When I read or hear news confirming the possibility of preventing or delaying Alzheimer’s I am renewed with hope! The idea that my future can be influenced by the choices I make today is pretty powerful and it helps me stay the course of being an Alzheimer’s Warrior.
That’s why I love this recent article in the Minneapolis Star Tribune titled “10 Ways To Keep Your Brain Sharp.” It offers clear and simple ways to love your brain, with exercise being the top two. GET MOVING is #1 and says, “If you do only one thing to keep your brain young, exercise.” This is my motivation — nothing has given me a better reason to lace up and break a sweat. PUMP IRON is #2 on the list. I don’t pump iron. Yet.
The bonus? A healthy brain is just ONE of the benefits of following this list.
All that we behold is full of blessings. ~ William Wordsworth
Yesterdays post about Alzheimer’s disease killing my mom was honest. It wasn’t meant to be anything other than that. I have experienced many emotions throughout the course of my mom’s disease. I’ve been sad, frustrated, joyful, embarrassed, protective, impatient, scared and yes angry. But I’ve also been grateful. And of all the emotional ups and downs this disease brings — gratefulness is my gift and comfort to myself.
My mother is still on this earth, she is in good hands, and I get to tell her everything in my heart over and over again.
Yes, I am grateful for Alzheimer’s disease.
Because of Alzheimer’s . . . .
My mom is free from the worries of the world and is generally happy.
I am closer with my parents because I am more involved in their lives.
I am also closer with my brother and sister who are my partners on this journey.
I have a pretty good idea of how and when my mother will die — it’s a gift in disguise.
I appreciate and treasure every moment I have with my mom, and those I love.
I know how and why to strive for fitness and health — including brain health.
I’m healthier than I’ve ever been.
I see the fragility of life, and I try not to take things for granted.
I’m trying to live with intention and mindfulness.
I have a good reason to run!
We can only be said to be alive in those moments when our hearts are
conscious of our treasures.~ Thornton Wilder
It’s called “Creating Moments of Joy” by Jolene Brackey and it has completely changed the way I communicate with my mom.
I love this book so much, I think it should be required reading for anyone who interacts with an Alzheimer’s sufferer.
It’s a book about meeting the person with Alzheimer’s WHERE THEY ARE AT in order to avoid emotional pain and confusion.
It’s also an instruction book on how to tell little white lies.
For example, when my mom asks “When is Gary coming to get me?” A not so good answer might be, “He isn’t coming to get you because you live here now.” This answer is frightening and confusing. The better answer might be, “Won’t you stay for dinner and Gary can get you later? I just love spending time with you!”
This works better because THERE IS NO SHORT TERM MEMORY! Zero! Zip! So the only goal of the caregiver is to help the person with Alzheimer’s feel comfortable and safe — IN THAT MOMENT.
It’s okay to lie when it’s the kindest thing to do.
My mom will eventually think she is three years old and will start asking for her mom — which breaks my heart : ( But can you imagine my mom’s reaction if a caregiver replies, “Ruth, your mom died a long time ago.” What if my mom asks this question every day? Or ten times a day?! A better answer might be, “Your mom is at the grocery store and she’ll be back soon.” Comforting relief in that moment!
While this may seem almost cruel. IT’S NOT. We are joining them in their reality and coming up with feasible explanations in order to avoid emotional stress. It’s a moment in time that will be gone in 20 seconds, and all that will be left is the feelings that were created. Do we want good feelings or bad? Comfort or fear?
The author covers many other topics to help create moments of joy for the Alzheimer’s sufferer, including giving compliments. Saying you’re so smart, creative, or strong for example, are wonderful boosts. My mom beamed when I told her how beautiful she was.
And she loved hearing me say, “So many people love you!” Now, that was the truth.
Go to Creating Moments of Joy to order this book and learn more about communicating with your loved one and how to “discover their greatness.”
I’ve often said that being a caregiver for someone with Alzheimer’s disease is the hardest job there is because it’s a 24/7 thankless, monotonous, mind numbing job.
It’s similar to taking care of a child. Except this child has zero short-term memory, limited common sense and problem solving skills and a quickly diminishing capacity to communicate. Combined with mood swings and an obstinate disposition, (which my mother so far — knock wood — doesn’t have), and you have someone who will, over time, suck the life right out of you.
My mother told us again and again last week how we needed to move a large radio from one room to another. She was passionate in her plea to convince us why this needed to happen — and none of it made sense. I heard her say this over and over again. Now imagine hearing it a hundred times for a year. It’s mental torture. And very stressful!
