One word prompt sent to a community of bloggers. Five minutes to write about it. Unedited. Don’t think too hard…just write. The Five Minute Fridayword prompt this week is LAUGH. Ready, set, go!
I heard my dad laugh this week. It took me by great surprise, because dad went to his heavenly home in 2008. But, there it was – that familiar laugh. It started with an under the breath “heh-heh-heh” that morphed to a jolly, tummy-jiggling chuckle, and ended with a loud, throw your head back, “Ha!”
It happened when I was paying my brother a visit in the nursing home where he resides. I usually stop by after work and bring him a home-baked cookie and his favorite peach ice-tea. He doesn’t talk much, but he’s always glad to see me.
Brother & Sister
There’s a nice comfy chair in the corner of Brad’s room right next to his bed. I plop my work-weary self in the chair, kick off my shoes and prop my feet up on the edge of his bed, then sit with him for a few minutes to watch whatever he’s watching on the television. It’s usually an episode of Blue Bloods, but on this day it was a funny movie. It was during that tv-watching moment when I distinctly heard my dad laugh.
I write from my experience of caring for my sweet mother in her later years with Alzheimer’s. I hope that what I write will be an encouragement to those who are caring for someone they love.
Before you read this post, you might want read the A-Z Caregiving Tips (pictured below) which inspired me to write about my own experience related to these tips.
A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. I have already presented my experience with tips A – I, so let’s move right on to my take on J, K & L.
J just redirect me pleasantly if I keep repeating myself.
When memory loss becomes apparent to family and friends, it’s the repetition of stories which oftentimes raises the warning flag that something is amiss. Mom had several stories that would frequently replay. There was one she would tell about why she loves ice cream. Other repetitious stories related to how she acquired some of the items she owned, including three blue flowerpots and a purple tablecloth. I loved each of the stories and, as I mentioned in my last post, now I wish I had recorded her telling them.
Now, there’s nothing wrong with telling family stories around the dinner table. We all do it. It’s one of the best parts of gathering around the table for a shared meal. But, when the same story keeps looping during the same meal, that’s when things get a little tricky. It’s easy to hurt our loved ones by saying, “You already told me that a hundred times, Mom!” We’re tempted to roll our eyes and inwardly groan, “Oh no! Here we go again.”
That is where the art of pleasant redirection comes into play. In the world of dementia caregiving, there are many opportunities to practice this act of gently helping a forgetful loved one refocus their attention on something else.
My granddaughter provided one of the best examples of gentle redirection that I have ever seen. My mom found my to-do list on the kitchen table. Thinking it was her own list, mom kept reading the list over and over again, worrying about getting it all done. Violet (who was probably 12 years old at the time) brought a photo album to the table and sat next to her great-grandmother. In one stealth move, Violet opened the photo album and placed it in front of her GGma as she simultaneously slid the list away from view. Then she started paging through the album and talking about the photos. My Mom’s worries melted away and she was immediately engaged in this new direction of thought.
In fact, photo albums and picture books are one of the greatest tools in the toolbox of dementia redirection.
Sometimes, mom would ask the same question repeatedly. One such question had to do with her finances–something she couldn’t handle on her own anymore, but continued to worry about. My husband handled her finances for her and greatly helped alleviate this worry by creating a single page monthly statement which listed all of her financial bottom-line numbers in one place. Mom could read this over and over to her heart’s content. [I explained more about this in Alzheimer’s and Money Worries, which may be of help to anyone going through this stage with a loved one.] If mom was having a fretful moment about money, we could hand her this statement, which we kept on a clipboard. She would sit and read (and re-read) it for a very long while and would often comment about how helpful it was to her.
K Know that closing my eyes may be me trying to find my words.
Word finding is one of the earlier struggles I noticed in my mom’s journey with Alzheimer’s. It’s a problem I am wrestling with these days too. I have noticed that when I am struggling to figure out which word I want to use during a conversation, my family and friends will often provide the word for me during my long pause. Most of the time I appreciate the help; other times it just deepens my awareness and the inkling I have that my later years of life are headed in the same direction of memory loss that my mom experienced.
In fact, photo albums and picture books are one of the greatest tools in the toolbox of dementia redirection.
