About 30 seconds after wheeling her cart into her local Pick n’ Save grocery store, Momma abruptly stopped in front of the produce section and informed me she needed to take her hearing aids out. The clatter of carts, the din of voices, and incessant cash register beeping were just too much. She pulled each device out and carefully placed them in a little pouch we keep in her purse. With a look of great satisfaction on her face, she smiled broadly, and said, “Ahhhh! Peace and quiet.”
But, Momma’s quiet world isn’t always quiet. Occasionally, she’ll be sitting in her favorite chair and then suddenly wave her hand in agitation, as if shooing someone away. “Oh, be quiet! Go away!” she’ll scold. I’ll ask Momma who she is talking to and she’ll reply, “Don’t you hear him? He keeps singing that same song over and over and over again!” When I ask her to describe what she is hearing, she tells me it is a man’s voice and he’s singing opera. I hear nothing of the sort. But, Momma hears “him” quite often throughout the day.
I know a little bit about hearing repetitive sounds. I have tinnitus, a condition which causes both of my ears to ring with each beat of my heart. Every day – every night – ALL the time. Sadly, there is no cure. During the day, the noises of life all but drown it out. In the still of the night, only sleep helps me escape the constant noise. I shudder to think of having to listen to a man singing opera all of the time. Even if I happened to enjoy opera, that would be much harder to deal with than the phone that no one answers that I hear in my own head.
It is difficult seeing my sweet mom struggling with so many things in life. Mom has osteoarthritis – her knees and hands hurt a lot. Walking is becoming more and more of a struggle. Her short term memory loss becomes more pronounced each week – that in itself is heart breaking. Even with the aid of hearing aids, mom’s deafness is becoming more profound.
It’s the memory loss that seems to bother mom the most. Just today we were looking for her checkbook (again), a frequent activity. Those who experience short-term memory loss often have an associated paranoia. They think “somebody” else is moving their stuff…or, worse yet, stealing their stuff. So, they keep moving their stuff in an effort to hide it from the unscrupulous “somebody.” In reality, they’re hiding the items from themselves; sometimes very successfully.
Today I walked in on one of Momma’s searches for her missing checkbook. She was kneeling in front of the couch, lifting the little skirt surrounding the couch and peering underneath. The checkbook wasn’t there…but she found the cookies she hid weeks ago. Wincing in pain, Momma willed her arthritic knees to crawl closer to the sofa so she could use it to assist her in returning to a standing position. In excruciating pain and with tears rolling down her cheeks, I heard Momma say under her breath as she straightened her knees, “Jesus, please take me home soon.”
Though it made me cry inside, I found myself praying in my spirit along with her, “Lord Jesus, hear Momma’s prayer.”
Someday, perhaps very soon, Momma will hear the Voice of her Savior telling her, “It’s time to come home, Charlotte. I’ve been waiting and have a place ready for you.”
Soon, Momma, soon.
Update: Momma has reluctantly graduated to a walker and doesn’t carry a checkbook or wear hearing aids anymore, but she still hears voices. Dad has been in his heavenly home since May of 2008 but she sometimes “hears” him speak to her. She has a picture on her dresser of the two of them and occasionally asks me if I see his lips moving too. I even heard her scold him once and tell him to be quiet. The opera singer has apparently followed her to Fitchburg, much to her disapproval. And Momma still longs to hear the voice of her Savior and take up her new body and her citizenship in heaven any day now.
“But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.”
I was preparing supper in the kitchen while my mom and hubby chatted in the living room, when I overheard Mom say to my husband Wayne, “Are you a patient here too?” Wayne chuckled and responded, “No, I’m just a visitor.”
I had to stifle a laugh. It was so sweet. With that bit of in-house comedy came the realization that Mom’s perception of me as a caregiver (or herself as a “patient”) isn’t far from the truth. I may not have M.D. or R.N. following my name but, the fact remains, I do provide care.
In the course of my day, I was her “nurse” as I managed and dispensed her medications, her nurses aide when I helped her get cleaned up following an accident (then disinfected the bathroom), and her live-in dietitian when I made sure she ate food more nutritious than potato chips and ice-cream. Add to that the daily task of constantly helping my sweet mom with the mysteries of life (e.g. “Where’s my purse?”) or helping her remember the things we take for granted, like where the bathroom and bedroom are located.
