God’s grace – Barefoot Lily Lady

A Special Moment

Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.
James 1:17 (ESV)

I’m not going to sugar-coat it. This leg of mom’s Alzheimer’s journey is rough. To this point in our journey together, there has almost always been a spark of recognition and joy in mom’s eyes when she sees me. In her mind’s eye, I am not always her daughter, but I’m always someone special: sometimes her mom, other days her sister or best friend. Gina, co-owner of BeeHive, and also Mom’s nurse, pointed out that I am all of mom’s favorite people rolled up into one. That was a sweet thought – something I hadn’t thought of before.

Not today. The light was gone out of her beautiful brown eyes. In those eyes which once held kindness, joy, and sometimes a bit of mischief, today there was only a blankness, ambivalence, and a lack of recognition that goes deeper than the momentary blips I’ve seen thus far. I know that this is part of the disease process as Alzheimer’s claims more of her mind and beautiful spirit, but it’s still rough on the heart.

God, in His grace, knew I would need extra encouragement today, so He had prepared three special gifts for me.

The first gift was breakfast with Maureen, a friend I haven’t seen in a few decades. We met up at Hubbard Avenue Diner in Middleton and enjoyed one another’s company and two hours of sharing where our individual journeys had taken us over the past few decades of life. What a blessing.

My pastor met up with me in the parking lot at BeeHive bearing today’s second gift: encouragement in the form of a favorite salad he had purchased for me. BeeHive is under precautionary lock-down due to the coronavirus threat, thus the parking lot meeting place. Truth be told, the greatest gift was actually not the salad – it was his listening ear and being wrapped in a prayer in the middle of a parking lot.

Today was a mostly eyes closed kind of day.

God had my momma deliver the third gift. Mom hadn’t recognized me at all today, so this gift was quite unexpected. I was watching her blindly fiddle-footing around in her wheelchair when she sidled up to where I was seated and, without a word, took my hand in hers and began examining it and stroking it with gentleness. Patting my hand in hers, she looked into my eyes and let me see the love in hers.

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.

The Day Dad Disappeared

Journal Entry – August 3, 2017

The past few days Momma has been paging through the little book of remembrance prepared for her by the funeral home that oversaw my Dad’s funeral arrangements in 2008. While I was preparing breakfast for her this morning, she looked up at me from her place at the kitchen table, tipped the book toward me as she pointed to a picture and said, “Is this how Jerry looked?”

I leaned over the kitchen counter a bit and looked at the page. “Yes, that’s Dad. He’s very handsome, isn’t he?”

“I don’t remember him looking like this.” It was a great picture of Dad, so I wasn’t sure what to say in response. I decided I should gently inquire, “How do you remember him looking?”

My heart should have been ready for her answer. But it wasn’t.

Tapping her temple as if trying to jog a stuck thought loose, with a heaving sigh and disheartened look she added, “I can’t remember him at all. I mean, I can’t bring him up in my mind anymore.”

I quickly swiped the tears stinging at the corners of my eyes, and then mom added, “Really, I can’t. And it’s really terrible when you can’t remember something you know you’re supposed to, and feels even worse when you can’t remember someone you loved.”

As a caregiver and a daughter, I would like to be able to help Momma create new memories to make the ones that are disappearing less painful. The sad truth is, this disease called Alzheimer’s makes it impossible for her to remember whatever fun thing we do, or pleasant conversation we have today. But, by God’s grace, I will continue to do my best to help Momma resurrect good memories and create new memories to enjoy, if even for a moment.