I don’t remember mom closing her eyes when she was trying to think of what she was going to say–at least not in the earlier stages. I remember that she would avert her eyes upwards and away, as if she was searching the corners of her mind for what she wanted to say. I do this too. I have also noticed something in my own pause to search for the words. By the time I’m ready to add my words to table talk conversation, the direction of the conversation has moved on to something else. It’s frustrating, but it reminds me of something important when engaging in conversation with my memory-challenged friends at my workplace. Don’t be in such a rush–wait for them to answer.
L Listen with me to music and dance tunes.
Mom would rather sit quietly and read a book or magazine than dance or listen to music. It’s not that mom didn’t like music; rather, her hearing deficit made listening to music more than a little bit challenging. While this point doesn’t apply much to my mom, it does bring to mind my work place. I work as a baker in an assisted living memory care home and am sometimes surprised by the music being played in the background for our residents. Sometimes I think the music chosen reflects the preference of the caregiver on duty, rather than the tastes of the generation being served.
The other thing I’ve noticed is that the radio or television in our care home is oftentimes playing too softly. The younger folks who work as the caregivers don’t seem to take into account the need for extra volume in this older population. Nor do we pay enough attention to what is being broadcast on the television in our common spaces. It’s much better, for instance, to choose a classic movie from the era in which these folks lived, rather than a talk show featuring four women arguing their views. Better (in my opinion) to choose a nature show over a scary, blood and guts movie.
Don’t get me wrong–our care home is fantastic and is blessed with a number of great caregivers. But, there is one caregiver who I find to be absolutely delightful. She will put on music the residents love and engage in a little song and dance. She’ll even make up her own tune or sing a familiar jingle, even if she’s just passing through the room on her way to her next task. If they’re having an exercise class, she’ll join in and spread her own brand of love, laughter, song and encouragement. Marnie makes the residents smile (and me too).
The world of memory care caregivers needs more Marnies.
Now that she is no longer here to tell her stories, how I wish I had recorded her voice as she reminisced about her life, and how I wish I had written down those stories she shared. Her stories were part of my life’s story too.
Before you read my post, you might want to take a peek below and read the list of A-Z Caregiving Tips which inspired me to share my own experience related to these tips.
A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. I have already presented my experience with tips A – G, so let me jump right in where I left off.
H Hear my stories from long ago attentively.
I treasure the rocking chair my husband bought for me in celebration of the birth of our first child. When I walk past it, I sometimes run my hand across the back of the chair and give it a gentle nudge to rock. Sweet memories of rocking my children to sleep or to soothe their tears come to the forefront of my memory. Funny thing is, as often as I rocked my babies, I don’t remember when the last time was that I rocked them. That’s because it happened when I didn’t see it coming.
Photo albums sometimes prompted some of mom’s many stories–some true, some a confabulated combination of true events and a good imagination.
Similarly, there came a time when my sweet mother told each of her oft-repeated stories from her childhood for the last time. It was so easy to tune them out over time because I had heard them so many times. I find grace in knowing that I really was tired and trying to juggle too many things, but oh how I now wish I had taken more time to listen with my heart. Now that she is no longer here to tell her stories, how I wish I had recorded her voice as she reminisced about her life, and how I wish I had written down more of the stories she shared. Her stories were part of my life’s story too.
I Invite me along on community and church gatherings.
Just as the stories our loved ones tell will one day come to an end, so too will their desire to be social. I’m so glad I carved out time to take my mother on a few road-trips “home” to visit her family in West Virginia and Ohio.
Only God knows the measure of our days.
Even though she was in the early stages of memory loss, traveling with her wasn’t easy, but the effort was rewarded many times over as I observed her quiet joy as she spent time with her family (and mine).
Mom was a woman of faith who served the Lord with gladness as long as she was able. The day did come in the fall of 2015 when, for safety sake, I needed to take her car away (I didn’t earn any popularity awards with that decision). Mom’s need for fellowship with her church family was still strong, so I’m thankful for Mom’s friend Jean, who would take mom to church with her whenever Mom was willing and ready. Mom’s ability to measure time and take cues from what was written on her calendar gradually disappeared late in 2015. Sadly, when Mom’s ability to remember the names of even her closest friends diminished, so too did her desire to attend church. Her “last day” attending church happened when we weren’t expecting it either.
Love this picture of mom saying, “Say CHEESE!”
While mom no longer had the desire to go places, I noticed there was still a glimmer of joy when people would come to visit. I soon discovered that the most loving thing I could do for her was to invite family and friends in. Just a few at a time, so as not to overwhelm her.
