Monthly Archives: October 2013

Five Easy Ways to Put Your Heart on the Page: Finding Words for the Caregiver’s Journey

My mother’s Alzheimer’s drove me to write. My writing inspired me to speak.
Over the last years, I have received enormous pleasure from connecting with people all over the world, sharing the stories of finding hope in the caregiver’s journey.  images

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.
My initial reaction was:
Visit with mom
Drive home, blowing my nose and wiping tears from my cheeks
Misplace my car keys
Stare numbly into space   images

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestion I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed in my mind. The next day, I slightly altered my behavior:
Visit with mom
Drive home, blowing my nose and wiping tears from my cheeks
Misplace my car keys
Write numbly for an hour

Writing my Way from Grief to Insight

I poured out my fears, confusion, anger and grief. After doing this for a week,
I began noticing how fascinating my visits with Mom were; we were explorers on a wild inner trek.
I began documenting our time together, sometimes even taking notes during my visit. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw how much hope, promise and energy there was in my new world.

Instead of crying when I drove home, I thought about how I could transform my notes into a meaningful essay.  As I shared my work with friends and with my writing critique partners, I realized I was chronicling my mom’s last years and capturing part of our family history.

Five Easy Ways to Bring Your Life to the Page

How do you take a challenging part of your life and bring it to the page?

1. Pour Out Your Feelings.
Give yourself time to feel your emotions, whether it’s through writing, art, music or other.

2. Notice the Details.
Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

3. Uncover the True Story.
Look for the universal meaning in your specific experience. How have you changed? How will the     reader change through reading your words?

4. Seek Feedback.
Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

5. Share Your Writings.
I was lucky enough to read some of my stories to my mother and father and receive their blessing for my work.  Anytime I featured people in a story, I shared it with them to make sure they were comfortable with the material. When they’re comfortable, it’s time to share with friends and a wider audience, if you wish.  images

Q 4 U

What are some of your writing tips?


Filed under Communication, Creativity, The Arts

Celebrating the Differences: Our Teachers are Everywhere

Part of my journey has been opening myself to love in all its glorious guises. As my mother went deeper into Alzheimer’s, I also feel we went deeper into love, the kind of true emotion that goes beyond words.

I am now deeply in love with another amazing person, my granddaughter Annabelle Rose, who doesn’t yet have the words to express her feelings but whose  ability to connect is truly inspiring. 1378651_10151736173247955_1493338418_n

My daughter Sarah wrote this note to Annabelle and I wanted to share it with you. It really captures the essence of how we can appreciate, learn from and celebrate what is extra and unique about every one of us.



Sarah’s  Journal Entry: October 1, 2013

Today marks the first day of Down Syndrome Awareness month — the first time that I have been aware, as it is Annabelle’s first October. Here is my wish:

Dear Annabelle,

I hope you recognize that having an extra chromosome makes you extra special. I do not want to define you by that addition to your DNA, nor do I wish to minimize the impact that it will have on your life. I believe that you will be able to accomplish great and amazing things. I hope to help you find your passion and to express yourself in every way. I want for you what I want for your brother. I will do everything that I can to give you a solid foundation — early intervention and love.  1376987_10151736175542955_1503456887_n

I have celebrated the last 7 months, expressing gratitude for my healthy and happy baby girl. I did not expect a girl. You are a blessing. Being different does not diminish or change that fact. I imagine life will be more of a challenge for you because of that fact. I hope to protect you from any cruelty or ignorance. I will work hard to educate and advocate. I am aware of Down Syndrome. It is with us everyday.  But this month, I aim to celebrate.

I believe that you will teach us just as we teach you. I have been forced to put my education and training into practice. I cannot live in the future — none of us knows what it will hold. However, we can plan, prepare, and then be mindful of this moment. Each moment with you is filled with joy and wonder — the sweetness of your smile, the magic of your laugh. I love to be with you. I love to help you get stronger and develop new skills. We are being trained, and the information is amazing. We will learn how to help you in the best possible ways. You have a team dedicated to your health, happiness, and future.

You are different, but you are the same.  You have an extra chromosome. You also have the same 46 that we have. You have a patience and sweetness that is hard to define. You have an interest in people and the world around you.  You stay awake to watch and observe, refusing to miss any action by napping. When you sleep, you sleep with abandon. You often “talk” during this time.  I could write for hours about how much I love you and all the special things that you do.

Your mom.



