know what you think.
Today I ran across some words my mother wrote in 2004: the last paragraph of the Christmas letter from that year, signed off as always with words of love and encouragement from Molly. The last thought is particularly profound as it was written by someone who would lose her life to Alzheimer's disease: "....write what you remember---before you forget".
My sister Amy found the letter as we were packing up things in the house in the Hollywood Hills, and we wondered out loud if she already knew; and if not then, when did she begin to realize that something was wrong? We'll never know, but what we do know for sure is that because of the fear and stigma surrounding Alzheimer's, she (we) waited far too long to tackle the problem head on; to see a neurologist, get the diagnosis, and take every possible proactive step as early as possible.
Would it have made a difference? In terms of the progression of the disease, no. What we know about Alzheimer's is that it cannot be cured, and the drugs available today do very little. But in terms of her comfort, and the quality of life for both her and my dad, it would have made a big difference. We would have planned better, spent more time together, been kinder and gentler to one another, and celebrated more. Plus, no one attacked a big problem like Molly Gray, and if she had been diagnosed early, I know that mom would have thrown herself into creating a memoir that we would all would cherish today.
About once a week someone here at the Atlanta Tech Village approaches me with a questioning look in their eyes - they know me as "that Alzheimer's guy" because I am one of the co-founders of The Memory Kit, and most know I lost my mom to the disease. They don't always want advice, just someone to talk to who's been there, and who understands what they're going through. But often their family is stuck where we were for too long: aware that something profond was happening, suspecting Alzheimer's, but not confronting it head on. If asked, I always offer the same advice: get proactive now. Early symptoms? Get to a neurologist and get diagnosed as soon as possible. You'll find out out if it's Alzheimer's or another form of dementia, or another condition with similar symptoms. You have absolutely nothing to gain and everything to lose by delaying the process. If you're a child with a parent (or siblings) trapped in place of fear or denial you may have to push, to be the squeaky wheel. It might be hard, and it might take some time to get everyone on the same page, but it will be well worth it, I promise.
For the record, as for me and how I handled things, I feel like I failed for the most part. I often wonder, would I have heeded the counsel I have given to others? I like to think so, but Alzheimer's is a disease surrounded with fear and stigma, and it can really throw a monkey wrench into family dynamics (as if they aren't already complicated enough!). If you have a loved one with early, or not-so-early, symptoms I encourage you to make it your New Year's resolution to push hard to get them diagnosed, and to seek out the information and resources and support you need.
For you and your family, I wish you a year filled with special moments together. And along the way take Molly's advice: "....write what you remember-----before you forget".
In 2015 I ran the LA Marathon to raise money in honor of my mom, Molly Gray. At the time she was fighting her battle with Alzheimer's (a battle no one wins) and in my heart I was running for her. Many dear friends donated, and we raised a lot of money for the cause.
This year I'm doing the Walk4Alz vs. running a marathon due to a knee injury, but the big change isn't my mode, it's my motive: I'm not walking for my mother; I'm walking for you. Because if you have a loved one with Alzheimer's in the greater LA area, you need the information, resources and support that only Alzheimer's Greater Los Angeles can provide. And if your life hasn't been affected by Alzheimer's there is a very good chance that it will be - with a new case diagnosed every 66 seconds the chances. I'm raising money so that if this terrible disease touches your life in the future, you'll be able to rely on this incredible organization the way our family did. They were there for us, every step of the way.
So join our team and make a donation, spread the word and by all means come walk with us in Century City on Sunday, November 6, 2016.
One of the greatest compliments a user or client can pay your product is to powerfully adapt it to a use case that you had not considered, and that is exactly what the innovative team at the Summer House at Villa Gardens has done with The Memory Kit. We created our app to enable families, friends and caregivers to connect by telling the story of their loved one's life -- to collect, save and share their best memories together. Not long after we released the product I was contacted by Katherine Kennedy, manager of the Summer House, who asked, "Couldn't we use The Memory Kit for our entire memory care community?"
"How would that work?" Her vision was that she and her team could use The Memory Kit to capture moments throughout the day, and invite the families of the residents, and their caregivers, to connect with their loved one’s daily lives at the Summer House. To say we thought it was a great idea is an understatement, and we immediately created a customized Memory Kit for the Summer House.
Katherine and her team went to work, and with the leadership and support of Front Porch Executive Director Dmitry Estrin, set up a special family night to launch the Summer House Community Memory Kit program. Attendance was great, and everyone showed up with their iPhones and iPads, eager to learn, explore, and set up their memory kits. Here are some of the things we heard when we finished our walk-through and demo:
“This is the best thing I have ever seen to help our community.”
- Ed, not-easy-to-impress techie and Vietnam veteran.
“I have family members that live out of state and this is a great way to let them see how mom is doing day to day. I also have a brother who lives here, but he doesn’t visit because it’s too hard for him. Maybe being able to sit with mom and look at her Memory Kit will make it possible for him to visit.”
-Wendy, schoolteacher and self-professed non-techie.
“The Memory Kit makes it so easy for caregivers to learn about the residents in their care, and to connect with them as individuals.”
-Rebecca, consultant to the senior care world.
Today, the Summer House team updates their Memory Kit throughout each day, and loved ones both near and far away can "drop in" and see what's happening via the app, It keeps them feeling close and in touch, and also encourages more visits!
Dmitry, Katherine and their team are a part of an organization that is committed to using the best technologies to improve the quality of life for their residents, and to support their families. Kudos to the Front Porch for being on the front line of innovation, and for inviting us to be a part of it!
Contributing authors: Amy Gray, Jeff Gray, John Gray, Susan Soper and Katherine Kennedy
Write something about yourself. No need to be fancy, just an overview.
|Where Memories Live|