Mom enjoyed the times when all three of us kids were able to be with her. She didn’t remember the visit for long, and it would usually tucker her out, but the momentary joy was worth the extra effort of finagling Brad’s wheelchair into the house.
Her church family was fantastic – she loved the visits from her pastors and friends who would stop by. Her eyes would light up when her grandchildren (and especially her great-grandchildren) would come for a visit. One granddaughter would bring dinner and her family every Sunday night. One grandson came every chance he could, bringing his girls with him. All of the visiting grands and great-grands would spend time doing whatever she enjoyed: coloring, sorting colorful buttons, working a puzzle a half-dozen times, and such. My sister Vivian would come every other weekend or so to help me out, sometimes bringing her youngest son. Mom dearly loved her family, even if she didn’t always comprehend that we were her family.
My encouragement to fellow caregivers is to make sure you make room for family and friends as often as you can.
We rarely know when time spent with a loved one is the last time. Last times happen in life when we aren’t looking. Only God knows the measure of our days.
Today I complete another trip around the sun. Most people get a little forgetful as they age – you know, the searching for the glasses perched on top of the head sort of thing. As I now approach the middle of my sixth decade of life, I am keenly aware that I am spending a tad bit more time looking for mislaid things, and much more time trying to figure out the names of people whose names I should remember. My sweet mom had Alzheimer’s in her later years of life, so I will confess that my own little forgetful moments cause me to think about what may be down the road for me. I suspect the day is coming when my memory will fade, and perhaps gradually vanish.
I write this post for any of my readers who are faced with loving and caring for someone they love who has heard their physician say “Alzheimer’s” when delivering a diagnosis. My dear family, I especially write these words to help you in the event that I someday hear my doctor say that dreaded word, or any other diagnosis which spells memory loss and dementia. You will likely need to make many hard decisions on my behalf – like taking away my car keys and deciding when it is time for me to live somewhere else. You were there when I made those difficult decisions on behalf of my mom and likely remember how hard that was for me. Take heart, God will give you wisdom for each decision and shed light on every step you need to take.
If I get Alzheimer’s, don’t ask me to remember; instead, reminisce and tell me stories from our past. What do you remember that we did together? Tell it again and again to me.
If I get Alzheimer’s, and I perchance do tell you a story from my past (or yours), you might want to write it down or record the story I’m telling you. I may tell you that story over and over and over again, just like your grandma did. Do you remember her talking about how she made her blue flower pots when she was in West Virginia, or how she dug the purple tablecloths out of the trash, or the stories about her wedding day? Just remember that the day will come when I will tell my story for the very last time and you will one day wish you could hear me tell it once again.
If I get Alzheimer’s, I might stubbornly refuse to bathe. The fear of bathing is the sad and stinky reality of this horrible disease. There might be a lot of fussing and crying, so let me tell you right now that when this time comes, you might find that hiring someone to help a for a few hours a day or two a week will be just the thing.
Tip: You might also find that dryer-warmed towels, blankets and clothes will calm my anxiousness. If all else fails, those disposable washcloths you can warm in the microwave are wonderful.
If I tell you I am cold, more than likely I truly am cold. In Alzheimer’s, the part of the brain which regulates body temperature and thyroid function goes kerflooey. Rather than subject yourself to turning up the furnace year-round, when you help me get dressed, start with a soft sweatshirt, then add lighter layers and keep soft blankets and throws handy.
If I get Alzheimer’s, I probably won’t remember to brush my hair. Will you please do it for me? Please use a detangling spray when you brush my mane of hair. I use a detangling brush, working from the ends and then all the way up to gently coax the tangles out. I like my hair long, but cut it short if you must. I might be mad at first, but will likely soon forget what once was.
By the way, if I tell you my hair hurts, I am not confabulating or telling a fib. When my hair gets dirty, my scalp truly hurts. It feels like bruises on my scalp, so please try to keep my hair clean. Perhaps a weekly trip to the hair salon for just a wash will be just the thing.
If I get Alzheimer’s, it might be challenging to keep me occupied, so here are some ideas for you to try. Gardening is my happy place, even if it’s just my own blue pot or three, encourage me to play in the dirt as much as I possibly can.
Donning Momma’s Gardening Hat
I also really love to work on puzzles, and might enjoy working on one with you.
Oh, and I like crafts. I once helped my grandkids create things with beads and paint; maybe, in time, it’ll be their turn to help me.
