The Writing on the Wall

A box of colored pencils gave inspiration for my very first scribble, just inside the doorway of our room. 

This has been a busy season of our lives, with my dad's funeral, two weddings, two grandkids, one retirement, and one Alzheimer patient in the mix.  We built an addition onto our house for my mom when she was diagnosed with Alzheimer's eleven years ago, and life since then has rollercoastered along with little time for the home improvement projects I used to enjoy. Our bedroom hasn't received a fresh coat of paint in probably 20 years.  

Around the time of Mom's diagnosis, I began writing on the walls of our bedroom. Hey, everyone's entitled to a little bit of "crazy" when things get stressful, right?  My poor husband made no comment; he probably thought it safest to keep his own counsel.  And, home decor has never been of great concern to him; in the same way that he is able to ignore peeling paint or faded wallpaper, a few hieroglyphics on his bedroom wall did not cause him concern. 

It was freeing, in a way, because everyone knows you aren't supposed to scribble on the walls; it is a lesson learned before age five.  Perhaps it began as my protest against the tide of circumstances I could not control. But to be more charitable with myself, I'm a visual learner, and having inspirational words in line of sight helped me cling to God's promises during a time that almost everything else was unraveling. 

In the weeks before the wedding of my son--that promised boy, youngest child, now grown into a Godly young man--I recorded a Scripture a day in three neat columns on the wall facing the bed.  Steadied by these promises, room was made in my heart for a beautiful daughter-in-love, and my happiness was untainted by that painful-for-the-bearer and annoying-for-everyone-else mommy grief that sometimes robs joy.

As time went on, computer passwords, prayer lists, and quotable quotes vied for position with more lofty sentiments.  

One afternoon I sat on the floor between the dresser and the nightstand, and used my colored pencils to inscribe my life verse low on the wall where I would see it during afternoon rest times necessitated by the aching joints and exhaustion of an ailment that's never been diagnosed, but has caused me discomfort nonetheless.

I claimed God's promise of fruitfulness and have prayed to remain "evergreen" in old age, despite the aching and weariness He's allowed me to endure.  At some point I spilled a glass of water on the apple and the colors ran. 

 At this writing the ceiling's been redone, and I've spent the afternoon patching nail holes and putting a coat of primer over each of my scribbles.  Oddly, I don't feel much remorse over covering the  verses and sayings that sustained me during this demanding season of life.  Maybe that's because they are written on my mind and heart, but it is also because I am ready for a new song.  At last I am able to grieve the loss of the mom I once had without the kind of overwhelming grief that is so painful-for-the-bearer and annoying-for-everybody else. I'm able to grieve as those who have hope (1 Thessalonians 4:13). 

My newly painted bedroom will have just one saying on the wall, and that won't be in my own handwriting. I've bought a prepackaged "painted look" decal that says "Pray in everything, worry about nothing."  It's decorative and tasteful.  Not at all odd, like the scribbled walls I'm covering in a shade of subdued almost-blue.

But on second thought, I might break out my colored pencils one last time.  Back behind the nightstand on my side of the bed, where no one will notice but me, I could inscribe these words from George Herbert:

And now in age I bud again

After so many deaths, I live, and write

I once more smell the dew and rain,

And relish versing. Oh, my only light,

 It cannot be

That I am he

         On whom thy tempests fell all night.

(entire poem available here)...

Well, maybe not.  

We'll see!  

Nifty Product

I've found a little gadget that makes it less likely that my Alzheimer's Mom will go outside without my knowledge. It is a doorknob alarm that activates when Mom touches it, and stops as soon as she takes her hand away.  This might deter her from going out, and if she does decide to leave anyway, the alarm will let me know. 

Amazon has similar alarms, and they don't good reviews because they aren't supposed to be used on metal doors. I'm not sure why this is; perhaps contact with the metal of the door could conduct a static charge somewhat like a touch lamp, and activate the alarm? Our door is metal and we've had no trouble thus far, but the door is protected by a screen door on the outside. 

Thus far I've remembered to switch the alarm off before I feed the outdoor cats each morning.  I'll probably forget eventually but the alarm will quickly remind me.

I'm pleased with this simple and inexpensive alarm that adds another layer of protection for Mom.

Reminders

My mother's Alzheimer's disease has progressed so slowly that I'm sometimes lulled into the sense that our status quo is unchanging. This causes me to react poorly when Mom exhibits new symptoms. After ten years of caregiving you'd think I'd know better by now; but I sometimes need to remind myself of the need to be flexible, ready to adapt to Mom's changing needs. This morning I wrote a list of reminders: 

Mom operates from a damaged internal timetable and not according to the tidy schedule I've posted on her door. When she calls for no reason I can immediately see, I don't have to be manipulated by childish or rude tactics, but it is my responsibility to address any underlying need.    

