My grandmother visited me for a week in 1996 when she had moderate dementia. To ease the burden of having one caregiver, my grandma traveled between her three children’s homes and would stay for up to four months at a time at each place. My home was a stop-over one year as she went from my uncle’s home to my mother’s. I was glad to have her with me, and in my hurried life with little ones, it was nice to slow down and be with grandma in her world for just a bit.
I adored my grandmother who died in 1999 with advanced dementia. But do you know what I remember the most from her visit? I remember her asking the same questions over and over, and me repeating the same answers over and over. I wasn’t prepared. She didn’t know where she was or who I was. And whoever I was, I had some of her things that I needed to give back to her! Talk about a crash course in dementia. To go from the grandma who used to love on me and call me her “little dumpling” to not knowing me at all was tough — shocking even.
I didn’t know at the time that my dear grandmother would be practice for what lay ahead.
Fast forward to 2005. I am with my mother in the kitchen and she doesn’t know what to do or how to help. She is lost and seems to find comfort staying at the sink and washing dishes. She is clearly overwhelmed, and this is the moment when I knew. She is 68 and slipping away so incrementally it’s almost impossible to see — but I see it here in her face, at the sink in the kitchen.
In 2008 mom can no longer pay bills or make a phone call, and caring for her home has slipped through her fingers like the hair she no longer combs. Eventually, the names of mom’s friends, children, grandchildren, and even her own name, are gone. Mom could hardly communicate at the end, long after she lost the ability to do most everything else.
Mom died this year at the age of 75. Her Death Certificate lists “Alzheimer’s Dementia” as her cause of death, which I’m grateful for in this under-reported disease.
I walk for those who are already gone. I walk for the more than 5 million Americans who don’t know who they are or who you are, and for their families who love them. I walk for the 15 million caregivers in this country who are too overwhelmed and exhausted to walk. I walk for the billions of dollars needed to make the National Alzheimer’s Plan an ACTION plan. I walk for my children, and my future grandchildren. I walk for my grandmother, my mom, and for me.
I walk to be seen and heard and I walk because I HOPE.
My mother was born on September 11th, 1937. And for most of her life, it was a beautiful day for a birthday.
You know how it’s easier to remember events that have an emotional attachment to them? This is called explicit memory and this “emotional memory” seems especially evident in people who suffer from dementia — or maybe it’s just more noticeable, because most everything else is forgotten.
For example, my parents witnessed a tornado barrel through my mom’s hometown in 2010. That event had such an emotional impact on my mother, that she talked about it for a couple of years afterwards to anyone who would listen.
Similarly, you probably remember where you were when you learned that planes had hit the World Trade Center. I was in my home, and when the first building went down, I was on my knees. Like so many, this day and these images are burned in our memories to stay.
Mom remembered this day too and she knew that her happy day was also a sad day. With teary-eyes and her hand over her mouth, mom felt the sadness and knew that her day didn’t belong to just her anymore. She couldn’t articulate specifics, but she didn’t forget the enormity of the day, even as her Alzheimer’s progressed.
Emotional memories stay long after other memories go.
We slow down on September 11th to remember and pay tribute to the lives lost on this tragic day in 2001. We will never forget. But on this day that was once an ordinary autumn day with birthdays and falling leaves, I will also honor my mother by finding the happy, and by remembering all that is good in the world. My mother would like that.
When I began Racing Alzheimer’s, my intent was to share the latest research on how to be healthy so that you and I could hopefully avoid or delay dementia down the road.
I haven’t been very good at this.
With my mother moving into late stage dementia, this blog became more about racing her Alzheimer’s by helping her and being with her as much as I could. Still, as I focused on my mom, I didn’t lose sight of the need to be healthy. My “prevention intention” was never far away as I watched the progression of this disease in my mom. Talk about motivation.
While there are no guarantees or proven ways to prevent dementia, there is nothing to lose and so much to gain for trying. There are a number of ways to keep our brains healthy that are supported by solid research — and exercise is one.
So I’ve been “running.”
