Alzheimer’s – Page 10 – Barefoot Lily Lady

Intruders in the Night

“This is Charlotte Boyles! I need help!”

That was the 4-something a.m. frantic call of Momma, who had spent all night keeping an eye on the intruders in our kitchen. My sister Vivian, on overnight “mom duty” at the time, answered from her upstairs bedroom, “I’m coming Mom!” Vivian listened to Mom’s report of suspicious activity coming from the kitchen, attempting to assure her that all was well and our home was secure. Mom was convinced beyond any shadow of doubt that there were thieves hiding in the kitchen’s pantry; she had seen them with her own eyes and had heard what they were saying. Vivian did a walk-through of the kitchen, opening and closing the pantry cabinetry and its swing-out interior doors to check inside. Nothing unusual there, but Momma still believed ‘they’ were here hiding in there somewhere.

Momma said she had a phone in her purse, and she wanted Vivian to call the police. The phone was actually the remote control for the TV. She had other emergency items packed in her purse…just in case, including a pair of scissors she would use if she had to jab her way to safety. Vivian escorted our frightened Momma back to her room, closing the draperies on the windows and doors. She stayed in the chair beside her, bringing an extra measure of security.

During all of this excitement, I slept peacefully in my bed upstairs. It was nice to have my sister on duty for this one. Both my husband and my bleary-eyed, sleep-deprived sister told me all about the adventure when I woke up.

My brother had a dental surgery appointment that morning, so I would be busy taking him to and from that appointment. While I waited for him in the surgeon’s waiting room, I made arrangements over the phone with mom’s doctor to have her urine tested to check for urinary tract infection, the usual cause for hallucinations of this magnitude. Sure enough, a few hours later, the doctor’s nurse called with the results and to let me know they had called in a prescription for me to pick up at my pharmacy.

Sleep should be less eventful for Momma in a day or two. I hope.

This pretty mug usually contains coffee…but always holds a memory of my dear friend Melinda.

I try to look for “joy” in the midst of these sometimes challenging caregiving days. Admittedly, it’s sometimes hard to find the joy on days like this. But it was there nestled in something my sister showed me later in the day. She said, “Oh, Mom had this in her purse too. She wanted to save it from the robbers for you.” Viv held out a coffee mug. Not just any coffee mug. Momma had commented on the beauty of this particular mug a few days prior. I had told her it was a gift from a very special friend. As I took the Polish pottery mug from my sister’s hand, I was astounded that my mother would remember that this mug was so special to me. And even more flabbergasted that she would seek to save it from the very real (to her) robbers in our home.

My sweet Momma.

Honoring Your Parents: Nursing Home or Your Home?

Caring for my Momma in our home was a relatively easy decision, although the path toward making that decision was anything but as it took many twists and turns along the way. From the earliest days of traveling back and forth between Fitchburg and Milwaukee, to moving her closer to us, God has always been faithful in shedding light on the next step we need to take in our caregiving journey.

At first, we wanted to make an addition on our home for her – a first floor granny suite. Our local senior center’s social worker, along with our elder care law attorney, both agreed that this sort of building project was an appropriate use of her financial resources. Should we ever have to “spend down” her resources in order to satisfy Medicaid guidelines, they assured us that the expense would be allowable and justifiable. So, we did a little homework by getting an estimate for making an accessible one-bedroom plus a bath addition. To say we experienced “sticker shock” would be an understatement.

I was disappointed. Very disappointed. I cried…a lot.

Having nixed the expensive addition idea, we decided that keeping Momma in her nearby senior apartment under our close supervision was still the best option. With the assistance of family, an occasional friend, 11 hours of professional caregiving a week, and well-placed wi-fi cameras, we made it work. Then, about five months into this arrangement, a recurrent battle with a urinary tract infection resulted in hallucinations, alarming behavior, and plenty of evidence that Momma needed more care.

It seemed impossible to keep her at our house. So many questions and not enough answers. Where would she sleep? Our bedrooms were on the second floor. What if she wanders in the middle of the night? A sunken-living room became a potential fall hazard. How would she bathe? We only had a small half-bath on the first floor; it would barely be walker-assisted navigable.

