barefootlilylady

Kerfuffle

kerfuffle

A kerfuffle is some kind of commotion, controversy, or fuss. If you read about a scandal in a newspaper, it could be described as a kerfuffle.

Kerfuffle is a humorous-sounding word for a mostly non-humorous situation: some kind of disturbance, scandal or mess. However, a kerfuffle usually isn’t 100% serious. People talking loudly in public could be making a kerfuffle. If a politician says something embarrassing by accident, it could cause a kerfuffle. Often, people use this word when they think people are making too big a deal of something, as in “What’s the kerfuffle all about?”

Kerfuffle.

This word just keeps floating around in my brain. The reason is not entirely apparent, but I just can’t stop landing on that word today. All day. Constantly.

I guess it’s a sign that I should write about it.

There does seem to be a whole lot of kerfuffle going on in the news today. The mere mention of the name “President Trump” can cause a kerfuffle between the best of friends. But that’s not the kind of conflict I’m thinking about at the moment.

In the world of an Alzheimer’s patient, repetitive thoughts are commonplace commotion of the already fragile mind. Life can be like a stuck record. My sweet Momma will get a thought in her head, then it will just keep circling in her mind, prompting the same question. To her, each time the thought comes around, it’s a totally new thought, keeping her mind in a constant state of commotion – a kerfuffle, if you will.

Sometimes it’s a worrisome thought about money. She’ll wake up in the middle of the night and wonder how on earth she is going to pay for her apartment. She does not remember that her bills are on “autopay” and she has social security, a pension, and a steady stream of investment income, so she’ll get up and search through her purse, her drawers, and closets looking for her money. Even with our constant reassurance, the question is never truly answered.

Sometimes Mom’s kerfuffle is in the form of a fear. Fear of water or the shower continues to be a problem. Even though she informs me that her head itches and she needs to wash her hair, there is no way I’ll get her in the shower without force. It’s just not worth the kerfuffle or (here’s another fun word) brouhaha.

My mind experiences kerfuffle when it’s time to sleep. My husband falls asleep within a minute of his head hitting the pillow, but my mind just refuses to find the “off” switch. My brain is too busy for sleep. I’ll be thinking about my to-do list, something that happened that day with Mom, something I should have said but didn’t, or shouldn’t have said but did, someone I need to talk to, what I’m going to have for breakfast, an idea to try…sometimes all of the above, and then some.

Sleep is one thing I’ve discovered caregivers really need…and really lack.

One nighttime kerfuffle fighter I have turned to in recent weeks is to meditate on a Bible passage as I’m settling down at night. I’ll read a passage I’d like to consider, then open my Bible app to that passage, turn on the narrator’s voice, turn off the light, then lay my head on my pillow and listen. God’s Word is a wonderful thing to ponder. A few chapters in and I’m in a restful sleep.

Sleep is good stuff. Even better is sleep nestled in God’s Word.

Meet My Brother

I’ve mentioned my brother a few times on my blog now, so thought I should reach back in time to almost a year ago where I introduce him on Facebook. I’m Brad’s health care power of attorney but, more importantly, his sister. So, I got involved in my brother’s business when it became very apparent to me that there was more than laziness keeping my brother living as a recluse in my mom’s spare bedroom. No work for 6 years (he’ll admit being lazy at first about finding work after losing a good job). No income and no ability to handle his own financial affairs. Diabetic, but doing nothing about it. No time spent with friends. Just sleeping, eating, smoking cigarettes in the garage, and watching TV.

One day in April of 2015 I announced to Brad that I was taking him to the VA to see if we could get him some help for some very obvious (to me) health problems. He was so sick and very willing to go. That began a year of uncovering and treating several significant health problems – including cancer – multiple cancers, one of which had already traveled to lymphnodes.