When midnight rolled around, I was tuckered out and already in my makeshift bed (mom’s couch), but suspected my care-giving wasn’t quite over for the day when I heard the distinctive sound of mom grunting as she pushed her walker from her bedroom. She called out into the darkened living room, “Cindie, do you know where my toenail clippers are?”
“Yes, mom. Do you need help with something?”
Mom took a seat in her favorite chair just a few feet away, then switched on the tablelamp. Blinking back the abrupt brightness, I could see she was holding one shoe in her hand. Apparently her toenail was bothering her inside of her shoe and she was just not going to get any rest (nor would I) until that problem was remedied.
Like many elderly people, mom’s nails are very thick. A bit much for her arthritic hands to tackle. Taking my nailcare kit in hand, I sat on the floor with her foot in my lap and became her podiatrist. After clipping her bothersome nail, I trimmed a few others then lotioned her foot.
Momma loved the toenail TLC from her live-in care-giver and soon shuffled off to bed yet another time. Thankfully, she slept for 8 hours straight…and so did I.
Sleep seems sweeter when you know you’ve been a blessing to someone else.
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
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.
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.
“Hi, Cindie!” said Momma with more brightness in her voice than a live-in caregiving daughter hopes for at 1:52 a.m.
“Hi, Momma,” I groggily responded as I peered into her bedroom doorway. “What are you up to?” The soft light from the streetlight outside mom’s bedroom window snuck in a bit through the slats of her blinds, allowing me to see her distinctly hunched form in silhouette as she sat in the dark on the edge of the bed.
Math has never been my strong suit. My earliest memory of my aversion to mathematics goes back to grade school. Details are fuzzy, but flash cards and standing with chalk in hand at a blackboard with snickering classmates behind me were involved in the torture. No amount of remedial help or after supper tutoring from my dad could erase the ill feeling of dread and fear whenever our teacher would stand in front of the class with a stack of paper and ask us to put our books away and take a pencil out of our desks. I can still picture her walking up and down each row of evenly spaced desks, placing a sheet of paper face-down on our desks, instructing us not to turn it over until she gave us permission. The only thing pleasant about the dreaded math quiz experience was the strangely pleasing pungent aroma of the alcohol (spirits) on the fresh, purple-inked quiz paper freshly printed on a “spirit-processed” Ditto machine (now I’m really dating myself).
I dreaded getting my paper back after my teacher graded it too. That purple ink on the page would more often than not be accompanied by numerous red check-marks next to each wrong answer. Oftentimes, right next to the grade at the top of the paper, there would be a little note from the teacher that said “See Me” or something like that. It was embarrassing to never quite “get it” when everyone else around me (so it seemed) was catching on just fine.
In marriage, opposites often attract. My husband enjoys math. It’s probably not an exaggeration of facts to say that
playing with numbers brings him great satisfaction. On a related note, he truly enjoys spreadsheets. Creating them. Updating them. Analyzing them. Sharing them. He’s the type of guy that looks at pieces of information and says with a smile, “Hey, let’s build a spreadsheet for that!”
While I struggle with remembering which credit card to use in each purchasing situation, drag my feet at keeping spreadsheets updated, struggle with understanding investment principles, and chafe at always being asked for receipts for updating those spreadsheets, I can be thankful my husband is strong in those areas. His love of managing details means we can pull up a piece of needed information with a moment’s notice when caring for my mom and brother. It means he is a natural choice to be their financial power of attorney (a job I very willingly relinquish). It means our own budget is always balanced. Our retirement investments always well-tended and growing. Our bank account never lacking. Our vehicle and home maintenance always scheduled at appropriate times. Our emergency fund always available. Our taxes always done on time and without error. Our giving always done wisely and with generosity.
This post is another in a series of my Facebook posts from 2015 related to caring for my mother. It’s really hard for me to re-post it without shedding my own tears. Those who are walking alongside a loved one struggling through the various stages of Alzheimer’s will probably relate very well. By the time you realize that the momentary lapse of memory is something more than the natural aging process forgetfulness, hints at “forgetting time” or how to tell time have already begun.Continue reading “Forgetting Time”
It was therapy. It was love. Inspiration. Repose. Edification. Heart-to-heart sharing.
Today my hubby took a turn hanging out with Momma so that I could get away for a few hours to take my second Chinese watercolor lesson. Truth be told, it was much more than a painting lesson. Much, much more. Continue reading “Art Therapy”