There were just too many obstacles, so I moved in with her to help with daily needs.

moms room — Our dining room turned bedroom

Well, after 8 months of that, Momma took an ambulance ride to a nearby hospital and life changed once again. As I stayed with her in her hospital room, painfully aware that she couldn’t go back to her apartment, I prayerfully turned the various options over in my heart and mind. My husband was doing the same thing. When we sat down to chat about it, we realized we were on the same page. We were going to make room for her in our home. We would make it work by turning our dining room into a bedroom for her. You can read more about that here.

As I continue to blog and share my journey in caring for my mother, I am learning that I am not alone in making difficult decisions related to caring for an aging parent. I have a number of friends who are caring for one or both parents. Some have decided that their loved one would receive better care in a retirement home, assisted living, or skilled nursing facility. I support them in that decision, knowing it was reached prayerfully and with great deliberation.

As a daughter seeking to provide compassionate and God-honoring care for my mother in my home, I found the biblical insight of a podcast I listened to today to be very helpful. The realization that I may need to make a decision in the future that would mean my mother would no longer be cared for in our home becomes more intense with each day that passes. I thought I’d share the link to Desiring God Ministry’s “Ask Pastor John” series on the subject of “Retirement Homes and Caring for Aging Parents.” The information he shared confirmed in my heart and mind that I am doing the right thing for the right purposes and, should her needs change, I will not be dishonoring my mom by placing her in a facility where she will receive appropriate care.

I encourage you to click on the link above to access the podcast, but let me leave you, dear reader, with a tiny bit that was especially encouraging to me.

Are we ready to make sacrifices for our parents? Or are we resentful that they are becoming a burden? That’s the real test. All of this may or may not mean that the parents come to live with us or near us. There are innumerable variables that make one situation right for one family and another situation right for another.

After Midnight Search

Sometimes life is just clearer in retrospect.

I know now that I should have responded to the video monitor’s prompting much sooner. Perhaps I would have been able to get more sleep if I had gone to Mom’s mental rescue sooner. It was after midnight, and Momma was having yet another bad night struggling with sundowning. I watched and listened in on the monitor as she yanked the chain on her bedside lamp and sat up in bed talking to herself. Nothing new; the same questions she always asks – those questions that never go away, even with an answer. I heard the familiar “zip” of her purse as she went through the contents of her purse over and over again. Between each examination of the contents, she would carefully hide the purse beneath her bed sheets. Then, in delighted surprise moments later, “find” the purse and go through the unzip and search motions again.

In the wee hours of the morning she decided to get out of bed. I pushed my head deeper into my pillow and watched from my own bed via the video monitor as she “furniture-walked” without her walker, opening and closing each drawer in her room, rifling through the contents and rearranging everything to her liking. She seemed to be looking for something. Momma was safe enough, just restless and confused. She left the room twice to use the bathroom, but always came back to her bed promptly.

I felt guilty just lying there watching, but I felt utterly exhausted and was in a bit of pain. You know that feeling you have in your leg after a middle of the night leg cramp? Well, I haven’t had a muscle spasm, but I’ve been having that type of “after pain” in my right leg all day. Add in a brewing migraine headache and a mom who just won’t go to sleep, and you have an equation that equals not enough sleep.

At two thirty, I got up to take some more ibuprofen, then drifted off into a state of semi-sleep, still listening, still peeking to see what Momma was up to. By four in the morning the tone in her voice changed to one of frantic agitation, so I made my way down to her bedroom to see if I could help, or at least redirect, so we could both get some rest.

Not wanting to startle her, I flipped on the hallway light so she would see me coming, rather than just have me appear out of nowhere in her room.

Bleary-eyed, I said in my loudest sleepy voice, “Momma, you really need to get some sleep.”

“Well, I’m not going to bed until I figure out who the guy in this picture is.” Momma held out a photo she normally carries in her purse. It was a picture of her with my Dad. I told her, “Well, that is you and Dad.” I could see her beginning to process that information and quickly realized that she was processing the word “dad” and couldn’t make the transition in her brain from my dad to her husband. I added, “Momma, that is your husband, Jerry.”

“Oh, Jerry Robert! Well, now that I know that, I can go to bed,” declared my sweet Momma as she crawled into her bed and nestled her weary from wondering head into the pillows I had fluffed for her.

It was a little disheartening to know that she was struggling to remember her husband’s name, and that I had let her struggle with that search for so many hours, rather than helping her fill in that piece of information so she could feel more settled. How scary that must have been for her.