If you’ve followed my running posts you’ll know I am not a runner. Uh, because running is hard? Truth is, all exercise is hard for me — I just don’t like it. But of everything I’ve tried, I enjoy running the most which is to say I hardly enjoy it at all. It’s tolerable. I’m not very good at it which is why I’ve been running so slowly it can hardly be called “running.” Oxygen deprived lumbering is a better description.
So why do it? Because study after study suggests exercise as an important way to prevent Alzheimer’s disease. One Mayo Clinic study found:
Older adults who regularly engaged in moderate exercise five or six times a week reduced their risk of mild cognitive impairment by 32 percent compared with more sedentary people. Those who began exercising at midlife saw a 39 percent reduced risk of mild cognitive impairment.
Mayo Clinic goes on to say, “It’s not clear how exercise protects the brain from Alzheimer’s, but research indicates several possibilities, including:” 1) increased brain volume, 2) improvement in brain connections, and 3) improved blood vessel health. In addition, Harvard Professor John Ratey, M.D. says exercise is “Miracle-Gro for the brain” and the “single most powerful tool you have to optimize your brain function.”
It’s kind of hard to say no to that.
I’ve been lumbering and training for a 10 mile race in October. The Twin Cities 10 Mile is something I’ve wanted to do since I started lumbering in 2011. It’s by lottery and I wasn’t selected last year. So you can imagine my surprise when, barely able to run 2 miles, I found out I got in this year! Yay!!? After I settled down and let go of my fear, determination set in — and I started training.
I’m up to 8 miles now and my knees would like me to stop.
As grueling as the training has been, I’m thrilled to be running this race in my hometown, in my 50th year — the year my mother succumbed to Alzheimer’s disease. I’ll run for my mom, and for me and for all my aging brain cells. My son will be running the Twin Cities Marathon at the same time — 16.2 miles farther than me, and I’d like to think I can finish before him.
I’ll share other ways I’m Racing Alzheimer’s down the road, but for now, it’s all about the lumbering, and my knees, and my brain cells, while b r e a t h i n g, and taking one step at a time.
The strangest thing about the death of my mother is the vanishing. That a person can be on this earth one minute and gone the next, seems like a cruel magic trick that I’m still trying to figure out. As I reflect on her disappearance, I realize the slight of hand happened years ago and the vanishing was just the grand finale.
Dementia is a terminal brain disease.
I knew this but I didn’t know it. Terminal is just a word I used to add weight and truth to mom’s disease because you’d be surprised at how many people don’t know this. So I said it to help raise awareness and educate, and to help me say out loud in a euphemistic way — my mother is dying.
I thought I was prepared, even ready for my mother’s death. But it was the concept of her death I was ready for, not the real thing. In the beginning, “has dementia, will die” was loud and clear in my subconscious, then towards the end my concept was that death would be a kindness that couldn’t come soon enough.
But vanishing from the face of the earth?
It may have helped if I had replaced the word die with vanish and had been saying things like “my mother is vanishing from dementia,” or “my mother is receiving hospice care and could vanish in three to six months.”
A friend warned me about this. She said “you may think you’re ready, but when your mom dies it will feel like you’ve been hit by a truck.” I believed her, but “hit by a truck” was another abstract concept. Another friend said the death of a parent is a “ground-shifting sadness.” This rings true as I try to find my footing on this new and shaky ground.
My mother vanished last month.
I’m sad, but I’ll be okay — I’m just a little surprised at the size of the truck.
It’s been a very long two weeks, but I am back home in Virginia and wanted to post something for friends and family since my mother’s passing on July 6th.
The service, mom’s “Celebration of Life” was a beautiful tribute to a life well lived. There were flowers and hymns, prayers and poems, a slideshow, scripture, and two solos with guitar by my mom’s Musical Therapist who had been singing for her since April.
We took care to make mom’s service and reception her own. We had blue linens, bouquets, and big blue hydrangea’s to honor her favorite color. We had The Carpenters, Barbara Streisand, and Neil Diamond to honor her favorite songs. We also included “The Animal Prayer” by Albert Schweitzer in her service to honor her love of animals.
