Book Review: And Every Morning The Way Home Gets Longer and Longer

And Every Morning The Way Home Gets Longer and Longer.  A novella by Fredrik Backman.

This novella is a treasure.  Just 76 index card sized pages which can be read in less than an hour.  But packed with deeply insightful, poignant and hauntingly beautiful messages that will touch the reader for a lifetime. Messages about fear, forgetting, life, love, loss, regrets, dementia, relationships, experiencing life, compassion, death, about being different (and that being ok) and about how life comes full circle in so many different ways.

This book moved me to tears. I read it once and then I read it again.  I flagged page after page and underlined passage after passage.  I read and re-read line after beautiful line. So many favorites.

Maybe this book touched me so much because in my career as a guardianship attorney I work with individuals affected by dementia every day – with clients who are afflicted with Alzheimer’s and with families who are trying to help their loved one who is experiencing dementia.  In the book Grandpa is struggling with how to explain to his beloved grandson, Noahnoah, how dementia is going to make him eventually forget everything, even Noah.  (He closes his eyes.”What do I say to Noah? How do I explain that I’m going to be leaving him even before I die?”)

Maybe it touched me so much because I’m a daughter, with two healthy but aging parents whose decline is statistically inevitable and I’m afraid of being personally affected by death and fear and forgetting and regrets. (” . . . sometimes it feels like having fallen asleep on a sofa while it’s still light and then suddenly being woken up once it’s dark; it takes me a few seconds to remember where I am. I’m in space for a few moment, have to blink and rub my eyes and let my brain take a couple of extra steps to remember who I am and where I am. To get home. That’s the road that’s getting longer and longer every morning, the way home from space. . . “)

Maybe it touched me so much because I am a mom of two young adults who are on the cusp of being an adult. (“Tell me about school, Noahnoah,” the old man says. . . “Our teacher made us write a story about what we want to be when we’re big,” Noah tells him. “What did you write?” “I wrote that I wanted to concentrate on being little first.” “That’s a very good answer.” “Isn’t it? I would rather be old than a grown-up. All grown-ups are angry, it’s just children and old people who laugh.” “Did you write that?” “Yes.” “What did your teacher say?” “She said I hadn’t understood the task.” “And what did you say?” “I said she hadn’t understood my answer.” “I love you,” Grandpa manages to say with closed eyes.)

Maybe it touched me so much because I feel the disappearing that happens with Alzheimer’s in the way that my elderly clients cling to my hand and look in my eyes.  (“Why are you holding my hand so tight, Grandpa?” the boy whispers again. “Because all of this is disappearing, Noahnoah. And I want to keep hold of you longest of all.” The boy nods. Holds his grandpa’s hand tighter in return.)

Maybe it touched me so much because after 40+ years of living, I finally found the love that Grandpa describes between him and Grandma. (He and the girl are on a road and they’re young again. . . She stood in front of him with January in her hair and he was lost. She was the first person in his life that he couldn’t work out, though he spent every minute of it after that day trying. “I always knew who I was with you. You were my shortcut,” Grandpa confides . . .”We lived an extraordinarily ordinary life.” “An ordinarily extraordinary life.” She laughs. . . They dance on the shortcut until darkness falls.)

Maybe it touched me so much because even now, when my kids are not quite kids but not quite adults, I feel regrets about what I’ve done and not done as a parent and whether I can fix my shortcomings. (“Don’t forget to put more stones under the anchor. And ask Ted about the guitar.” “It’s too late now.” She laughs inside his brain then. “Darling obstinate you. It’s never too late to ask your son about something he loves.”)

Maybe it touched me so much because for all these years I’ve been working with clients and families with Alzheimer’s, even though I’m the professional who they turn to for help and guidance, I didn’t have the answers that could truly help them. I could get them through the maze that is guardianship court, but I couldn’t help them through the maze that is forgetting and fear and love all rolled up in one. Fredrik Backman’s “And Every Morning The Way Home Gets Longer and Longer” showed me how I can truly help my clients with Alzheimer’s – by keeping them company while they walk down the forgetting road. (“We just need to be careful, does that make sense? With your grandpa. His brain. . . the think is, Noah, sometimes it’s going to be working slower than we’re used to. Slower than Grandpa is used to.” “Yeah. The way home’s getting longer and longer every morning now. . . What can we do to help Grandpa?” The dad’s tears dry on the boy’s sweatshirt. “We can walk down the road with him. We can keep him company.”)

I can’t say enough good things about Fredrik Backman’s novella.

******

Passages in paranthesis are taken directly from Fredrik Backman’s “And Every Morning The Way Home Gets Longer and Longer.”

Tips for Traveling With Someone Who Has Dementia

airplane travelAre you considering traveling somewhere with a loved one who has dementia or Alzheimer’s?  There are unique challenges involved in doing so.  However, with some careful planning, it can be an enjoyable experience for all.  Check out the publication from the Alzheimer’s Association for travel tips on traveling with a loved one with dementia.

Alzheimer’s Association’s 2016 Report

alzThe Alzheimer’s Association released it’s 2016 Alzheimer’s Disease Facts and Figures report.  Lots of good information in it, including a section on the toll/cost of the disease on caregivers.  Take a look and share this link with anyone who may be affected by Alzheimer’s.