I sleepily climbed the stairs and went back to my own bed with a prayer in my heart for Momma and me. This time, sleep came easily. Four and one-half hours of sweet sleep.

Trusting in God When Mountains Crumble

This morning Momma emerged from her room carrying a photograph and a ballpoint pen. She had an all too familiar look of confusion on her face as she shuffled walker-less to her place at the kitchen table. As she gingerly turned herself and plopped hard in her chair she lamented, “I just can’t remember anything today. What day it is, what time it is, who am I, why am I here? It’s all so confusing. And who is this in this picture?”

I took a peek at the picture to see if I could help. It was one of the pictures my sister had been wondering about. The photo, along with a handful of other pictures of Viv’s children in their growing up years, had mysteriously disappeared during her last visit with Momma. Knowing Mom’s propensity to hide things, Viv had texted asking me to keep an eye out for the photos. I had found the others, but had missed this one.

“That’s your grandson Scotty when he was a boy. He’s a daddy himself now.” Momma sat silently studying the picture for a few moments, willing her mind to remember, but obviously drawing a blank. “Oh, no! I wrote on the back of it!”

Momma’s handwriting was definitely on the back of it, and the picture had been ruined by the tell-tale ballpoint markings. Momma had used the photo as if it were a piece of scrap paper, copying what she had read off of the face of the clock in her bedroom. Momma tried to reconcile what she had written on the photo with what she saw on the clock on the microwave. “No, it’s supposed to be 7:13, not 7:30!”

There was no point in trying to explain that time changes by the second. This was one of those moments in Momma’s changing world of Alzheimer’s where I could almost feel another piece of Momma’s mind slipping away.

I asked Momma if she remembered her name. She assured me she knew it, but wouldn’t say it. I prompted, “Of course, you know you’re Charlotte Peet Boyles.” She looked relieved at the reminder of what her name was as she nodded her head in agreement. I smiled at Momma in an effort to encourage and calm her, but on the inside, I cried knowing she was fearful of what was happening to her.

I find comfort in knowing I am not alone in this phase of life. I follow a blog called “God’s Grace and Mom’s Alzheimer’s.” The author’s own Mama had gone Home to be with Jesus in December of 2016, after a long battle with Alzheimer’s. Cheryl had been there with her through it all. Now, her mother-in-law lives with her, traveling a similar path in life. Today’s post met me where I am. I share it (click on the link below) for those of you who are in a similar place in life right now – in need of a reminder of God’s grace in the midst of a seemingly impossible trial.

Source: Trusting in God When Mountains Crumble

Junk Mail Queen

Wayne and I would encourage everyone with an elderly family member to keep a close watch on their loved one’s mailbox (and checkbook and credit card statements). This world is so full of organizations unscrupulously preying on the heartstrings of the elderly and frail, many of whom are feeble of mind and unable to understand the ramifications of the checks they write or the information they provide.

I’m taking a moment today to reshare this Facebook note I previously published on July 10, 2016. As you know, since publishing this a little over a year ago, we have moved my mother in with us and have a much better handle on what mail she sees, but my heart still goes out to all of those elderly victims of junk mail abuse. Please click on over to my blog to read (or re-read).

Continue reading “Junk Mail Queen”

Weeding the Heart

Anyone who knows me at all realizes that I love flowers. This time of year, my garden is brimming with them. But you only see what I post on Facebook…the loveliest of the lovely. But, there are things that are not so lovely.

Wayne and I appreciate my sister’s every-other-week caregiving visits and are learning to take advantage of time when mom is well cared for to spend time together. It was a blessing that a recent visit fell on our 41st wedding anniversary, allowing us to get away for a day at a nearby bed and breakfast.

Besides well-pampered time with my hubby, I appreciated the gardens at Walking Iron Bed & Breakfast. With one step out of our beautiful first floor room’s door, we could sit a spell in a comfy Adirondack gliding chair on the immense wrap-around porch and enjoy the cottage garden’s beauty. Of course, being a gardener myself, that wasn’t enough. I had to traipse around the whole garden touching, smelling, photographing and making mental notes. As I wandered, I sensed innkeeper Karissa’s gardening style was much like my own. Like my garden, Walking Iron’s gardens are not professionally planted or tended by a landscaping company. The owners of the B&B plant and care for the gardens themselves. In fact, when we arrived, our hostess was dressed in her grubbies and staining the garden arbor which graced the entrance to a very beautiful corner of the earth.

