If someone you love has Alzheimer's, grief is a part of your life. In this video Rebecca Axline, Supervisory Clinical Social Worker at Houston Methodist Neurological Institute / The Nantz National Alzheimer Center speaks candidly and compassionately about coping with grief by acknowledging it and honoring it.
I lost my mother to Alzheimer's in 2015. Looking back on that long and painful journey, which many call "the long goodbye", I regret that we didn't make better decisions at the earliest stages. Fear, unnecessary shame and stigma, and lack of information all contributed to a process that - above all else - deprived mom of a voice in her care as the disease progressed.
How did we make the mistakes we did in an age where any information we needed resided in the cell phones in our pockets, instantly accessible anywhere, anytime? I believe the answer is that the way we talk about the disease still perpetuates every negative notion we have about it. To put a twist on the famous Steve Jobs quote, we need to "talk differently".
To do our part, we've invited a panel of industry leaders and experts to share their advice, insight and encouragement on virtually every aspect of the disease. Together, we're Turning on The Dialogue about Alzheimer's and dementia.
Our goals are straight forward and bold: We hope to inspire earlier detection and diagnosis, better brain (and body) health, better quality of life, better quality of care, and a wholesale change in the way people with the disease think about themselves.
Dean and Ayesha talk to us about the importance of restorative sleep, one of our best tools for preventing Alzheimer's and dementia. It is also essential to maintaining our cognitive health as we age.
Dr. Ayesha and Dr. Dean Sherzai recently met with us to talk about Alzheimer's and dementia. They generously shared their insights on a wide range of topics including:
We're excited to bring you the results of over two years hard work: The Memory Kit hardbound Companion Book and CareCard We have worked with families, care providers, non-profits, doctors, social workers and memory care managers to create a product that will improve the quality of life and quality of care for individuals with Alzheimer's and dementia, and to provide peace of mind for their families. From our team to your family, with love. #endalz #love
Today is the second anniversary of the day my wife, lover, and best friend left this earth and became a guardian angel. That angel is watching over me, our children, and grandchildren. I don’t know if there is life after death, but I do know the human spirit lives on. It’s with me and all those whose lives she touched in her time here on earth. Her death from the devastation of Alzheimer’s disease and the toll it can take on the patient, the family, and the caregivers is haunting. The idea of the Memory Kit started even prior to her death. We wanted to preserve her memory. Yet, from the basic idea to its development, today has seen many twists and turns. We have many goals that include, giving a person with Alzheimer’s a voice when they can no longer speak. Giving caregivers knowledge that will aid them in understanding this person who is so vulnerable. Then, to keep distant family members in touch with their loved one. Finally to generate donations for Alzheimer’s support organizations. I know you can write books about this, but in these few words, I hope to honor the loss of Molly Ann Gray, wife, mother, grandmother, and devoted humanitarian. Love You!
Co-Founder of The Memory Kit.
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.
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If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.