Baking was a joy to me when my mind was clear, so I might enjoy helping you in the kitchen. Even though I am old, remember that my mind is becoming child-like. What can a child do to help? Perhaps I can stir the batter, whisk the eggs, or pour in the bag of chocolate chips.
I could set the table, dry the dishes and wipe off the countertop. It won’t be perfect, but I will feel like I have made a contribution. It’s very important to feel useful.
If I get Alzheimer’s, remember that I’m a blue-jean wearing momma who likes pretty knit tops – ones with interesting details like ruffles on the sleeves and pretty buttons and lace. When you buy clothing for me, I suggest you buy two of each of my favorites. This will help you cope with me when I insist on wearing the same shirt over and over again. Unless you’re handy with a sewing machine, you might even want to buy two in the next size down, as those with Alzheimer’s lose interest in food as time goes on.
Perhaps you have noticed that I practically live in an apron. I wear one in the kitchen, while I’m cleaning, or when I’m gardening. If I get Alzheimer’s and the day comes when I become ‘messy momma’ at meals and perhaps need a bib, you might spare my dignity and try an apron instead. If I need to graduate to a bib, please make me some pretty ones…with lots of flowers.
If you can’t get me out of my pajamas in the morning and I stubbornly refuse to get dressed, just put on your pajamas and declare it “Pajama Day”! Conversely, if at day’s end I refuse to put on my pajamas, please remember that there’s no harm in wearing my clothes to bed. Unless the clothing is soiled, it truly isn’t worth the battle.
Dear family of mine, you know that I love the Lord with all of my heart and go to church every Sunday. If it is within God’s providential plan that I get Alzheimer’s, may I ask you to please take me with you to church for as long as I am able? It will do my heart good to gather and worship with my family and friends. One day you may find that I fidget too much or speak out of turn, then you will know it’s time for me to stay home with a caregiver while you go praise and worship our Lord, fellowship with your friends, and feed your soul. I’m God’s child and He will be near, whether I’m at church or at home, so don’t feel as though you are leaving me alone.
If I get Alzheimer’s, help me stay in touch with friends, be they old or new. I loved to have family and friends come for dinner. Much like your grandma did, I would probably enjoy company, but may get overwhelmed with crowds, so make it just a few. They may not understand what is happening to me, so gently explain before they come.
Remember how I used to take a photo of your grandma with her guests (or snag one off of Facebook), then give her the card to hang onto when her guests arrived. I would add their names and how she knew the people, then laminate the cards. It helped her remember their names. Maybe it would help me too.
If I get Alzheimer’s, please get me outside as often as you can. I always enjoyed walks in the park, so you might try that again. Push me in a wheelchair if you must, but let me enjoy nature and a bit of fresh air for as long as I’m able (and willing).
If I get Alzheimer’s, one day, you may find, I’m terribly unwilling to leave the house where I live. Going outside may become a terror, rather than a joy. If that day comes, try to create a comfy spot where I can sit near a window and enjoy the beauty of flowers and trees planted nearby, or a grandchild-painted birdhouse within view where a sparrow family might keep me occupied with their comings and goings.
Mom’s Little Patio Garden
Momma happily engaged in coloring
If I get Alzheimer’s, you might like to know that I love to listen to music and would enjoy Christian radio. But if I’m anxious, you might find instrumental piano or guitar will help me to relax. I especially enjoy listening to great hymns of the faith. You’ll find what I enjoy on my Spotify and Amazon Prime music collection.
If I get Alzheimer’s, please remember my children and grandchildren are especially dear and I hope they will visit when they are near. If they can’t come to love on me, please tell them to send me cards and sometimes include a photo for me to treasure.
If I get Alzheimer’s, I might like to carry a purse even though I don’t carry one now. When memories no longer stay tucked away in my mind, a purse might give me a handy storage space where I can pull out special memories any time I like. You might want to tuck a few of my treasures inside: little photo books filled with family (be sure to label who is who), something to color and an array of colored pencils, little books of flowers and butterflies to help me enjoy the things God made. Oh, and finding milk chocolate or a cookie in my purse would be especially nice.
If I get Alzheimer’s, the day may come when watching television is my thing. I really enjoy mysteries, but nothing super scary. Put on a gardening show or gentle children’s programming and I think I’d be content. I don’t like to watch television alone, so would you occasionally sit with me?