I loved Walking Iron B&B’s very beautiful sunny gardens brimming with beautiful daylilies, hardy hibiscus (some grown from seed), Asiatic lilies, coreopsis, zinnia and roses. The shady gardens included many gorgeous ferns, astillbe, a nice collection of hosta, and I loved the innkeeper’s use of a smattering of repetitive elements – a sort of eclectic order. But, you know what I loved most? On close inspection, Walking Iron’s garden had weeds. Lots of them. And many of the weeds were the very same type I had in my garden. In a twisted sort of way, I was encouraged and inspired by that.

Seeing the weeds in someone else’s otherwise gorgeous garden spoke volumes to a heart that struggles with frustration over the number of weeds in my own. You might not believe it if you have only my Facebook garden pictures to look at, but not all of my garden is composed of lovely, healthy plants and well-mulched, dead-headed and weed-free spaces. Much of my gardening time is devoted to digging and pulling weeds, including attempting to get rid of plants with “weedy habits” which threaten to push other more favorable garden lovelies out of their respective beds. Wayne hauls a trailer filled with garden debris over to our city’s composting site nearly every other week during most of the summer. My friends rarely see me post photos of my weeds. Or my Japanese beetle infested roses. Or my phlox and honeysuckle plants ridden with powdery mildew. Or the nasty “stretchy weed” that is a menace in my flowerbeds. But weeds, disease, barren spots, insects, burrowing critters and other pests are all part of of the world of gardening. Gardens aren’t perfect. And people aren’t either. My pastor, Jeremy Scott put it well when he reminded me that, “Beauty is always marred by sin’s curse.”

Just as closer examination will reveal weeds in the most manicured of gardens, close examination of our lives reveals weeds – things in our lives we choose not to reveal. Sin, actually. We may try to hide it from others, and might even do a pretty good job of that. However, Scripture reminds me that I sometimes can’t see the weeds in my own life.

“Who can discern his errors? Forgive my hidden faults. Keep your servant also from willful sins; let them not rule over me. Then will I be blameless, innocent of great transgression.” Psalm 19:12,13 (NIV)

Some of my sins are much more obvious than others. I can’t deny I have a problem with overeating. That particular problem is easy for the whole world to see. But there’s also that stinky attitude that crops up whenever I don’t get my way. And my more often than I care to admit struggle with redeeming time wisely; my Bible may sit in the same spot gathering dust for way too many days while Facebook gets checked religiously.

But, there are many more hidden things in the garden of my life, known only to my Master Gardener. God sees my weeds. He knows the condition of my heart. The mean words that slink their way into my thoughts – not spoken aloud, but spoken in the heart. The ungrateful spirit. The judgmental attitude. The worry. The irritation I feel when my Alzheimer’s plagued mother disrupts my sleep. The wicked thoughts and imaginations of my heart.

The Psalmist teaches me that, no matter how beautiful our lives may seem, we all have those hidden weeds. Those things known only to God. How thankful I am that verses 12 and 13 of Psalm 19 are followed by the more well known verse 14; the prayer of David’s heart – and mine.

“May the words of my mouth and the meditation of my heart be pleasing in your sight, O Lord, my Rock and my Redeemer.” Psalm 19:14 (NIV)

Wisdom from the Lips of a Child

The grandkids had all gone home and I had completed my post-grandkid visit tidying up routine: making beds, putting art supplies away, cleaning fingerprints off the glass-top coffee table, sweeping up crumbs from under the table, and the like. Even though it is a lot of work, it was good to have four of my grandchildren keeping me company while my husband was away on a little trip helping our son get his new home’s interior repainted.

Sandwiched in between taking care of my sweet Momma, our day together was filled with coloring to our hearts’ content, painting with my oldest granddaughter, baking, building roads and castles with good old-fashioned blocks, vintage Lite Brite artistry, feeding marbles to toy dinosaurs, sorting through a jar of old buttons and playing “favorites,” and creating fun designs with Perler beads. And for the three grandsons…taking a bath in Grandma’s HUGE bathtub…with bubbles and dinosaurs, of course!

