Before I Forget: Sharing my love for God, family, gardens and my sweet Momma
Wife of one, mother of 2+2, and Grandma of 6 (3 girls and 3 boys!) and full-time caregiver for my sweet Momma with Alzheimer's. Passionate about Jesus, grandkids, Awana Clubs, gardens, quilts and cooking.
Today could have been a very discouraging day. It seemed the Enemy was definitely intent on throwing into my path every obstacle he could muster as I tried to minister to my mom and brother.
It was obvious to me that from the moment mom awoke, her state of confusion was worse than I had ever seen it. As she stood in the middle of the kitchen of the home she and dad had built in 1962, she looked at me and said, “I’m really in a fog. I can’t remember where anything is. This doesn’t even look like my kitchen.”
My heart sank. Mom’s dementia was on the move again, claiming another piece of her short-term memory – and maybe even a little bit of her long-term memory as well. Together, we made it through the morning, enjoying one another’s company and figuring out life’s little dilemmas like, “Who took ALL the pens and pencils in this house?” Momma was now ready for one of her frequent naps.
While Momma napped, the next thing on my agenda was a trip to the VA hospital where my brother is a patient. My mission was to speak with the Social Security Administration (SSA) in a second attempt to set up an on-line account for Brad so I could help him apply for disability and monitor communications from home. [Last week’s previous failed attempt included getting “locked out” of his account and an unfruitful phone call to the SSA to unlock his account – a long story, complete with a one hour 20 minute hold time and a lecture about committing fraud where I was admonished that Brad needed to be present in the room while I was working on helping him.]
I arrived at the hospital armed with my generally trusty laptop and fully charged iPhone, parked myself at Brad’s bedside, and made the second call. Thankfully, our hold time was just 35 minutes and we were able to speak with a very kind and helpful representative named Brandon. In the end, even Brandon was unable to help me accomplish my goal, but he did assure us that we would be asked the very same questions at our phone interview on February 15.
Kind of frustrating. As frustrated as I was, I did recognize that even this situation was an answer to prayer. It was not the answer I was looking for, but a closed door is still an answer. I have every confidence God will open the right door in His time.
When I arrived back at Momma’s house, I was dismayed to find yet more evidence that mom was experiencing a very bad memory day. Mom was fretful and talking about “all the kids” who were visiting her yesterday. There were “so many” of them. According to mom, they were well behaved enough, but messy. She said she enjoyed spending time with each one of them, but now she was left to find where they had put all her stuff.
Sadly, there were no kids here yesterday…or any time in the last several weeks (unless you want to count her 55 and 58-year-old daughters in the kid count). Mom’s “stuff” was indeed missing. Not only were all of her pens and pencils missing again, but so was her checkbook, her shampoo, and nearly every Kleenex box in her home. Mom accused “the kids” of taking her stuff. She accused “those girls you hired” of stealing her Kleenex, complaining, “They should really bring their own.” She even accused me of using up her shampoo.
The truth is, the increasing paranoia of dementia makes Mom hide her own stuff. Her pens and pencils were tucked in her dresser drawer. The checkbook was in her purse where it belonged, but her purse was hidden. Her shampoo was sitting on top of her dresser, rather than in the shower. And the Kleenex boxes were stacked up in the corner next to her favorite chair.
Yep, it was definitely a very discouraging day. Thankfully, over the past several months, God has impressed upon my heart the need to look for joy in the midst of life’s difficulties. It’s always there. I sometimes have to look a bit harder, but I can always, always, always find joy.
Today’s joy was found in seeing my brother looking content and better than he has since Christmas. I felt it in his heartfelt “Thank you for all you’re doing for me and Mom, Cin.”
That little bit of joy would have been enough for me to treasure in my heart, but God had more in store.
When I walked in the door with arms full of groceries later in the day, I found Momma standing in the kitchen in the same spot where earlier in the day she had stood in a scary state of confusion. This time, I found Momma experiencing absolute delight having just received a phone call from Jean, one of her friends at church. Jean told Momma she was planning to visit her on Friday and she would be bringing Momma’s friend Bev. We added that special bit of joy to Mom’s calendar so Momma can smile every time she looks at it.
But God still was not finished. Momma had also received some mail – a very special Valentine from her very thoughtful sister. My Aunt Carolyn had also enclosed several old photographs from Momma’s younger days. Each picture evoked a crisp as can be memory and story for her to share with me. Incredibly special moments in time.
Thank you, dear God, for infusing incredibly difficult days with even more incredible bits of joy.
Getting my mother to leave her apartment for ANY reason is difficult these days. Mom had an appointment with her memory doctor on Thursday and I was very relieved it was Viv’s turn to get her ready to go. I told my sister she’d need to start about 2 hours beforehand, gave her a few tips, and warned her Mom would likely give her a little guff about the doctor’s appointment and ask where they were going about 50 times.
I was at home getting ready to leave the house to go out to lunch with my husband when I received this text from Viv.
It made me smile.
I wasn’t smiling because it was funny (well, maybe a little). I smiled because I knewViv knew. This experience had helped her better understand that taking care of our mom was hard…and that I need her help.
I know in my heart it’s not “me” doing this, so I sent Viv this reply text.
The appointment was just a routine check-in with her geriatric specialist to make sure all was well with regard to her Alzheimer’s medication regimen and to find out if there were any new concerns. I did have a concern. Mom had been complaining of difficulty breathing for a few days and seemed a little more irritable and confused. She always has troubles with her allergies, but this seemed different.
Sure enough, when the medical assistant took her vitals, she expressed concern that mom’s heart rate was only 44. That would be a good heart rate for an uber-athletic man, but not an elderly woman whose heart rate is usually around 68. I was pretty sure that the medication donezepil (Aricept) was the culprit. I didn’t think that the Aricept was providing measurable improvement, so wondered if we should discontinue it.
To be on the safe side, the nurse practitioner wanted to rule out heart problems. Orders were placed for blood tests, an EKG and a chest x-ray. Mom even got an escorted wheelchair ride as part of her ordeal. The medical assistant who pushed mom had the sweetest personality and threw me looks of compassion for mom as my sweet momma asked the same question at least five times between the doctor’s office on the 2nd floor and the lab in the basement.
Mom is mobility challenged and hard of hearing, so I suited up in a lead apron and helped my mom stay in position for the chest x-ray, using a loud voice to instruct “breathe in and hold” and “exhale” at the appropriate times. Then I answered mom’s questions as the technician got her hooked up for the EKG. Long story short: all is well with her testing. No A-fib, heart problems or stroke. The medication was probably to blame, so we were instructed to discontinue that medication, take her pulse daily, and visit her primary doctor in a week or two to reassess.
I followed Viv and mom out of the nurse practitioner’s exam room. As I stepped toward the door, I felt her hand on my shoulder. I turned toward her and saw a look of compassion. Her eyes were telling me, “I know this is hard. I’m here for you.”
I’m extremely thankful my sister was able to accompany us on this bit of the journey. As I have gotten to know other family caregivers along the way, I realize all the more how blessed I am to have a sister who is willing to help out a few days each month. Sadly, there are a lot of lone ranger caregivers out there who have zero support from members of their family.
Please. If you know one of these dear people, do what you can to bless them with your help and encouragement. Be God’s grace in their lives. They need it.
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.