Saturday, March 21, 2015

Comfort for a Sad Day

Perseveration is sometimes a behavioral manifestation of those who have suffered brain damage. The term means simply that the patient repeats a certain action or behavior over and over and over again.
This morning I picked up my mother's journal to find three pages of entries like the ones above, an example of perseveration; here is visible evidence that her poor mind has been compromised by the hateful effects of Alzheimer's. For some reason this outward symptom of her dementia upset me terribly. The proverbial straw, I guess. 

I cried out to the Lord, weeping:
Lord, You know what portion of my tears are selfish; what will I do without my mother?  
You know what portion of my tears consist of terrible empathy for my sweet mom who is lost in a confusion she did not choose and cannot help, a victim of the brain damage caused by Alzheimer plaques and tangles. I dread the increased suffering she may have to endure.

And You know what portion of my tears come from worry that the same thing might happen to me.  
I had lapsed to fear not only of Mom's death, but of the struggle we may have to undergo on her way to that final passage. So I turned to the road map the Lord was gracious to provide us near the beginning of my mother's battle with Alzheimer's.  Over a series of months I recorded His guidance into a manuscript that became My Mom Has Alzheimer's: Inspiration and Help for Caregivers (Bridge-Logos, 2009). Here are quotes from the book that have helped me today:
The Lord... is sovereign over death. His good and perfect will encompasses every life event, even those that cause us pain. He is able to work every circumstance into conformity with His will, for our good (p. 247).
 Jesus Christ has conquered death. His purpose in coming was to deliver me and to set me completely free. He is trustworthy and He is in control. I pray for grace and the will to look steadfastly at Him so that I will not be afraid (p. 250).
Our physical bodies are like the alabaster vase that held the nard Mary poured upon the feet of Jesus. The vase was broken to release the perfume. Each of us is headed toward an appointment with physical brokenness because no one escapes physical death. Sometimes the process of death is painful and for just a little while, we are preoccupied with the breaking of the container, but then the fragrance of Christ flows forth as the spirit is released (p. 255). 
And what wonderful comfort from Scripture: 
“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them” (Isaiah 42:16 NIV).

“And you saw how the Lord your God cared for you all along the way as you traveled through the wilderness, just as a father cares for his child. Now he has brought you to this place” (Deuteronomy 1:31, NLT).

“He heals the brokenhearted and binds up their wounds” (Psalm 147:3 NIV).
I don't feel happy right now, but I am calm.  I don't like feeling sorrow, but I am assured of the Lord's comfort. I'm tired but I am confident the Lord will provide me strength. 

As I write these words, Mom is comfortably tucked into bed, sleeping soundly. She is doing ok right now, and because of God's grace and guidance, so am I. 

Saturday, March 14, 2015

Helpful Products for a Hard Time

Nearly eleven years of caregiving have taught me that transition times--when the patient is undergoing a downward turn--can create tension and trigger grief over what has been lost. I'm struggling through a sad transition time with my mom--please pray for us!

I really am very tired today but am shaking it off right now so the remainder of this post should be more upbeat and downright helpful!

Below you will find a list of products that have helped us during the complete incontinence Mom suddenly began to suffer a week or so ago. I worried that she had suffered a small stroke, but our nurse practitioner treated her for a urinary tract infection. She has now actually regained a measure of bowel and bladder control since her difficulties of last week. Note to caregivers: in Alzheimer patients, urinary tract infections can cause seemingly unrelated symptoms such as hallucinations, apathy, withdrawal, and loss of will to make those all important trips to the bathroom.  For whatever reason, for two days Mom just withdrew into herself and sat immobile, unwilling to stand or walk, and although I knew UTI's can present with atypical symptoms in the elderly, I didn't recognize the signs. You'll find a helpful article about UTI's in the elderly here.

Here are those products that have helped us through this time: 

Tranquility overnight adult diapers are the best I've found so far to prevent most leakage. When I added a Poise pad to these the bed stayed dry throughout the night.

This priva sheet protector has saved me a world of grief. I use baby diaper pins to secure it on top of the sheet, so that in the mornings I simply unpin the protector and have only to launder it--an easy task as compared to having to change the bulky mattress pad and under sheet on a daily basis.

These baby diaper pins fasten securely and have not come undone. I put three on each side of the waterproof pad. I also use these to secure Mom's blanket to the opposite side of her bed so that she doesn't pull them off and become entangled when she tries to walk away. This had become a problem, and Mom claimed it was because she always rolls over the same way (this elicits a mind picture of her performing 360 degree rotations throughout the night). For whatever reason, before I began securing them with diaper pins, her blankets ended up on the floor by her walker by morning.

For now, Mom's problems with incontinence have decreased in severity and my caregiving load has lightened once more. But her bout with this UTI motivated me, finally, to tour a nearby nursing home and it was an overwhelmingly positive experience. Caring staff, a perky little dog who greeted us at the door, residents who looked clean and happy, a popcorn machine and movie room--I came away feeling as though a heavy burden had rolled off my shoulders. When my knees buckle and I can no longer take care of Mom here at home, it is wonderful to know there is a place where she can be happy and well-cared-for apart from me.

Meantime the Lord just keeps providing the help we need at our point of need.  Preparing to release my mother into the care of others is hard, but I know the Lord will see us through.

Tuesday, February 17, 2015

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!  

Tuesday, February 10, 2015

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.

Sunday, February 8, 2015


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

Sunday, February 1, 2015

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:

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

Sunday, January 18, 2015

Ten Years and Counting...

I've grown used to a look of incredulity on peoples' faces when I tell them my husband and I have taken care of my Alzheimer's mom in our home since November of 2004, and I can hardly believe it myself.  But from my vantage point ten years into this adventure, I am able to see ways God has brought blessing to us not only in spite of this difficult situation, but through it.

When I began this post I tried to include all of the amazing ways God has taken care of us while we have provided care to Mom, but the list was long and some of the details seemed too personal too share.  Suffice it to say God has provided for our jobs, finances, and living conditions in ways that at times have seemed miraculous. And, though I'd always known my husband was a pretty admirable guy, he gained hero status in my eyes by his willingness to partner with me to care for Mom.  I can honestly say that taking care of Mom together has blessed our marriage. 

I couldn't see the potential for any of these blessings on that day back in the spring of 2004 when the doctor said, "I am confident of the diagnosis of Alzheimer's disease for your mother. She meets all of the criteria."  I thought it was the end of the world as I knew it. But as we prayed, asked others to pray for us, and earnestly sought God's will, we became convinced that we should provide care to Mom at home.  Step by step the way opened for us to do so.

Through Mom's Alzheimer's I've learned the truth of the statement, "Where God sends, God will provide." The transition period was rough, but we've had more or less smooth sailing since that first difficult year.

If you are a Christian struggling with a transition into the caregiving role, I hope this post serves to remind you that the Lord hasn't let you down yet, and He won't now.  Remember that God provides us just enough information to navigate the worries of today, and He expects us to trust our tomorrows to Him.  Whether you are facing nursing home placement, home care, or end of life issues for someone you love, God is faithful.  It is safe to leave the future in His hands.