I must say — mom’s service was beautiful.
It should also be noted that the people in my parent’s church came together as a supportive and hard working community to help make my mother’s service and reception successful and memorable — a huge thank you goes out to Living Spirit United Methodist Church.
With my brother and sister’s blessing, I gave the “Family Remembrance” and said out loud who my mother was, which I felt was important. But even as I say this, I’m sure I didn’t capture all that she was. And if you’re reading this and are anticipating the loss of a loved one, might I suggest you start thinking about what you want to say now and begin writing some things down? Because it’s hard enough to write about a loved one who’s gone, but even harder when in the chaotic midst of funeral planning.
So I cheated. I took something I wrote on my blog last year titled “Mom: A Brief Biography” and I tweaked it a bit. It was a relief having something in hand, but if I could re-wind the clock, I would have written a remembrance for my mom a year ago when there was more time to get it right. But hindsight is like that, almost everything is like that. We live, we learn.
But still, I don’t think I could have ever gotten it “right.” I mean, what words would I use to convey all that my mother was? How would I have described her? I couldn’t, I didn’t, so this will have to do.
A REMEMBRANCE ~ by Joanne Leonardis, Ruth’s daughter
My mother, Ruth Joanne Hall was born 1937 in Wadena, Minnesota. She was the oldest of three children and in many ways had an idyllic childhood — she was a Girl Scout, had a paper route, played the piano, sang in the church choir and yes, she even wore bobby socks and poodle skirts.
She graduated from high school in 1955, then moved to Minneapolis to attend the Minnesota School of Business and receive her secretarial degree. She learned shorthand, dictation and other “cutting edge” office duties and then worked at IBM for five years where she was like a “Mad Men” secretary with cat-eye glasses.
Mom met my father during this time, they married in 1960 and my sister Marilyn soon came along in 1962. I followed in less than a year, and my brother John came three years later. Mom stayed home with her children, but her secretary training would prove beneficial as she ran our household like a business and balanced the checkbook down to the penny every month.
Our childhood was rich with activities like traveling throughout the country, camping, fishing, family bike rides, sledding and drive-in movies.
Later, with the three of us grown and mostly out of the house, mom went back to work. She had about 20 years or so to rediscover herself, travel, and spend time with her grandchildren before her Alzheimer’s diagnosis came around 2005 when she was just 68.
The long and slow descent into the fog of Alzheimer’s has been her journey for the last 8 or 9 years now. And we have all said a thousand good-byes during this time. In the beginning we said good-bye to simple remembering, like what we talked about yesterday, or how to make a meal. Then we said good-bye to things like getting a call just to say hello, birthday cards, and even knowing our names. Finally, we said good-bye to most everything that resembled our mom.
But this is not what we’ll remember. Instead of focusing on what Alzheimer’s took, we choose to remember what mom kept.
Mom kept her joy. She never once complained even though she knew what was happening to her. In the very beginning of her disease, I tentatively asked her – “do you know that you have what grandma had?” And she replied, “yes, but I can’t do anything about it, so I may as well be happy.”
Mom kept her friendliness. Strangers were friends she hadn’t met yet. This could be a bit awkward at times, but really, it was a great lesson – we are all here together, we are all friends.
Mom kept her sense of humor. She was playful and silly right up to the end.
Mom kept her love and tenderness. I can’t tell you how many people have shared that mom was “the best hugger.” That’s just what she did. She wasn’t afraid to reach out and touch people. My mother wasn’t afraid to love.
Mom lost just about everything, but she kept her heart. She may not have known your name, but her heart knew you, and her heart loved you.
Mom showed us that in the end, all that’s left, all that matters — is love.
Some things mom loved are:
Texas Blue Bonnets
The Mormon Tabernacle Choir
Picking raspberries off the vine
The color blue
Hanging clothes on the line
Walking to run her errands
Clouds in the sky
If you are so moved, memorials may be made to:
Alzheimer’s Research Center
640 Jackson Street
St. Paul, MN 55101
CLICK HERE to learn more about the Alzheimer’s Research Center.
