Monday, June 9, 2014

Two Sides of a Coin

Our local bookstore hosted its annual Author Extravaganza last Saturday afternoon, and I signed up in time to be one of the 40 or so authors present.

The man seated next to me teaches creative writing a nearby university. When he saw the title of my devotional for caregivers, he told me he had written a play about Alzheimer's.  I asked, "From what perspective?"

He looked a bit taken aback and so I explained, "I wrote my first book from the perspective of one who has to deal with a parent's illness, but the book I've just completed was, as nearly as I could manage it, from the patient's perspective."

"Oh," he said, "Well, the play is about people who have to cope with someone else's Alzheimer's disease."

I would like to see that play.  After ten years of caregiving, I imagine I would relate to the humor and pathos of the challenges his protagonists face.  However, I've become increasingly aware of the importance of taking time to imagine myself in in the patient's role.  This is not a comfortable exercise, but it is a necessary one if I'm to maintain compassion and empathy for my mom.

For example, this morning Mom yelled at me when I opened her apartment door at 8:00 a.m., though I was bearing her morning toast and coffee.  "I have been waiting to hear from somebody," she spat.  "I'm isolated in here!"

The echoes of parental authority reverberate in my mother's anger, and so it is especially difficult to guard my heart against damage from her accusations.  I placed her breakfast on her lapboard, then delivered a stern lecture. "Mom, look around you.  There is music playing, the shades are open onto a beautiful day, and this apartment is comfortable.  Instead of getting angry I wish you would give me the benefit of the doubt and assume everything is all right."

However, when I came out of her room I took a deep breath and made a conscious effort to put myself in Mom's place.  She had gotten up a little earlier than usual and emerged from her bedroom to find there was no breakfast waiting on the table by her chair.  She could hear no sounds from our part of the house.  As far as she could tell she was alone without prospect either of human interaction or her well-loved toast with jelly!

My new book is a devotional for dementia patients who love the Lord. Because music triggers memories and speaks comfort even when language skills have faded, each devotion is linked to a well known hymn.  Many of the devotions talk about having patience with those who provide care, even when those people are unjustly cranky or rude (!).  All of them remind the reader of God's love, because no matter what else our loved ones forget, we must not let them forget they are beloved of the Lord.  If you know a caregiver who uses the Kindle app on a phone, tablet or laptop computer, send them to Beautiful in Each Season: Devotions for You.  The book will be available in paperback in a few months and when it is published it will be listed at the same Amazon link as the eBook.  

My mother reads her spiral bound prototype of this devotional each day, and I really do think it helps her cope with me!


  1. This is something that I wish I had had when I was through this with my mama. Take care of yourself too because if you don't when it's over, you'll have your own health issues. I took care of my mom and dad for 5 years. They have been gone 4 and I'm still exhausted and fighting diabetes that I probably had then but contributed it to fatigue. Blessings my friend.

  2. You are such a devoted daughter. I praise God that He has given you the talent and ability to write this new devotional for those who have dementia. Will it also be available in an audio format? I thought that my grandmother was reading a lot. When I found her reading with the book upside down, I knew that she had been putting her game face on.

    We, my husband and I, think you and your mother are two of the most beautiful ladies!

    Many blessings...

  3. Bonnie and Vee, thank you both for your kind, supportive comments. I appreciate your empathy more than you know. Vee, thanks for the mention of an audio format…this instantly clicked for me. Of course that would make the devotional more accessible! If I do the narration I'm not going to sing all those hymns, though….;-)

  4. Congratulations on your new book. It is too late for my husband, however, as he is bedridden now. I always ask him who is going to pray now, and he says me. I loved it when he could.

  5. Carol, how is your husband's receptive language? The devotions are simply written and are designed to work equally well when they are read aloud by a caregiver or independently by patients who are still able to read without guidance. The eBook has live links to hymn lyrics--and with the proper plug-in midi files of the hymns will play. I don't like to think it is too late for your husband! But my prayers are with you regardless…God bless you.

  6. It is so hard when you are the "parent" to a dementia unruly "child", with none of the joys of parenthood and none of the methodology you can apply in childrearing (children are, after all, still rational beings - most of the time...).

    I wrote a poem on this today, so reading this entry was very timely on my part!