Friday, December 25, 2009

The gift of a Midwest winter's seagull

Noon Christmas Eve, Peoria, Illinois …

I had to go out and pick up sliced cheese for an evening gathering. I'd have to join the long lines of other absentminded, last-minute shoppers. Bah humbug …

The gray on gray sky dumped seemingly endless raindrops on our heads here. And we were thankful it wasn't the snow the folks north, west and east of us were enduring.

For Christmas this year, I sent my wonderful and deserving husband Roger to spend the holidays with his family in Florida. Hmm, I guess it's the first time in 34 years that he and I haven't been together on December 25. Just realized that.

On the wet drive to the grocery store, I thought about families I know who are going through their first major holiday this month after the loss of a loved one or other difficult circumstances …

The husband, father and grandpa who is spending his first Christmas in a care facility because that wicked Alzheimer's took too great a toll on his devoted spouse and caregiver.

The two kids and widow who are spending their first Christmas without their fun-loving dad and husband because of merciless brain tumors.

A woman marking Hanukkah for the first time without her mother, one of her best friends, a source of courage, strength, inspiration and a gentle sense of humor.

The mom and dad who accepted the heartfelt gifts of ornaments from friends to decorate a tree in memory of their son, to tell the joyous story of a young man who left this world far too soon.

The widow who tries to understand why her husband passed away very unexpectedly from a heart attack, yet rejoices that her son in the military is home safe on leave for the first Christmas in several years.

As I waited on endless traffic in pursuit of mozzarella and swiss, I also recalled the glorious firsts I had witnessed this year …

The stroke survivor who sang "Amazing Grace" at stroke camp this fall and left all of us weeping and applauding.

The stroke survivor who climbed the wall higher at stroke camp than he did last year and earned a rousing cheer from everyone in the gym.

The stroke survivor who is learning to talk again by singing.

The young man at brain injury camp who got to dance again for the first time since an auto accident that also killed his brother.

The family with a loved one who has Alzheimer's and is finally pulling together to face this challenge.

As I pulled into the parking lot in search of a space, I again felt the hugs from just a few days earlier of my mom, dad and step-mom as if I were back home in Indiana hearing their words of love, support and how proud they are of me.

Then I suddenly remembered it was my mom-in-law's last Christmas 10 years ago. I was sad for an instant until I remembered how she was the poster child for the holidays, full of laughter and love and how she accepted a gift of dishtowels as if it were diamonds. She had loved seagulls and passed away in Florida, where she had always longed to live. Many a time, a seagull has suddenly appeared in my life to reassure me she's fine and still with me.

As a wave of loneliness threatened to dampen my spirits, I whispered, "I sure do miss you."

And as if I had been instructed, I suddenly looked skyward through my windshield and the rhythmic flipping of the wiperblades. Here in the Midwest winter sky flew a seagull.

Miracles happened! I RELAXED in a packed parking lot on Christmas Eve! I DIDN'T MIND standing in line for sliced cheese! I HUMMED all the way home amid the idiots who can't drive!

However, most important, I was overwhelmed by a deep sense of gratitude for all the individuals and families who have shared with me their soaring successes and shattering sorrows this past year. Each has taught me incredible and priceless life lessons so that I can translate them into the words I share with new audiences and friends, people who seek only a little compassion to cope with the everyday challenges of Alzheimer's, strokes, brain injuries and a growing number of catastrophic life events.

Do they have any idea how much they have inspired and enlightened me? How they've comforted others who face similar challenges?

"Thank you, Janice," I told the seagull flying overhead. "Merry Christmas."

Smiling, I then wondered how I would explain to Roger how his mom was up here visiting me while he was in Florida with the rest of the family. Oh well, she had always vowed she'd take me in the settlement if he and I ever divorced …

Sunday, December 20, 2009

To Dax, who has decorated our hearts and souls

In our community, there's a little two-year-old boy, Dax, who is losing his battle with cancer, despite the best and untiring efforts of his parents Austin and Julie, St. Jude Children's Hospital, and a growing circle of caring individuals. However, he's won the hearts of thousands of families around the world who have responded to a simple request to "Decorate for Dax." People were encouraged to put up their holiday decorations early this year and send photos so that he could enjoy the beauty of Christmas … if his tired little body gives up before December 25.

You can drop them a note of support at or make a donation to St. Jude in Dax's honor. I felt compelled to send the following message to Dax and his incredible, loving parents … and to remind myself just how precious life is:

To Austin, Julie and Dax,

As I've followed your heartbreaking, though inspiring, journey, I'm reminded of Margaret Mead's quote: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." I think that term "group" translates to "family," YOUR family. The three of you have changed many worlds, many lives in ways that are impossible to measure. You've reminded us of the real definition of love, compassion, courage and sacrifice. You've educated us in a classroom that is larger than life, touching a part of our souls that we didn't know could be stirred so deeply.

To Dax,

I think this well-known song was written just for you as you have inspired so many families to light up not only their homes, but their hearts:

This little light of mine
I’m gonna let it shine
Let it shine, let it shine, let it shine

Keep shining, Dax, and continue to give your mommy and daddy the light that will lift and comfort them forever. You and all your dear little St. Jude friends have redefined the word "angel." How so very blessed we all are to know you.

Tuesday, December 8, 2009

Stroke: Are survivors self-centered?

The first time I heard it in a stroke caregiver support group meeting, it surprised me. I leaned in closer to hear more and understand why it was a hot topic.

"All he cares about is himself."

Oh yes, it was hot enough to light a fire in this group.

While it may have seemed like an odd thing for a caregiver to say, most of her peers agreed without hesitation that their survivors have become self-centered, “Because it’s about me. I’m the one who had the stroke.”