One more very important reminder. If I get Alzheimer’s and ever forget your name, please know that my heart still loves you and someday (sooner than you realize), the day will come when God will take me Home and make all things new, including my memory of how special you are and how very much I love you.
Even on nights when I am weary and tired, I sometimes have trouble falling asleep. Other times, I fall asleep, but cannot stay asleep. My trouble with insomnia probably stems from being on the plus side of 60; but, I think the main problem is that my mind just keeps whirling with thoughts long after my head hits my pillow. In my search for a remedy, I read about a sleep tactic whereby you count backwards from 50, mindfully counting each breath. Breaths are slow and measured – one deep breath in, hold a few seconds, then a slow breath out. I thought it couldn’t hurt, so I tried it. Lo and behold, it seemed to work, as I don’t recall ever getting past the 20’s on my way to zero.
One recent evening, as I completed my requisite bedtime routine of pillow-punching and fluffing, I decided there might be a more meaningful way to spend my countdown to sleep. Rather than pay close attention to the ins and outs of my breathing, I decided to pray about things that were on my heart as I counted forward, rather than backward.
That night, I prayed for the things God brought to mind: a missionary our church supports, my Christian brothers and sisters in Christ who live and serve in India, my children and grandchildren, my brother as he recovers from surgery, my husband’s various ministry endeavors, my pastor, the friends who are looking for work, and several friends with health needs. As I poured the concerns of my heart out to God, I remember taking my sweet mom’s name before the throne as well, asking God to take her gently Home to heaven in His time. Even though I knew I would greatly miss her, I longed for God to rescue her from a body and mind trapped in the clutches of Alzheimer’s.
One by one, my requests were heard by my heavenly Father, resulting in a heart that was quieted by this little bedtime prayer and praise time. Tucked in my bed and nestled under a blanket of God’s peace, eyes closed in prayer were soon closed in sleep. Something tells me my Heavenly Father didn’t mind one bit when His sleepy child fell asleep mid-prayer.
A few summers ago – 2015, I think – I was sitting on the ground pulling weeds from my front flowerbed when a sweet kitty crawled into my lap. Kitty had me from its first contented purr as I pet his head in response to his gentle head-butting insistence.
The next day, kitty showed up again while I was sitting on the porch glider taking a rest from puttering around in the garden. He hopped up on the glider and then crawled into my lap, kneaded my gardening apron, then did that circular little dance kitties do when they’re about to claim their favorite sleep spot.
I remember thinking, “I think this kitty just chose me as his person.”
One morning I woke up and saw kitty sleeping on the glider. That didn’t look very cozy to me, so I put a folded blanket on the glider for him. Later, I opened the front door to go sit with kitty and noticed that kitty had left a little present on our welcome mat. It was small, furry, and had a tail…but didn’t have a head anymore. It was obvious kitty had chosen us as his family, and had given us the gift of his leftover prey as a token of his devotion. He would continue to give us similar presents several times a week.
Wayne fell for the benevolent kitty too and began leaving food for it on our porch. People food and kitty food weren’t his favorites; Kitty much preferred his food…ummm, fresh.
Now Wayne had a very devoted fur-buddy, who literally followed him everywhere in the yard. Unfortunately, Wayne is very allergic to cats, so we couldn’t bring this stray kitty into our home. Kitty didn’t care – in fact, he seemed to prefer romping around in the great outdoors. He just kept showing up on our front porch, peeking in the front window meowing at us to come out and pet him.
The neighborhood scuttlebutt was that this stray cat had once belonged to a nearby neighbor on the street behind us. Word had it that they moved back to India to be closer to family and left kitty behind.
We named our new porch kitty Smokey because his pretty gray fur had little white stripes that resembled little whisps of smoke. We sometimes called him a “her” because we didn’t REALLY know. If you read my Facebook posts about the cat over the past four years, you’ll see I bounced back and forth calling it a he or she, him or her, and spelling its name “Smokie” or “Smoky,” or “Smokey.” The cat never seemed to mind my indecisiveness, but our veterinarian friend later confirmed it was a neutered male, based on what he didn’t see…and because he had a broader face and deeper ‘meow’ more typical of male cats.
Our family got in on the kitty lovin’ too. Our daughter gave us a rabbit hutch she was no longer using. Wayne painted it the same color as our front door. It fit perfectly in a sheltered corner of the front porch right by the front door. I filled it with old towels and blankets and our Smokey moved right in.