*** Also, if you are so inclined to share this post, I ask that you copy the link that’s in your browser and paste it in the email you are sending out so the recipient will be directed to this website. Thank you. ~ Joanne
What I remember the most from my recent visit with my mother is how she looked. She has a look to her that’s difficult to describe, but which I’ll never forget. It’s a shuffling, stooped look combined with an ashen complexion and empty eyes that I can best describe in one word — GONE.
Does that sound awful? I don’t mean it to. Is there a better word to describe my mother? I’m sure there is, but I like this word right now. Gone baby, gone.
I suppose I could get sentimental and tell you how she’s here too. How she always says my name at some point during my week long visits. How she isn’t looking at me when she says it, but releases it like a butterfly to the wind for me to gently catch. And that she probably doesn’t know why she says it, but she does — because something remembers, and that means part of her is still here.
She’s here and she’s gone all at the same time, and I see one or the other depending on the moment, my perspective, and even my mood. She can be hard to find, and sometimes seeing my mother as gone is easier than finding her here.
* * * * * * * * * * *
Here’s a quick report from my mom’s hospice nurse yesterday:
They are still trying to move mom’s sleep cycle. She was previously sleeping from 7pm to about 3am, which is bad enough, but now she sleeps from 6pm to 1 to 3am, which isn’t good. Mom needs more help eating, and she looks like she’s lost more weight. (Weigh-in next week.) She is still walking, but is not as steady on her feet. These are the things we are watching — sleep, eating, weight, walking.
The good news is that mom appears comfortable and at ease. There is no distress in her face or demeanor and she is still able to smile and be happy. This is amazing to me and such a testament to the power of a positive spirit.
Out of respect for my mother, I will never post pictures of the “gone” woman that I described. She looks pretty good in her pictures, which is one of the reasons Alzheimer’s can be so invisible.
Many of you know my mom has advanced dementia, had a major seizure in April, and has been receiving hospice care ever since. Hospice has been trying to reduce her restlessness and bring more sleep and calm into mom’s life. It’s been a trying time during this hit or miss process of adjusting meds, and if you saw Dear Assisted Living Home, you’ll know it’s also been a frustrating time. That’s why three weeks ago, I decided to move my mom in with me where I could take care of her one on one along with Hospice services here.
And then I changed my mind. It was a decision based purely on emotion. A reaction to distress — my mom’s and my own.
When our daughter was five years old, she had something stuck in her throat that allowed her to breathe and talk but caused her to panic and pace the house in obvious distress. We tried everything to get it out including calling the doctor who said if she can breathe and talk, she’s probably fine. Her panicked pacing went on for about an hour, when she jumped up on our bed all flushed and bothered, stood there with arms outstretched and fists clenched, and yelled in desperation, “SOMEBODY DO SOMETHING!!!” I brought her to the ER, and four hours later, with my daughter asleep in my arms, the doctor said she probably got a toothbrush bristle stuck in her throat which seemed to have worked it’s way out.
“Somebody do something!” is said to this day in our home and it always makes us smile. But my point is, this is how I felt about my mom. She’s progressing quickly, she’s agitated, her caregivers are agitated and I jumped on the bed and yelled “SOMEBODY DO SOMETHING!!!” Mom needs her family, her daughter, we need to bring her home with us! We need to do something!
Since I left Minneapolis a month ago, mom has become completely incontinent of bowel and bladder. She is no longer able to feed herself, and is having more difficulty swallowing. Walking is the only activity mom can do on her own, but she’s losing this too and a wheelchair is in her near future.
The window to move mom came and went, and I missed it. Her dementia moved so slow the first eight years or so that I wasn’t prepared for her recent rapid decline. Mom needs total care now and to remain in familiar surroundings — she won’t be going anywhere. But we’ll be going to see her. My two children and I are traveling to MN soon because Jake will be working there this summer and we wanted to make a road trip out of it.