Some interesting statistics from the report:

  • 1 in 9 people age 65 or older has Alzheimer’s Disease
  • 5.4 million people in the U.S. (of all ages) have Alzheimer’s Disease
  • In Minnesota, it is estimated 91,000 people have Alzheimer’s in 2016. This number is projected to grow to 120,000 in 2025. (See page 20 of the report for a breakdown of all the states)
  • Every 66 seconds, someone in the U.S. develops Alzheimer’s
  • 15 million Americans provide unpaid care for someone with Alzheimer’s or other dementia
  • In 2015, the family and unpaid caregivers provided 18.1 billion hours of unpaid care (21.9 hours of care per caregiver per week)
  • Caregivers spend an average of $5,155 of their own money (out of pocket) per year to take care of a loved one with Alzheimer’s.  This is in addition to the unpaid care they provide.
  • 27% of Caregivers had to reduce hours at work, in order to care for their loved one.  On average, this resulted in a $15,194 income loss compared to the previous year.

Still Alice Movie Review – Live in the Moment

 

still alice quote

 

For those that aren’t familiar with “Still Alice”, the plot summary (taken from Amazon):

Still Alice is a compelling debut novel about a 50-year-old woman’s sudden descent into early onset Alzheimer’s disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University.

Alice Howland, happily married with three grown children and a house on the Cape, is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early onset Alzheimer’s disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away. In turns heartbreaking, inspiring and terrifying, Still Alice captures in remarkable detail what’s it’s like to literally lose your mind…

“Still Alice” is one of my all time favorite books.  It’s exceptionally well written.  It’s thought provoking.  It touches on a topic that is near and dear to my heart, because so many of my clients, or my clients’ loved ones, have Alzheimer’s disease. It made me laugh.  It made me cry.  It made me think.  So going into the movie, I set myself up to be disappointed with it.  Most movies that follow books just aren’t as good.

I’m happy to report that the movie version of Still Alice was every bit as good as the book.  If not better. Julianne Moore did an exceptional job of portraying Alice.  The supporting family members – particularly Lydia – gave us a realistic impression of the feelings and frustrations that family members dealing with a parent/spouse having memory loss must feel. For the viewer, it wasn’t just like watching a movie about someone diagnosed with Alzheimer’s.  It was so much more.  It was like we – the audience – were experiencing the things that Alice – and her family members – were feeling.  Sadness. Embarrassment.  Fear. Dismay. Anger. Even happiness. The viewer truly experienced it all.  I knew that I would get emotional and cry during the movie.  What I wasn’t prepared for was the whole theater to be in tears, one person so overwhelmed she was choked up and sobbing.

As I sit here now and think about why the movie evoked such strong emotions from all the viewers, I think it’s because all of us see ourselves in the movie.  We worry that one day we might be Alice .  We worry that one day it will be our spouse or parents or sister that get the disease. And with the prevalence of Alzheimer’s – an estimated 5.1 million Americans having the disease, and more people expected to get it with the aging population, and no cure* – we are right to worry. Many, if not most, of us already know someone who had or has Alzheimer’s.  And it is a horrible, terrifying disease to watch a loved one deal with.

My favorite quote from Still Alice, because it is a reminder that today matters – whether we are the lucky ones who are healthy or the ones who aren’t so lucky:

“And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with…My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today doesn’t matter.”

Live in the moment.  Make today matter.

*Statistics from www.alzfnd.org

 

 

“Still Alice” Movie Trailer

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One of my all time favorite books is “Still Alice” by Lisa Genoa.  Still Alice is the story of Alice, a linguistics professor who is afflicted with early onset Alzheimer’s. I was so happy to see that it will be released as a movie on January 16, 2015.  For a little background and an exclusive movie trailer, visit this link from the Alzheimer’s Reading Room.

The most important reminder that I took away from the book, and this trailer, is “Live in the Moment”.

Stay tuned in mid-January for a more in depth review of the movie.

National Alzheimer’s Plan

Today the Obama Administration announced the release of the National Alzheimer’s Plan. U.S. Secretary of Health and Human Services Kathleen Sebelius reaffirmed our nation’s commitment to conquering Alzheimer’s disease and related dementias, with a specific goal of finding effective ways to prevent and treat the disease by 2025.
The Obama Administration also published a new website alzheimers.govhttp://alzheimers.gov/ which will serve as a resource for those fighting the disease, as well as those caring for individuals who have the disease.  At first glance, it looks like a very comprehensive resource,.
Read the entire text of the National Alzheimer’s Plan here 

New Report: Alzheimer’s From The Front Lines

The NAPA (National Alzheimer’s Project Act) issued it’s new report addressing the 10 key issues that they believe must be addressed in a National Alzheimer’s Plan. The report, called: Alzheimer’s From the Front Lines: Challenges a National Plan Must Address can be found on the Alzheimer’s Association’s website (and a link is also provided here). The report was prepared based upon the input of over 43,000 people from across the United States, who shared their insight, experiences and hardships. The 10 key issues which emerged that must be addressed by the National Alzheimer’s Project include:

  1. A lack of public awareness
  2. Insufficient research funding
  3. Difficulties with diagnosis
  4. Poor dementia care
  5. Inadequate treatments
  6. Specific challenges facing diverse communities
  7. Specific challenges facing those with younger-onset Alzheimer’s
  8. Unprepared caregivers
  9. Ill-equipped communities
  10. Mounting Costs
To see facts and statistics about how Alzheimer’s impacts Minnesotans, based upon the input they provided into the report, see here. In Minnesota in 2010, there were 94,000 people 65 years and older with Alzheimer’s. In Minnesota in 2010, there were 237,441 caregivers who provided unpaid care valued at over $3.2 billion.
For more information on the National Alzheimer’s Plan, visit www.alz.org/napa

Generation Alzheimer’s: The Defining Disease of the Baby Boomers

Looking for quick facts and information regarding the latest breakthroughs in Alzheimer’s Disease and the effects on the Baby Boomer generation?  Read the latest at the Alzheimer’s Association’s micro-site, which includes access to it’s full report:  Generation Alzheimer’s:  The Defining Disease of the Baby Boomers.

Ratings and Reviews

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