I stopped at Goodwill and bought the kitty a little divided food dish. But, the next thing we knew, we were buying things on Amazon for the cat. Food, of course, as he had now been won over to having most of his meals coming out of a bag. Since he would be an outdoor kitty, a heated pad to keep him warm in his little house during Wisconsin’s nippy winter weather was next. Of course, he also needed a heated water bowl too. And a brush.
Some people have a dog to greet guests at the front door. Not us. Our kitty startled many a guest by popping out of his house as they rang our doorbell. Our mailman LOVED our porch kitty and lavished lots of attention on him whenever he’d deliver a package. The grandkids loved to sit on the glider and brush or pet him. He even kept my sweet momma company when she’d occasionally sit with him on the glider and brush him, or talk with him through her bedroom window.
This past week, we noticed that Smokey didn’t eat his breakfast. No worries. His appetite has grown smaller as he has grown older – and he still sometimes prefers to catch a fresh meal once in awhile. Wayne went out to fill his dish at suppertime and found that his breakfast still hadn’t been touched. Now, that was a bit odd. Come to think of it, Smokey hadn’t been hanging out in his little home all day. I took some clean blankets and towels (fresh from the dryer) out to his house. Smokey usually comes running when I change his bedding and will hardly let me get the new bedding situated in his cozy house before he crawls in and makes himself at home.
He didn’t come. In fact, he didn’t come home all weekend. He’s still not home. Sadly, we know in our hearts he isn’t coming home again.
So, goodbye sweet Smokey kitty. We hope you found a nice cozy spot to lay down for your final sleep. We miss you already. We loved being your family. Thank you for choosing us.
At my sort-of-annual physical, my doctor asked me questions related to my caregiving responsibilities, which led to questions related to my mom’s diagnosis of Alzheimer’s. One of those questions was, “Does your mom still know who you are?” It’s a good question – one that is a little hard to answer. I usually start with, “Yes. And no.”
Most days I think she knows that I am family. Her face still lights up when she sees me. She knows that I love her. I don’t believe she usually thinks of me as her daughter though, as she usually refers to me as her mom, and every now and again her sister. Other times (this is my favorite), her best friend. Last week, though, she came up with an entirely new one that tickled my funny-bone a bit.
Mom’s hospice nurse was giving me an update when my sweet mom wheeled herself up to where we were seated and apparently decided she had better make some polite introductions. Speaking to her nurse she said, “This is Cindie. She’s my longtime neighbor.” Of course, her nurse knew the truth of the matter, so we both just smiled and agreed with my mom. Mom reached for my hand and brought it closer to her, then placed her hand over mine and said, “Right? We’ve known each other forever. We go waa-aay back, don’t we?”
So stinkin’ sweet.
“Yes, Charlotte. We go WAA-AAY back.” With a twinkle in my eye I added, “In fact, I think I’ve known you my WHOLE life!”
Let me introduce you to Violet. This granddaughter has held my heart for 15 years now and I am quite certain she has a special place for me in her heart too. Any time we spend together is special.
Not only does she love me well, but she also has a special softness in her heart for her memory impaired great-grandmother. Violet goes out of her way to be a bright spot in my mother’s day as often as she is able. Most recently she wrote a few letters to her and asked me to slip them in her purse every now and then so she had something new to read. On other occasions she will come with me to visit her GGma.
Violet and I share in common a love for writing. I love reading what she writes and especially love finding her thoughtful notes sprinkled liberally throughout my house. On a recent visit, Violet picked up a pencil and a notepad and poured out some thoughts on paper about Alzheimer’s. I asked for permission to share them on Barefoot Lily Lady.
Alzheimer’s By Violet Cynthia Schultz
Family becomes strangers ‘Home’ becomes lost Books become confusing Memories become a maze. Guests become intruders Flowers become weeds Shouts become whispers Old stories are forgotten making them new again.
Yet the smile of a stranger can still brighten up the day Help from a friend becomes a blessing when you’re lost. The old photo album jogs memories new and old. The surprise intruders become a highlight of the day. The countless weeds spark the old passion of gardening And the whisper of a voice ensures comfort, rest, and security.
The past few days have been especially wonderful. Even though it sometimes felt like I was always cooking, having our kids and grandchildren gathered here and being surrounded by family refreshed my spirit.
Three nights in a row of good sleep didn’t hurt either.