Even cleaning was fun when my granddaughter Violet pitched in to help me clean her Papa’s office. Grandson Charlie even earned a little pocket change by dodging mosquitoes to help me pick raspberries and blueberries.

Though my Momma looks forward to the visits of her great-grandkids, the change in the level of activity always brings a certain level of stress to her Alzheimer’s plagued mind. She worried about a lot of things while they were here. Everything from whether or not they should be outside playing, to wondering what dangers lurk behind the basement door (it’s a playroom for the children). When I had put the boys to bed, she wandered around the house looking out of the windows counting and wondering if everyone was inside yet. But, even with all the stress (exacerbated by her usual sundowning), it was good for her too with coloring projects, crafts, meal-time chatter, and conversations with her great-grands providing a temporary distraction from her own problems.

It was also good for the great-grandchildren. In ways big and small, they contributed to caring for their great-grandmother; from speaking up so that GGma could hear them, to answering the same question five or more times (and not looking annoyed). Great-granddaughter Violet has developed a very keen ability to discern what her GGma needs or wants. On this visit, her great-grandma was in a circular worrisome thought pattern, fretting about what still might need to be accomplished on a to-do list she found on the kitchen table (it was actually MY to-do list). Violet brought out a photo album and placed it in front of her great-grandma, then sat next to her and began to help her page through the book. As GGma talked about the pages, Violet discreetly slipped the to-do list away. A more graceful (and thoughtful) act of redirection could not have been accomplished by someone two or three times Violet’s age.

Unfortunately, Momma’s battle with Alzheimer’s has progressed to the point we can no longer leave her alone (and I don’t have room for all 6 of us in our car – and, even if I did have room, Momma resists leaving the house). For some reason, even though we have fun together, I feel really bad when the grandkids come and we can’t “go” anywhere. But our oldest grandson set me straight when he candidly told me,

“Grandma, I love coming to your house so much. I love it more than all my toys and video games stacked on top of each other!”

My daughter assures me that stacked up against video games, this is a VERY high compliment.

Well, that heart-melting comment from my 8-year-old little love reminded me that, with a little bit of effort, I can still create some memory-making moments with my grandchildren while caring for my sweet mother. Of course root-beer floats for an after-supper treat and pancakes for breakfast didn’t hurt a bit in the ratings department.

Church at the Kitchen Table

Sometimes “church” doesn’t just take place on Sunday morning seated in a pew in a sanctuary.

Last night Momma sat at her end of our kitchen table smiling. Seated around our table were some pretty special dinner guests: my girlhood pastor and his wife, Ed and Diane Fuller, and their son and daughter-in-law, Scott and Dianne Fuller.

I told Momma about the visit shortly after she awoke in the morning. It’s funny how certain future events linger in the mind of a person experiencing significant short-term memory loss, yet other things slip right through like sand through a chicken wire sieve. Continue reading “Church at the Kitchen Table”

Beautiful Forgetfulness

It’s amazing how living with a loved one with Alzheimer’s changes the way I view the world around me.

There is a lovely park within walking distance of our home. In the eighteen years we’ve lived in this neighborhood, I’ve spent many hours at this park walking its paths, playing with my grandchildren, thrilling at the occasional firework display, and enjoying the park’s quietude and simple beauty. Today, I stumbled upon something beautiful along one of its meandering pathways. It’s a wild rose, a beauty hidden from the view of the casual observer as it scrambles up the trunk of a somewhat scraggly pine tree. I “discover” it there every year without fail, yet it always seems to momentarily surprise me when I spy it for the first time each summer. Continue reading “Beautiful Forgetfulness”

We all need an Advocate

An advocate is someone who can help you speak up so that your needs are heard, your rights are understood and your problems are resolved.

Momma and I took an ambulance ride to the hospital on April 30. Momma was in a lot of pain. A LOT of pain. She had a fever and she could not support her weight on her legs. In retrospect, there were a few signs I should have paid closer attention to, but the acute pain came on suddenly. She went from being able to use her walker, to needing assistance to get out of bed, to not being able to get out of her chair (or “off the throne”) in the course of just a few hours.

I must confess that there was a twinge of relief when I was told she was going to be admitted. It meant that someone else was going to help me care for her during this medical crisis. It meant that someone was going to help me make decisions. Continue reading “We all need an Advocate”