This weekend my family gathered together in Los Angeles for the annual Walk4Alz fundraiser, and just before it began my sister pulled a little memento out of her pocket: Mom's Sunrise name tag. Without knowing her history you might guess that Molly had worked at Sunrise, but in fact she lived the last year of her life there as a memory care resident.
The sight of her name tag reminded me of her caregivers, and the great job they did personalizing her care. Even though Mom had a very difficult time with verbal communication, they noticed right away that she loved to help out. She would often help clean up after meals, or assist other residents with activities and crafts. The caregivers spotted a fellow caregiver in Mom so they decided to make her feel like a part of the staff, and had a real Sunrise name tag made for her. She really liked it. Throughout her life Mom was an incredibly productive person and Alzheimer's stole that from her late in life. You could that when she was helping out with her name tag on she felt useful, and connected to her true self.
We created the Care Card to help care providers understand the unique needs and preferences of their clients or residents when they first meet them, and as they evolve. There is a tab for tips on "How to calm me down" for those times when things aren't going so well. On my Mom's I would have put "Give me a task or a chore to do." The Sunrise team got to know her as a person and kicked it up a notch. They made her a part of the team!
Jeff Gray | Founder & CEO
The Memory Kit
In a large group setting, such as at an adult day care, it can be difficult for caregivers to understand, remember, and cater to each person's individual wants and needs. Using the Care Card, families and caregivers will input the vital information that one needs to provide the best quality of care. Ranging from favorite foods and favorite music to things that upset them, it is now easier than ever to know a person on a personal level from the start.
When my Mom was battling Alzheimer's there was a moment when I realized that a person meeting for her for the first time would not be meeting the person that I knew and loved. The disease had simply taken too much.
It's heartbreaking for anyone caring for a loved one with Alzheimer's or dementia when the disease progresses to that point. As sad as it was to get to that place, I also realized that at some point it would have a profound impact on her care. Molly Gray was a delightfully, sometimes frustratingly, quirky person. So many little things could bother her, or make her happy. And Alzheimer's would amplify her reactions to them to the point where they weren't so "little" anymore. When we needed professional home care, and later memory care, our whole family worried about her comfort. We could could still understand her. We still "got" her. But how in the world could a stranger connect with her?
As it turned out our worries were not unfounded in many situations. Adult day care, home care, hospital stays and rehab centers were disasters.* We felt we couldn't leave Mom's side for a second, and we had to repeatedly educate the people caring for her about her personal preferences and sensitivities. It was frustrating for us, but mainly our hearts were breaking for Mom because she simply could not speak up for herself.
They say that "necessity is the mother of invention" but I think for The Memory Kit pain, frustration and compassion played the larger roles. Our goal in creating the Care Companion and Care Card was to make life more comfortable for people living with Alzheimer's/dementia, and to provide some peace of mind for their families. Both products are designed, with the help of experts, to enable your loved one's caregivers to get to know them and understand their needs when you're not there.
*Not every experience we had with care providers and healthcare professionals was bad. We made a change in Mom's primary care physician to a doctor who can accurately be called an angel, and the team at Sunrise in Beverly Hills was nothing short of amazing. They are a part of our family now.
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.
Care card Blog
If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.