I won't always be able to diagnose her needs accurately, but that doesn't excuse me from trying. She may say she wants to visit when she really wants a snack. Or, she might say she wants to come over into my part of the house when she really needs to use the restroom. I must accept the responsibility to be a bit of a detective and that I need to give the time to try several different solutions.   

God doesn't ask me to submit to what is sinful in my mother, but she will become increasingly unable to express accurately express what she lacks, and even physical discomfort will be mis-expressed. Her stock answers and complaints will become her only way to express any kind of need or discomfort.  I must learn to respond to her need and not necessarily to her actions and words.  It is my  responsibility to check her over and make sure she doesn’t have  physical discomfort, and to pray for her to be certain she doesn’t have an emotional or mental disturbance.  I am obligated by the terms of the anointing God has given me as my mother's caregiver to place her needs above my own plans for the day.

It's human nature (sin) to rebel against submitting to another person. This trouble with submission causes discord between caregivers and patients; the caregivers feels resentment because the patients' needs must take precedence, and the patient is upset by the need to submit to a caregiver's guidance. As Mom's caregiver I need to put aside my adolescent reluctance to submit to the demands of her genuine need. I also need Godly wisdom to discern whether she has true need--or not.  As Mom says, "It ain't easy, Breezy!" 

It wouldn't be right to end this post here. I've made it too straightforward; my solutions, though accurate, are too tidy. I haven't addressed the sense of betrayal I feel when my mother attacks me with a barrage of hateful words; her Alzheimer's causes a childish self-focus that is hurtful for me as the former apple of her eye.  In my mind I know her behaviors are mostly disease related, but my heart doesn't always get the message, and some days are harder than others. It is a constant struggle to keep my heart pliable in God's hand so that I can retain compassion toward Mom. 

My mother has forgotten that I am her precious child, but the Lord does not forget me.  And, "...Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness (Lamentations 3:22-23)."

<><

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you...Submit to one another out of reverence for Christ. Ephesians 4:32, 5:21

Value the Differences

This week John and I watched the movie Temple Grandin, with Claire Danes in the lead role. The film chronicles the life and work of a woman who was diagnosed with autism at age two, but went on to use her brilliant but different-from-the-norm mind to revolutionize the way cattle are handled in feed yards and packing plants across North America. The real life Dr. Temple Grandin* is a professor of Animal Science at Colorado State University and an award winning author and speaker. My response to her story from the perspective of a former teacher and current caregiver was profound gratitude for those who view the world differently. 

The overwhelming message of the film is the importance of recognizing the value of people who differ from the norm. We must work hard to understand what they try to tell us because their ability to think outside the box can benefit us all. Temple Grandin’s life has been blessed by her amazing intellect, but also because she found people who took the time to understand her unique solutions to problems others could not see. Without those empathetic teachers and mentors, her message might have been lost.

We avoid finding strands of commonality with those who are different or damaged because we are afraid. I’ve learned that interaction with an Alzheimer patient requires courage; we must overcome the reluctance to delve too deeply into the ways a damaged mind functions. It’s as though we fear that understanding how their minds work might create similar differences in our own brains. We distance ourselves from conditions that, if acquired, would make us susceptible to rejection or the vulnerability of illness. This reluctance to understand and listen has to be overcome if we want to be good friends, caregivers, and teachers. We risk missing the blessings those who see the world differently can provide.

I can relate to these lessons because one of the pitfalls of caregiving is the temptation to give way to the need for emotional self-preservation. It is a challenge to stay fully present for a loved one who is struggling with the confusion of Alzheimer’s. For example, in this tenth year since her diagnosis of Alzheimer’s, Mom fills page after page of spiral notebooks with words, and there is a temptation to give up my attempts to decipher her writings. With a chosen ignorance, I might protect myself from signs that she is deteriorating, but I would also lose the nuggets of wisdom and joy she still has to offer.  

This morning I pulled one of Mom’s journals from the shelf by her chair and opened it at random to find this day brightener:

I’m grateful for simple pleasures of a cold diet coke and a nice writing pen! Don’t get around much anymore, nevertheless—I have memories! Doesn’t take much to please a senior citizen, just our Lord and some nice music…don’t get around much anymore but we have fun! 

Today Mom’s words provided an unexpected lift for my day; another time they might give insight into her wants or needs. It is important that I keep paying attention, because even though Mom’s thinking patterns have become different from the norm, her thoughts and words have value still. 

---

 *Dr. Temple Grandin’s Autism Website: http://www.TempleGrandin.com

This post originally appeared as a Caregiver's Corner column in the February, 2015 issue of The Lebo Light