Dad continues to decline, but he is one tough guy. His hospice nurse thought he had “less than a week” over a week ago and he still continues to get up and out of bed at least once a day — until today. But it’s early.
My sister, brother and I are taking shifts and doing our best to make sure he’s comfortable and cared for. We are well supported with an almost daily hospice nurse visit and 24/7 phone support.
Dad is very weak and tired, but says he is not in pain.
It seems he has one foot in the afterlife and he goes back and forth between both worlds.
We are taking it day by day and sometimes hour by hour, with our father in the lead.
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.
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.
There are more than 15 million dementia caregivers in this country and every single one can benefit from support of some kind. Meals, errands, respite, support groups, and hugs to name a few.
Alzheimer’s support groups can help a person feel like they’re not alone. When I was in a group and heard a participant share frustrations of caring for her loved one and her secret hope for a swift end, I knew I was in the right place. I also knew that I’d one day want to give back by leading a group of my own — and that time has come.
But first, let me tell you what happened.
I began the application process last year with the local Alzheimer’s Chapter. After many calls, a fair amount of paperwork, an interview and a background check, I was thrilled to be “hired” for this volunteer position! And then it went nowhere. I heard this chapter was “restructuring” which was fine. I could wait. But I imagined my eager and ready application languishing in a drawer and becoming a forgotten file.
Then a few months later out of the blue, a friend contacted me to ask if I was interested in taking over a local Alzheimer’s Support Group that was in need of a new facilitator. This friend and I had not been in touch in awhile, she had no idea I was pursuing this, and said she just “thought of me” when the spot became available.
Amazing how things work out. Of course I said yes.
I co-facilitated my first Group in June, my mother vanished on July 6th, and ten days later I was leading my second Group. Reealy bad timing. I had nothing to give, but what was I to do? I committed and wanted to follow through. So I went, and shared, and cried. People cried with me, probably because they could see their lives in my story — they have lost or are losing their loved one with dementia too and it’s okay to be sad. It’s okay to cry.
Support goes both ways.
My little group meets at the Winchester Medical Center, on the 3rd Tuesday of the month from 7:30 — 9:00pm. We talk about everything related to having a loved one with dementia. We laugh, we cry, we listen and support. All are welcome.
There is most likely some type of support for whatever you are going through. Whether it be a group, a counselor, pastor, or a friend — I encourage you to reach out and find support.
CLICK HERE to locate an Alzheimer’s Support Group near you. Or go to ElderCare.gov for additional resources and to find your local Area Agency on Aging which can direct you to a support group for your specific needs.
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
Teaching a child not to step on a caterpillar is as valuable to the child as it is to the caterpillar. ~ Bradley Millar
My mother loves all animals. As I watched my mother and father take in strays, rescue and care for injured or abandoned wildlife, and stop to assist various creatures off the roads, I saw kindness and compassion — this might be their greatest gift to me.
We once herded a mother duck and her ducklings, (to include stopping traffic), three blocks to the nearby creek after she apparently lost her way.
Mom loves birds too, Robins especially. There was a Robin who built a nest over the downspout on the house every year, and during the sweltering months of summer, mom would set out water for that “poor panting momma.”
Now my children are animal lovers. They were raised to watch bugs and spiders rather than kill them, and to know they are the stewards of all creatures — especially when help is needed.
When I saw this video, I immediately thought of my mom and how much she would enjoy this bird program for people with dementia.
There’s a large bird feeder right outside the picture window where Mom spends a lot of her time. Here she is filling the feeder with bird seed.
Finally, I couldn’t write about my mother’s love of animals and birds without including this heart-warming video of people coming together to make sure a mother duck and her ducklings made it safely to water. Given the opportunity, my mother would no doubt be one of these helpers.
“Until one has loved an animal, a part of one’s soul remains unawakened.” ~ Anatole France
My brother-in-law shared this inspirational video of Pat Summitt, who recently retired as Head Coach of the Tennessee Lady Vols, due to her diagnosis of early-onset Alzheimer’s disease. Now I’m not a basketball fan, and I don’t know much about Pat Summit other than what I’ve just learned, but I like her.
As you’ll see in the video, anyone who has the words “It Is What It Is” hung over their fireplace must be a straightforward, non-complaining, acceptor of reality kind of person.
I want to be like that. I strive to be like that.
“It Is What It Is” is a common saying with a big message. Simply put, I think it means “I accept reality.” Accepting reality can mean anything from accepting the traffic jam you’re in to accepting a job lay-off, or even accepting an Alzheimer’s diagnosis like Pat Summitt. But I want to take it a step further and say “It Is What It Is” can also mean agreeing with reality. Agreeing with and embracing reality, and even loving reality — or “Loving What Is” as Byron Katie, one of my favorite authors writes about when she says: “I am a lover of what is, not because I’m a spiritual person, but because it hurts when I argue with reality.”
The reality is life is hard, things don’t always go our way, and people get sick and die every day. Arguing with reality adds more pain to an already difficult circumstance. Accepting, embracing, and even loving reality leads to a path of less suffering and more peace.
It is what it is.
I have an art print that says this on my wall at home. It spoke to me while I was shopping a couple of months ago, I impulsively bought it, and it’s been tucked away and not hung up ever since. After learning about Pat Summitt, her brave acceptance of her Alzheimer’s disease, and that she lives by these words, I finally hung it up today. It will be my daily reminder to accept and LOVE WHAT IS — because what else is there?
I stumbled across this short video of a dear couple in Canada who are living with early-onset dementia. The husband was diagnosed in 2008, and his wife is his caregiver. The wife’s gentle spirit is so beautiful. And the two of them together make me feel like I’m witnessing love of the highest order.