Photo Credits, Ann Brown


Filed under Advocacy, Inspiration

Connecting in Long-Term Care: Seven Sure Ways to Have a Great Visit

It wasn’t just an ordinary visit. I walked into the long-term care facility and made my way to the memory care unit. I paused in front of the locked door, pulled a crumpled scrap of paper out of my pocket and tapped the entry code into the keypad. As I walked to my mother’s room, her new home, I felt sad, confused and guilty. How was I going to connect with my mom in this strange new environment?

Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide, has 16 years of experience as a psychologist in long-term care and understands the emotions and confusions  family or friends might feel when visiting in a long-term care facility. Here are her tips for having a meaningful connection.

Seven Tips for Visiting a Loved One in a Long-Term Care Facility   images

Many families find it stressful to visit their loved ones in long-term care, especially if dementia has changed their usual ways of relating. Here are seven ways to make the most of your visits:

  1. Help the room feel like home by bringing photos and bedspreads, creating an environment that feels more comfortable and familiar to your relative and more pleasant for you to visit.  Labeling the photos with names (such as “Oldest son, Sam”) provides reminders in your absence and clues for the staff that are with your loved one daily.
  2. Turn off the television or radio and close the door during your time together. When the room is quiet and free of distractions, it’s easier for someone with dementia (and for those with hearing loss) to focus on their visitors.

  3. Try to converse at the same height, sitting on beds or chairs rather than standing while your loved one is sitting. Bring in small folding chairs and stash them in a corner if you tend to have lots of visitors.  Remember, though, that some people react better to hosting just a couple of guests at a time rather than a possibly loud and confusing crowd.

  4. Use memory aides such as photos and magazines of beloved hobbies as conversation starters.  Creating a memory book together can be a great way to spend some time, especially if the focus is on enjoying the process and the conversation that comes from it rather than on completing the memory book in a set amount of time.images

  5. Go with the flow of the conversation, allowing your loved one to talk about what’s on their mind, rather than asking questions they used to be able to answer but no longer can, which is upsetting for everyone.  For instance, replace, “Don’t you remember X?” with “Your flower garden was so lovely,” adding details that reflect your appreciation for their abilities and see what response this generates.

  6. Find pleasurable activities that don’t involve talking, if that’s beyond your loved ones’ capabilities at this point.  Listen to music, hold a private stretching class, go outside and enjoy the sun and the birds.  Just be, pleasantly, without expectations.

  7. Talk to staff members and to other visiting families and become part of the long-term care community.  Media reports to the contrary, most long-term care homes are filled with people who are trying to do the best they can for your loved one under challenging circumstances.  They can become your allies, supporters, and teammates in care.


Eleanor Feldman Barbera, PhD is an accomplished speaker and elder-care coach with over 16 years of experience as aImage 1 psychologist in long-term care. Read her book, The Savvy Resident’s Guide, for the inside scoop on how nursing homes work and visit her award-winning website,, for more tips on how to thrive in long-term care.

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Filed under Advocacy, Caregiving

Making a List: Including Fun in the Caregiver’s Journey

“You need to do something fun,” a friend said.

“I’m too tired to think of something fun,” I said.

tiredMy parents were going through a particularly hard time; my mother’s behavior had gone beyond the scope of assisted living and they had advised that she go into a psych ward to have her medications re-evaluated. My father was worn to a frazzle and we were both unnerved by Mom’s zombie-like appearance as the doctors tried to figure out the correct combination of medicines. Fun seemed like a word from another planet.

Yet I realized my friend was right: I needed to do something that would cheer me onward.

Creating Fun-Sized Options

So early one morning, before I was tired or confused or sad, I made a list of little items or activities that gave me a sense of well being.

At first, the list was small—I was too brain-worn to think of much:

Eat chocolate.

Read for pleasure.

Do a crossword puzzle.

Walk outside.

Talk with people I cared about.

chocolateI crammed the list into my pocket and when I thought of something new, I jotted it down.

During the next week I added:

Listen to Dancing Queen.

Hold a stuffed bear.


Go to yoga.

Sleep late.

Dance to Dancing Queen.


Making Time for Fun While Still Being a Very Responsible Person

That weekend, I vowed I would do three things on my list. I ate chocolate (OK, that was an easy one, but I had to start somewhere!), talked with a friend, and read two chapters of a mystery.

I felt lifted up, as renewed as if I’d had four hours in the spa. And I still was there for my parents, my work, and other life responsibilities. So I continued the process of adding to my list and incorporating one fun thing into every day.  Sometimes it was only part of a crossword puzzle or creating a three-minute collage while I was on hold with my mother’s doctor. But even those few minutes gave me back a part of myself and allowed me to more fully appreciate my interesting and chaotic life.

Q for U:

How about you — what are the small fun things on your list?         And are you giving yourself time to do them?


Filed under Creativity, Taking Care of Yourself