What Splashes Out of My Cup?

Lest anyone who regularly visits ‘Barefoot Lily Lady’ think that I’m living in an Alzheimer’s caregiving utopia where we are always sweet to one another and I always execute Pinterest-worthy caregiving ideas at every opportunity, let me share a slice of reality.

If you had a little window into our world, yesterday wasn’t pretty. And today I wasn’t exactly setting the best example either.

The fact is, I make mistakes in caring for her daily.

Let me confess that I am sometimes not very kind and respectful in my dealings with her – especially in the wee hours of the morning or after a night (or several nights) with little to no sleep.

Right now, as I am composing this post, I am viewing her via the camera in her room and she is ripping her blanket off the bed. I don’t think I have fingers and toes left to count the number of times I have put her bedding back in place today so that she can be warm and cozy. This gathering behavior is common in this later stage of Alzheimer’s where they derive pleasure from manipulating and touching things.  (Here is a very helpful summary of what renowned Alzheimer’s expert, Teepa Snow, calls the “Gem Stages” of Alzheimer’s. My mom is “Amber,” heading into “Ruby” territory. You can request a free DVD or download on this subject on this page.)

The truth about myself is, I often hear my tired and groggy self barking out requests like a drill sergeant giving orders. Last night it was “Please STOP taking your blankets off the bed!” The “please” was moot given my obviously frustrated (and angry) tone of voice. I sometimes forget that the truth about Momma is that she just does not understand what she is doing and she cannot stop this tactile behavior.  Alzheimer’s has eaten away the part of her brain which helps her understand my words and discern how to implement any instructions I give her.

Every day I am as sad for her obvious anxiety and anguish over knowing something is wrong with her brain as I am frustrated with her inability to follow simple instructions.  In those times of frustration, I am sometimes mortified by what comes splashing out of me. As I whipped the blankets off of the end of the bed for the umpteenth time, it certainly wasn’t godliness, love, or the Word of God splashing all around me when life’s cup was jostled.

Today, as I reacted in frustration, God brought to mind a lesson one of my Awana teachers gave years ago (MANY years ago). I am recalling her poignant illustration for life. Our Bible teacher entered the room carrying a cup filled to the brim. Each step was taken slowly and carefully so as not to spill a drop. Just as she reached the front of the room, another teacher abruptly stood up and bumped our Bible teacher’s arm, sending the beverage splashing all over those seated nearby. Yes, it was all staged, but the teacher used that moment to remind us that water came out of her cup. Not coffee. Not soda. Not milk. Water. And the reason that water came out of her cup when she was bumped was because she had put water into her cup. My teacher used that teachable moment to help me understand that if I want godliness to splash out of me when I get bumped in life, then I need to grow in Christ by spending time in prayer and in His Word.

When the bumps of life come along, what spills out of me? 

Lord, please help me take time to fill my cup to the brim with your Word. When Momma bumps me next time, may she be splashed with your compassion in my attitude, loving-kindness in my actions, joyfulness in my countenance, and grace in my words. 

When Time Stands Still

Here’s a little journey in time back to the day we purchased a Dayclox (pictured) to assist Mom in being able to more easily figure out what day or time it is. It was one of our best caregiving purchases ever. There are different versions of this clock available for sale on the web. One that I think would be particularly helpful in this stage of mom’s dementia is the Hurrah HDLC003 – which spells out whether it is morning, afternoon or evening  (the abbreviations “a.m.” and “p.m.” are starting to lose their significance). Others have audio features for the vision-impaired. There is even one called “MemRabel 2”, a similar clock which allows the caregiver to program in up to 20 helpful reminders – particularly useful if your loved one is in earlier stages of dementia and spending time on their own. I share this post and links in the hope that it will give ideas for helpful memory aid resources to caregivers who have noticed their loved one struggling with measuring time.

Facebook Journal Entry – Friday, October 16, 2015

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Momma dressed up for Crazy Hat Night in Awana

Time seems to slip through your fingers when you don’t have a schedule filled with meetings, committees, tasks and work routines. Retirees often comment that it is sometimes hard to keep track of the days when you no longer have a job to go to. Momma wasn’t one of those retirees. When Mom took early retirement from her nursing career, she found myriad ways to fill her time with meaningful volunteer activities. Spring Creek Church benefited greatly from mom’s organizational talent. In the words of one appreciative Awana director, she became an “indispensable organizational right arm” in this weekly children’s ministry. Mom and Dad also belonged to Kings Men and Daughters (now known as King’s Class), a life group (an adult Bible fellowship the size of my current church congregation, mind you!) for seniors at her church. Being a friendly, detail oriented person, Mom was perfect for making sure new guests to the class were introduced to others, their contact information was obtained, and that welcome letters were sent out. If you were a “regular” and absent for any length of time from that class, she knew it and would make sure that your caregroup leader noticed too.

Another recipient of Mom’s generous gift of time was Shepherds Ministries, a non-profit ministry in Union Grove, Wisconsin whose goal is to help those with intellectual disabilities “turn disabilities into abilities.” A volunteer group of seniors from Spring Creek would go down on a regular basis to help the organization with mass fundraising and newsletter mailings. Mom could be counted upon to be one of the members of that group. The ministry so touched the heart of my mother that she agreed to play a very special role in the life of one Shepherds resident in particular. Mom became Carolyn’s advocate, stepping into a guardianship role when Carolyn’s family could no longer serve in that capacity. To Mom, Carolyn became almost another daughter, with mom as often as she could attending her special functions, celebrating her birthdays, taking her to doctor appointments, helping her with financial decisions, and all the things you would expect a mom to do.

Time flew by in those days, but there came a day when Momma knew she could no longer reliably do these ministries. One by one, she resigned from the responsibilities of the ministries she loved and reluctantly stepped down from being Carolyn’s advocate. Now, without deadlines and appointments to keep, time often stands still. For a person whose memory is failing, order of days, weeks and months is lost. Over the summer months, we noticed Mom struggling to remember what day it is more often. She was so confused on one day that she found it necessary to walk across the street to visit a kind neighbor and ask for help in knowing what day it is.

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See the Dayclox story at http://www.daycloxusa.com

Wayne and I recently purchased something for her that seems to help. It’s a special clock. Mom can see its bold face from her favorite chair. In addition to telling Mom what time it is, it is also her visual cue as to what month and day of the week it is so that she can more effectively keep track of things on her appointment calendar. The clock was a bit pricey, but the investment essentially restored a small measure of dignity.

We realize that not too far down the road, as this wicked disease progresses, time will be lost in Momma’s mind. But for now, we have joy in knowing she has the restored dignity of being able to measure time once again.