Wow. Some tough food for thought to chew on. That statement speaks not just volumes, but libraries, about the changes a stroke can bring about.

Just remember that this isn't a blanket statement because every stroke, every person is different.

How about …

I don't think anyone will dispute this one: Survivors must focus on themselves to survive. They've got to muster every bit of energy, willpower, love and faith they have to simply live. We wouldn't expect any less of ourselves or a loved one.

And I don't think anyone will dispute this one either: Survivors may need assistance at times as they relearn certain skills, but some may also need to relearn the art of patience … or they risk burning out their caregiver or loved ones.

No wonder it's such a hot topic.

Saturday, December 5, 2009

Alzheimer's: An “ordinary” conversation

Overheard … an “ordinary” conversation between a husband with Alzheimer’s and his wife …

Wife: “Why are you so physically fit? Where do you drag me every single day, where I don’t want to go?”

Husband: “What do we do? In the morning. Where are we?” He laughs.

Wife: “Where are we at 5 o’clock? Where did we go?”

Husband: “Yes, we did. We went someplace. Oh yeah. We went to the …” While shaking his finger trying to remember, he grins.

Wife: “The gym.”

Husband: “Yes, we go to the gym almost every day.”

Wife: “We do every day. Not almost. I hate it with a passion though I know it’s good for me.” She vigorously shakes her head. “He’s gone for years. You start slow and you work until it gets kind of boring. What’s the first thing you do? Where do you go?”

Husband: “I go take off my shoes.” He laughs again.

Wife: “Not your shoes. Your coat. What piece of equipment do you go to first?”

Husband: “Okay, piece of equipment, that’s very, very easy. It is … I don’t know, what is it?”

Wife: “You walk. It’s called a treadmill.”

Husband: “Ah yes, treadmill. That is the first thing.”

Wife: “Then where do we go?”

Husband: “After that, we go hide.”

Wife: “You do that later. Where do you go after the treadmill? You sit down.”

Husband: “I do?”

Wife: “You pedal. What’s it called?”

Husband: “I don’t know.”

Wife: “You go on a bike.”

Husband: “Stationary bike.”

Wife: “Excellent! Then where do you go and hide?”

Husband: “I go and hide inside and work with you.”

She says he goes on the toning table and sometimes falls asleep.

Wife: “Then you join me and what do we do in that room?”

Husband: “Nothing much.”

Wife: “Geez, this is not a good day.”

Husband: “I think we do well doing what we do. I’m satisfied with it.”

Friday, December 4, 2009

Alzheimer's: Why we cannot judge others

While working on my book about coping with Alzheimer's, I interviewed a woman who quit visiting her mother in the nursing home because her presence agitated her mother. She chose not to visit in person but that didn't keep her from calling regularly to see how she was doing.

This is a poignant example why we cannot judge what another family does in caring for a loved one with Alzheimer's … unless it's obviously something inhumane or life-threatening. I remember one caregiver's statement that a neighbor quit speaking to her because she had made the difficult decision to place her husband in a nursing home. I used this example in my presentation to a group of caregivers and how the neighbor had no idea what this caregiver had sacrificed emotionally and physically to take care of him as long as she had.

Many, many caregivers go many, many nights without adequate sleep or help, leading to total exhaustion that is not only dangerous for the caregiver but for the loved one with Alzheimer's. And there are many, many caregivers who still visit their loved one daily after they make that difficult decision to place them in the care of an institution. It's never easy but sometimes becomes a case of survival.

No one knows what each family must do to cope with Alzheimer's. That's why we've got to listen and pay attention to caregivers … and make sure we're not ignoring or missing a cry for help.

Tuesday, December 1, 2009

Brain injuries: Best of intentions paved with pain

Her voice was soft, and I listened carefully. Her message was too important, and I didn't want to miss a word.

The woman was in an auto accident several years ago and sustained a brain injury that forced her to slow down. Her doctor told her she'd be walking again on her own within five or 10 years. She struggled with a walker and put all of her energy into learning how to walk but still had to rely on a wheelchair to get around most of the time.

Well-meaning friends thought she would be more "motivated" to walk if they took away her wheelchair and left her to move with only the walker.

She fell.

She fell again.

She fell again and again and again …

She thought her hip had broken on the last of eight falls. The doctors told her she didn't have one fracture: she had a half-dozen.

And modern technology finally revealed a spot on her brain stem from the accident that explained why she had not been able to walk. Add that to the destruction to her hip …

My heart simply broke as I fixated on her beautiful eyes.

I thanked her for sharing that difficult story. I told her it would help other people understand that what they consider "excuses"—depression, laziness, self-pity, or lack of motivation—that keep someone with a brain injury from making progress, can't be blamed. There are some injuries that can't repair themselves immediately or sometimes ever.

Yes, there are times and ways to challenge someone to improve … having them pick up something on a table to sharpen motor skills … letting the survivor keep trying to find the right word to make a request … but not removing a vital tool of their movement, something that keeps them as independent as they can be.

I asked if I could push her in her wheelchair out to where the bus with the lift waited to take her home. The sweetest smile and nod were a gentle and appreciative "yes." I told her I loved her "thumbs up" button she wore on her colorful holiday sweatshirt. She explained that it came from Disneyland where friends saw Mickey Mouse's familiar hand—the thumb and three fingers—giving this positive sign and immediately thought of her because that's who she is.

And the "thumbs up" she gave me in the chill of the night as I said good-bye was enough to warm my heart far beyond the distance I had to walk to my car.

I think I'll be carrying that around for a very long time.

'Tis the perfect season.