Getting my mom dressed and undressed, bathing her, getting her to take her medication and even buckling her seat belt became jobs far bigger than they needed to be. Many things are difficult and confusing for my mom, which means nothing is easy for the caregiver.
Patience with clenched teeth becomes the norm.
In a recent Huffington Post article titled “How to Best Help Alzheimer’s Caregivers? Teach Them Mindfulness,” Licensed Clinical Social Worker Marguerite Manteau-Rao expands on the difficulty of being a caregiver for someone with Alzheimer’s disease and recommends practicing mindfulness as a way to combat the stress. Mindfulness is described as the practice of “the cultivation of intentional moment-to-moment awareness, without judgment”, and has been found to produce significant results in terms of stress reduction.
Mindfulness practice is especially relevant to the predicament of dementia caregiving. It can give caregivers the inner resources to sustain themselves emotionally and physically over the long haul and is a tool they can always fall back on moment to moment, regardless of the intensity of the care relationship. Mindfulness can also help guard against the occurrence of depression.
Being mindful and in the moment with my mom was a blessing for me. But this was fairly simple because I was with her for a short time. I can imagine the difficulty in remaining mindful day after day, year after year.
What would you do if you knew you had twenty years to live? How would you
live the rest of your life?
I recently realized twenty years could be all the time I have left to live with a sound mind. Both my mother and grandmother were diagnosed with Alzheimer’s when they were about 70. My mom was 68. I am 50 — you do the math.
If the Alzheimer’s clock is ticking in my brain and the timer goes off in 20 years or so, I’ll still be alive but . . . . what kind of life will I have? I’m not saying I will get Alzheimer’s in 20 years, I’m saying the odds are not in my favor.
What would you do if Alzheimer’s was staring you down through the barrel of a gun?
Would you wait for the trigger to be pulled? Or would you start running?
After being dazed for a bit by my realization — I started running — figuratively and literally. I began Racing Alzheimer’s by learning everything I could about healthy living and Alzheimer’s prevention and then I started doing one of the best things I could do for my brain — I began exercising. And yes, running.
I learned that it might be possible to prevent Alzheimer’s disease — or at least delay it until I’m 90 when I won’t care so much. But while I’m focused on prevention I also want to talk about intention — as in living with intention, and being present and grateful for every minute I have, whether the gun goes off or not. I want my eyes and my heart to be wide open and I want to say YES more and NO when I should. I want to be mindful and present in my life because twenty years can go by quickly and I don’t want to miss a thing. I mean, I thought I was paying attention during the last twenty years, and they still went by in about 20 seconds.
“How will you live the rest of your life?”
It sounds a bit cliche, but the “Bucket List” is an invaluable tool for living with intention. I didn’t have one before, but I do now because it’s an effective way to laser in on those things I’ve always thought about doing but sort of shrugged off. It’s kind of like my 20 year plan. I’ve included some things I’ve already done because they were awesome and they would have been on my list anyway. (Plus, I like having some things crossed off already.) The most important item is at the top of my list and everything else is random.
Here’s to PREVENTION and INTENTION. And to crossing things off.
Play with my grandchildren
Plan/Attend family reunion See the Grand Canyon
Become a Master Gardener Be a Alzheimer’s Support Group Facilitator
Volunteer at a wild life refuge
Volunteer at a local Hospice Meet Jane Goodall
Go on a Scandinavian cruise Attend Tom Petty Concert
Climb Machu Picchu
Traverse the Rain Forest canopy
Hike in Nepal Go to New York City See Broadway Show
Go to major concert with children
Help build a home or school Write a Book and/or Blog Create a website Learn to speak Spanish
Take a photography class
Hold a “Free Hugs” sign in a crowd See “A Prairie Home Companion” Go to Italy
Attend Marriage Retreat with husband
Write “Letters to my Children” Run a 5K Attend U2 Concert
Create art to display Participate in Alzheimer’s Research
Participate in the D.C. “Walk to end Alzheimer’s”
See Saturday Night LIVE! Run a 10K
Meet Oprah Run Twin Cities 10 Miler
Do 5 (real) push-ups
Take a writing class Attend Van Halen Concert (Really) learn yoga Go Snorkeling
Ice Skate in Central Park
Drive across America
Run around Lakes Nokomis, Harriet, Calhoun
Go to MN State Fair Attend Meditation Retreat
Participate in Protest or March
Bike Minneapolis “Grand Round”