With the help of some pretty amazing doctors at the VA Hospital, Brad fought his cancers and won. But the fight was hard on his already frail body. It soon became clear he could not go “home” again. Brad has since settled in nicely in a skilled nursing facility near my home. Visits with the doctors at the Madison VA are not quite as frequent. We continue to routinely screen for skin cancer, treating when necessary. Because Brad is not a good candidate for another round of chemo and radiation, we are no longer actively screening for the return of colorectal cancer via invasive tests and medical imaging. We’re doing what’s referred to as “watchful waiting” – waiting for symptoms of cancer to return and planning to provide comfort care should his cancer return.

Facebook Journal Entry – May 2, 2016

Meet my younger brother, Brad. I would describe him as a generally laid back, genuinely nice guy. Single. Never married. Former trucker. His happy place in life is sitting around a campfire with a few good friends after a day of hunting or fishing. It has been a few years since he has felt well enough to be in his “happy place,” or anywhere besides his bed.

Lately I’ve been accompanying my brother to the VA hospital once or twice a week, sometimes spending an entire day there, depending on how many doctors he needs to see. My heart is filled with compassion for my brother. It has truly been a rough year for Brad. So many ailments and serious health concerns previously identified by the Milwaukee VA (Zablocki) have been addressed. Now, as we transition his care over to the Madison VA, Brad’s new care teams have been getting to know him – one clinic at a time: Retina Clinic, Geriatric Clinic, Dermatology, Oncology, Urology, Podiatry, and Neurology. Brad and I are very grateful for the fine care he continues to receive as a military veteran.

Profoundly grateful.

Today’s appointment was with his new neurologist; a straight-shooter who does not mince words. Nothing was sugar coated. Sometimes I would steal a glance at Brad to see how he was taking the brutally honest information. There was very little in the way of encouraging news today. I had mixed feelings; part of me wanted to cry, the other wanted to hug this doctor for his forthrightness and practical advice.

Brad has battled cancer courageously and without complaint. In this regard, except for some skin cancer yet to be excised, he is doing well. The sad news is that he will never regain the use of his legs. Diabetes and chemo and radiation therapy have taken their toll. No amount of physical therapy will help him regain the lost muscle mass. The wheelchair is, and will continue to be, his everyday companion.

It pains me to see my younger brother living in a nursing home. I want him to live with me and I want to help take care of him, but my house will not accommodate his mobility needs. Due to mom’s physical problems and her declining mental acuity, living with mom is not an option either. Thus, Oregon Manor is his new home.

Mom misses Brad too. Each and every day she hopes he is coming home to live with her. The mom in her wants to take care of her boy. Today, after Brad’s appointment, I brought him to Mom’s apartment for a little visit. Wayne prepared dinner and we sat down to eat together as a family. This meal together brought mom joy and gave Brad a different sort of dining experience than he has in the nursing home. Time with family. Precious.

After dinner and a brief visit, it was time to get Brad back to his abode. Together, we’re getting the hang of this transportation thing. I’m even learning to wrestle his wheelchair in and out of the trunk…not with the greatest finesse, but it’s getting easier. Our ride “home” was quiet. There was a lot for both of us to absorb following today’s visit. With Brad situated comfortably in his room, I left to go spend a little more time with mom. Once in the car, however, the enormity of the doctor’s words today registered in my heart and hot tears began to flow. It was another one of those moments in life where I knew I needed to pray, but the words would not come. But God knew what was on my heart and He heard my unspoken prayer.

The Comforter is here and He gives peace.

The Decision: DNR (do not resuscitate)

Within the past three weeks, I have helped two of my loved ones complete our state’s DNR form (Do Not Resuscitate). First it was my brother; next, my mother.

Mom’s mental clarity has been marginal (at best) these days. This morning she needed help completing the various steps within any task. For instance, when we brush our teeth, it’s all just one task. We don’t usually have to think about the process. We just do it. For the individual with Alzheimer’s, the decision to brush one’s teeth involves at least five steps: Continue reading “The Decision: DNR (do not resuscitate)”

Friends Read Between the Lines

According to Facebook, I have 498 friends!