Yesterday, our children, along with our three lovely granddaughters, lovingly came alongside us in support of a decision that Wayne and I had already prayerfully made. A spot in a lovely memory care home has opened up for my mother. Together as a family, we acknowledged that my mom deserves to receive the 24/7 care I can no longer give her.
This has been an especially hard decision for me, as it has always been my desire to walk Momma all the way “Home” here in our home. Now that mom is under home hospice care, it seemed like we were almost there. But God has given our family wisdom and showered me with peace in the midst of my tears.
Last night, Mom was out of bed before our Friday date night caregiver left our home at 10:30 p.m. Bless sweet Kathryn’s heart, she tried so hard to get mom to bed and asleep before her shift was over. It was not meant to be. Sleep would not come for Momma until a few minutes before 5:00 a.m.
Today I’m feeling physically worn out and emotionally spent. The frustrations of my sleepless night and my groggy, bone-weary body served as confirmation that the decision we made as a family is the right one.
Nine days from now it will be different.
Round-the-clock care will be available to redirect my tired and anxious mother back to the safety of her bed while I am sound asleep in my bed a few miles away. There will be no more trips up and down the stairs between my bedroom and hers all night long. No need for cameras and a video monitor to keep tabs on Momma. No need for baby gates, a multiplicity of grab bars, wheelchairs, walkers and bedside potty chair. Someone else will vigilantly monitor and carefully dispense drugs, change and launder soiled clothing and bedding, cajole her into bathing (and washing her hair), and keep her from wandering away.
I find comfort in the hope of being able to attend school concerts, participate in church activities, go to the gym more regularly, travel with my hubby, take an unhurried bath, have impromptu play dates and sleepovers with my grandkids, and play in garden dirt whenever I want. The list of all the things I’d like to do now is very long indeed.
As much as I look forward to finding our new normal, I also understand the transition will not be easy–for her or for me. The tears which trickle down my cheeks without warning remind me that I will miss taking care of mom. It has truly been an honor and a privilege and the hardest thing I have ever done.
As my dear mother’s struggle with Alzheimer’s grows increasingly difficult to manage, it is becoming harder for me to leave the house for any length of time. While my hubby is very capable and always willing to help in many ways, sometimes the help mom now needs is very personal in nature. For this reason (and many more), it’s such a blessing to have a daughter who lives nearby who often helps her grandma when I need to be away. I recently had to take my brother to the doctor and the timing of the appointment didn’t work out for Beth’s schedule. Thankfully, my friend Rita was more than willing to help.
Rita – the hands and feet of Jesus
It would be my heart’s desire that caregivers everywhere had someone like Rita in their lives. Someone with the ability to read between the lines. A friend who puts their own life on hold in order to be a blessing. Seriously, if I post something on Facebook or my blog about being tired, I can almost guarantee that shortly thereafter I will hear the “ding” of an incoming text and it will be Rita offering to help look after Mom.
Just last week Momma was having a very hard evening. I had called hospice to let them know that she was having high levels of anxiety and breathing difficulties. Before I knew it, two hospice nurses were at the house helping me with her needs. Toward the end of their visit, I noticed a familiar look on Momma’s face and a slight slump in the way she was sitting. I told the nurses that it looked like Mom was going to faint. And faint she did – she slumped over hard and for a much longer period of time than her usual syncope episodes. Even though I’ve been through this several times now with mom, this one felt a bit different and, I must admit, this time was a little scary.
Unbeknownst to me, in the midst of the ordeal, my hubby Wayne put out a prayer request on our church’s Facebook group and several in our church family began lifting her name up in prayer.
We had a hard time getting Momma to recover from her faint and struggled to get her limp form into bed where we could better help her. I was so very glad to have two nurses there to witness the episode, help me care for her during the episode, and help get her cleaned up and ready for bed afterward.
Momma was now resting comfortably in her bed and the nurses were preparing to leave. I heard my phone ring. Rita called to see if I needed any help; specifically offering to come spend the night so I could get some much needed sleep. I smiled as I listened to her kind offer and quickly responded with my “Yes, please!”
As I said my goodbyes to the nurses and awaited Rita’s arrival, I offered up a prayer of thanksgiving to God for sending TWO hospice nurses tonight and for giving me a friend like Rita – a friend who is truly the hands and feet of Jesus in my life right now.
Barefoot Lily Lady 