Music and singing were always a part of mom’s life. And they continue to be a way we track the progression of the disease. It’s been a while since I posted some singing clips. Here are two short ones…plus a bonus reprise from the toilet! (Oh yeah, we sing there too!)
This little light of mine…
You are my sunshine…
A reprise from the toilet…
An Amazing Village Designed Just For People With Dementia
Centuries after Shakespeare wrote about King Lear’s symptoms, there’s still no perfect way to care for sufferers of dementia and Alzheimer’s. In the Netherlands, however, a radical idea is being tested: Self-contained “villages” where people with dementia shop, cook, and live together—safely.
See pictures and the full article:
I’ve been traveling the last three weeks. Traveling has this effect on me where I remember things that don’t come up in my day-to-day life. I remember words in different languages, I remember people I’d forgotten, I remember smells and foods from another time and place. Part of my love of travel is how it’s a key for a locked memory box that opens when I leave home.
Sometimes I don’t get a memory, instead I get a flash of something. It’s like someone holds a picture up to my face but pulls it away two seconds later, so I don’t get a chance to really focus on it. I get colors, shapes, cryptic familiarities. It’s a tease.
I used to spend a long time trying to figure out the flashes. Trying to see the flashes more completely and more clearly. When my mom got sick, the memory flashes scared me. I thought they were a sign that something was wrong with my memory, because the flashes are confusing. I couldn’t remember if the flash was a something I experienced or a movie I once saw. I couldn’t remember who was with me or where I was. I was scared it meant the things I once knew vividly were eroding to just flashes.
But what I figured out is my memory has always worked that way. Sometimes well developed, well kept memories. Sometimes just flashes. So if that’s true, then I think there may be another explanation. That the flashes aren’t eroded memories, but something more like crumbs.
After a particularly delicious meal, you notice the crumbs on your plate. And they don’t look like the meal, but they remind you of something delicious, something you wish you could have again and again. Like memory flashes. They are the crumbs of something special, permanently saved as colors or shapes or smells or two seconds of a picture. The flashes aren’t meant to be remembered in their entirety. They are meant to be reminders of times lived so fully and with such enjoyment, that a crumb of wonderful gets left behind.
Mostly I see this journey with my mom as one of loss and discovery–a process of winnowing down and of slowly leaving.
Until the times when it isn’t.
It amazes me that there is still an opportunity to be surprised. There are still things that give you hope, that fill up your heart, that give you the energy to stay in it.
My mom started feeding herself again.
By last summer someone was feeding her every meal. She didn’t have the coordination to take the spoon and feed herself from the plate. I remember the neurologist describing that as a sign of late stages. She said, “Things like using a fork to feed yourself is a very complicated thing. It requires several parts of your brain to work together to make it happen. We just take that for granted.” So when my mom stopped feeding herself, it seemed like another mile marker or the road of loss.
Our momsitter, who is one of the most amazing people I’ve ever met, said in late fall, “I’m going to start working with your mom to see if I can get her to feed herself.”
So she did. The kitchen switched her meals to small round bowls that mom could easily grip and hold. Our momsitter worked with her during each meal. She would prompt mom, give her cues, and nudge her hand toward her mouth. And slowly she began to feed herself again.
It is a journey of loss and discovery. It’s also a journey of surprises. I think about the loss. I think about discovering how to cope with what’s missing. I forget about the surprises. The surprises are really, really important, because the surprises are a vaccination of hope and joy that help you deal with the loss and the discovery.
We didn’t make Christmas cards this year so instead here is a very short video from our family wishing everyone reading this a very Merry Christmas.
I know about empathy. I teach about it in my courses. I know we are hardwired with mirror neurons to help us recognize what others are feeling. About a week ago I was at a restaurant with my brother’s family and my friend’s family. My friend has a gorgeous, bubbly one-year-old daughter named Rosie who giggles and lights up a room. The restaurant was so hot and my poor 3-month-old niece, Eliza, would get overheated and start to cry. Whenever Eliza cried, Rosie immediately looked at her and started to cry as well. When my brother would take Eliza out of earshot to comfort her, Rosie went right back to giggling and playing with her food. It happened three or four times. INCREDIBLE. Pure, undiluted empathy.
Through this journey with my mom, my brother and I have received countless gifts of empathy in the way of support from friends, family, caregivers, and strangers. In almost all cases it’s the same as Rosie, others reflect the hurt, the fear, the sadness, the anxiety, the worry of it all. Then we met Lisa and it was different.
We moved my mom to a new facility about two years ago and had to find new healthcare providers. Lisa was a physician’s assistant at the neurology center. Mid-thirties, short brown hair, glasses, white doctor’s coat, and ALL BUSINESS. I don’t think in two years I heard her laugh.
We took mom for her first appointment, where Lisa did the standard intake and history questions with my brother and me. Then she did an assessment of mom. When the neurologist does an assessment it’s a series of questions and problems, like telling time and remembering a string of words. It’s like the SAT of dementia…the higher you score the better off you are.
She said, “Your mom is late middle stage. This disease has about 10 years from start to finish. It doesn’t really matter how young you are when you get it. It’s still about 10 years. Here’s what to look for as signs she’s moved into late stage: loss of speech, loss of ability to hold a fork and feed herself, loss of balance and coordination. She’s probably going to fall and that’s how you will know. She’s at the point where the drugs aren’t going to help anymore. You need to think about what is coming next and plan for it.”
Just like that. No, “I know this must be hard,” or “This is so sad that it’s happening so young.” Nope, none of that. Lisa was all business. She was a big, foam index finger pointing out what was real and present. And the sterile, white walled doctor’s office seemed to squeeze in around us. It was tight and heavy and real. This was happening and it was happening fast and we needed a plan.
What I learned to appreciate about Lisa is that she was also mirroring something that was inside of me. Feelings of strength, resiliency, and compassionate responsibility. But they were harder to mirror because they were deep down inside of me. You had to go past all of the sadness and anxiety and stress to find them. Lisa helped call them forth. She was the most amazing gift we didn’t know we needed!
Every six months we’d steel ourselves for the trip to see Lisa. She’d give us the new reality and a list of what to look for next. She was the only one in our world that gave us the cold, hard truth and knew we were capable of hearing it. It was her greatest gift to us.
Two weeks ago I took my mom to the neurologist’s office. A young, thin, African-American woman sat down with us and started asking history questions and about mom’s medications. After about 5 minutes, I asked her if Lisa was out sick. She said, “No, Lisa left about a month ago, I’m just the temp till they find a replacement.” WHAT??? She left? I couldn’t believe it.
We continued with the appointment and when we were done, the woman said, “This has to be so hard for you. I’m so sorry. You just stay strong and keep doing what you’re doing.” I smiled and said thank you, and thought about how much I didn’t need that kind of empathy. I have plenty of friends and family for that. I needed Lisa’s empathy. It will be missed.
Halloween is such a “mom” holiday. There are costumes to assemble which require creativity, ingenuity, and an attention to detail. There are treats to buy, requiring the skill to estimate what is enough to go around without too much left over. There is the need to remain clearheaded about safety in the midst of all the fun and excitement. All perfectly tailored mom jobs that my mom always did for us, and in turn fostered our love for Halloween.
All these years later my brother and I still have a passion for Halloween. (I think he has 10 costumes for his newborn.)
One Halloween job my mom loved was passing out candy. She’d get the largest mixing bowl from the kitchen, fill it with candy, and sit on the front stoop. She talked to every kid who came to the door and asked about their costumes.
I was so happy to get this picture of her passing out candy in the nursing home this year. A little bit of assistance required, but loving it all the same I’m sure!