I will admit. I really enjoy Facebook. I love keeping in touch with friends – old and new – via this social media phenomenon. I find it outrageously amazing that I can connect with a few of my “besties” – keeping tabs on their kids and grandkids via anecdotal stories, posted photographs, and funny videos. So many of my friends now live several states away, so every post they make invites me to share in their world. I can also catch a glimpse of what is going on in the lives of aunts, uncles, cousins, nieces, nephews and sundry shirtail relatives and family members I rarely see (and a few I’ve never really met in person), friends I went to grade school with (and haven’t seen in 45 years), neighbors who’ve moved away years ago…and the list goes on.

My own children are on Facebook. I assure you that this grandma loves to read their posts and see the pictures they share.

Yes, Facebook friendships are fun. But the best kind of friendships – true friendships – are those characterized by faithfulness. These friendships are truly priceless. I have more than my fair share of that type of friend, but let me tell you about two of my faithful friends who have blessed me immeasurably.

Paula & Shary — Paula and Shary – faithful friends

I’d like you to meet Paula and Shary.

We three went to the same church for years and years. We raised our families in the church together, grew in the Lord together, and shared the joy of friendship. Now we three live too many miles apart and rarely see one another. In fact, Shary finally had enough Wisconsin winters and moved to North Carolina! Last September, Paula hosted a sweet little luncheon in her Pewaukee home so that the three of us could spend time with one another while Shary was visiting in Wisconsin. It was as if we had never parted. The afternoon just flew by.

At the end of our afternoon tea, the three of us embraced in a little prayer huddle in the middle of Paula’s living room. My heart was so moved as each one of us took a turn lifting one another up in prayer. I tell you, Paula and I know there is no better feeling than being covered in the warm blanket of dear Shary’s intercessory prayer.

Paula and Shary have exemplified the title of “faithful friend” in my life. I cannot begin to tell you how much they have encouraged me in my journey of caring for my mother as she struggles with Alzheimer’s. These two ladies not only pray regularly for me, but they look for ways to be an encouragement.

Faithful friends read between the lines. They look for ways to be a blessing.

Shary “read between the lines” when she picked up on my comment about how much receiving mail means to my shut-in mother. Since then, every so often, Momma is delighted to open a beautiful card from Shary. Within each card is a sweet note and assurance of prayer. Mom reads those cards over and over again. Those cards keep on giving, as mom rediscovers the cards and rereads them again and again. Not only does Shary send cards, but even her daughter and grandchildren got involved at Christmas filling my mom’s mailbox with their love and best wishes.

Most recently, I made a comment on one of Paula’s Facebook photos (pictured). Having just recently played dominoes with my family using a set of dominoes that has a number of tiles with dots that missed being painted, I exclaimed on her post, “Wow, I would love those dominoes!! No more counting dots!”

My kind and thoughtful friend Paula read between the lines. Before I knew it, a package with my name on it was delivered to my doorstep. My very own set of no-dots dominoes just like the ones in her picture!

Tonight, I’m thanking the Lord for these two precious friends and their very encouraging acts of kindness. I praise God that these two ladies paid attention to the “nudging” of the Holy Spirit to bless me in these special ways. May the Lord grant me a faithful heart like theirs – one that seeks to bless others by reading between the lines.

Finding Joy

Facebook Journal Entry – February 2, 2016

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.

Brad spent much time as a patient here from April 2015 thru March 2016

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.

MomTeen — Mom as a teen in front of her girlhood home

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.

God’s Grace through Others

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.
VivsText 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 knew Viv 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.

VivsText2

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.

Hearing the Voice

Facebook Journal Entry – October 13, 2015

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.”

~ Philippians 3:20 (NIV)

Make Me a Blessing

Funny thing happened yesterday.

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.

ToenailClippers — A handy tool for at-home pedicures

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.

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

SillyHatSecretary — 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.

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.

Sundowners and Sleepless Nights

“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.

Out of the darkness, her voice continued, Continue reading “Sundowners and Sleepless Nights”