barefootlilylady

Are You the One in Charge Here?

Lately, my sweet mother has been more than a bit confused about her living accommodations, referring to our home as “this facility” and “this place.” Not long ago, she swept her hand out in gesture as if encompassing her living space and said, “Are you the one in charge of this place?” I told her yes it was our home and that Wayne and I both welcome her to live here. “Oh,” she replied, “are my meals and laundry included?” I assured her that they were. To which she replied, “Well, they haven’t fed me all day, and I think they’re stealing my laundry. I can’t find it anywhere.”

Not long ago, she was telling Wayne that “someone who works here” had given her some pills. She wasn’t sure who it was, but figured they knew what they were doing, so she took them. It was Tylenol, and it was me giving them to her just moments ago. Oh, and the “people who clean this place” and do the gardening around here just aren’t doing their job. The floors are always dusty. The gardens have so many weeds. “You should talk to them,” she insists.

I can watch Momma’s nighttime activity on a WiFi video monitor that sits on my nightstand. That’s a blessing because I know when she needs something…and a curse because sleep is interrupted quite often. On a few occasions, I’ve come down in the middle of the night to check on Momma because I could see on my monitor that she was crying. Sometimes it’s just confusion about where she is, but oftentimes it is her worrying about how she is going to pay for this place when she can no longer work and earn money. She’ll sometimes tell me that “they” are going to kick her out when her money runs out. On those occasions, I’ll sit with her for awhile and reassure her that she is loved, that she is retired and has plenty of funds, and that we will always take care of her no matter what.

Momma can make you smile with her wild tales about how she came to live here. On Saturday, a friend from church and her two young daughters spent the morning with Momma so that I could attend a Bible Conference with my husband. They had a delightful time, but, oh, the stories Momma told them while I was away. She enjoyed telling how this house was hers and that she shared it with us, describing how we had divided it up into her side and our side. And, of course, she had planted the gardens, adding to them over the years. (Mind you, she has only lived here since May!) She even shared with the girls that she had made her three blue flower pots when she was in kindergarten!

Of course, all of this is very real in Momma’s mind. That’s just a little taste of the confusion and disorientation that happens with the progression of Alzheimer’s. Not only is Mom confused about her accommodations, but also about the relationship of people to her.

Most days, she still knows us. Wayne is often referred to as “Mr. Winquist” – her term of endearment for him. Other days (mostly in the evenings), in her mind, I’m her sister Carolyn. As we look through picture albums or recall stories from her childhood, she tells tales of her youth as if I had been there too, sparing me the details with, “Well, you know. You were there too.”

My sister has been coming every other week or so to stay with Momma for a few days so I can get a little down-time. A few hours before each visit, I remind her that her daughter Vivian is coming. Sometimes she’ll give me a quizzical look and ask, “So, help me remember. Is Vivian my daughter? Or is she your daughter?”

On one of Viv’s recent visits, Momma came out of the bathroom and was looking for her Mom. Rather than remind her that her mother has been deceased for many years, Viv just went along with her and said, “Your Mom is not here right now. Can I help you with something?” Mom replied, “I just need to find my Mom.” I peeked my head out of the laundry room door and waved. Momma spied me and said, “There she is!”

So, in my mother’s mind right now, I’m her mother. That’s okay by me. She took good care of me for many years. Now, in this circle of life, it’s my turn to take good care of her.

Good & Bad Habits – Investing

Caregivers are often called upon to help with physical and financial matters. Another bit of wisdom from my hubby. I’m thankful to have someone watching over not only our investments, but also those of my mother and brother, who are unable to make those decisions.

Know Your Flocks & Herds

Proverbs 21:20 (ESV) – “Precious treasure and oil are in a wise man’s dwelling, but a foolish man devours it.” Do you live this and do your children and grandchildren see this in your life choices? Your habits often become the habits of your children. What do you think about that?

A successful investor has at least these six good habits and an unsuccessful investor does the opposite. The good habits are:

Have a plan and use it.
Don’t spend every penny you receive.
Ignore the crowd. Stick with your plan. The crowd doesn’t plan.
Don’t put all of your eggs in one basket.
Don’t spend more for an investment than it is worth. Keep maintenance costs low.
Think about others. This isn’t an exercise to build a bigger barn or take 365-day vacations. Put this in the plan.

Most people don’t even do the first habit. As a result…

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The Slow Backward Slide

It’s hard to say when I first noticed the decline in my mother’s ability to remember things. In retrospect, there were very subtle hints in 2008, the year that my Dad died. Forgotten appointments. Unopened bank statements on the dining room table. Multiple notebooks for list-keeping. Alzheimer’s has progressed fairly quickly in the past two years, but in the first years, it was a slow backward slide. Easy to dismiss and overlook. Easy to blame on something else.

I know a little bit about the slow backward slide myself.

It was just a few years ago when everyone was noticing my change in physique. Compliments abounded as my hard work with diet and exercise began showing up in the way I looked. My confidence grew with each pound lost. I began to run (well, that’s what I called it). My hard-fought progress was an inspiration to others, encouraging them to reach for goals of their own.

Continue reading “The Slow Backward Slide”

My Birthday Wish

In three days, I’ll be hitting one of those milestone birthdays that end in “0”. I usually don’t have much on my birthday wishlist because, truth is, Wayne buys me whatever I want or need all year long (well, MOST of what I want). That’s the kind of guy he is. The best. He had recently bought me some new clothes, so I couldn’t think of anything else I really wanted, although I joked (kinda) that I wanted that half a million dollar house on a lake I found while surfing around on a real estate site. I did tell him (in all seriousness) that I would like a carrot cake for my birthday…so, he bought the ingredients to bake one for me. And a little grandkid time, of course! He’ll arrange for that, I’m sure.

I didn’t think I really needed anything else – until I visited my doctor for my annual checkup on Monday and realized that the sedentary life of caregiving was definitely taking its toll on my physical health. Most of my day is all about helping Momma with whatever she needs. My doctor suggested figuring out a way to incorporate more exercise into my day. A little me time. So, I asked for a gym membership for my birthday. Wayne checked into it for me the very next morning and granted my birthday wish.

Today was my first day hitting the gym – well, the first day in a LONG time. If I felt a twinge of guilt leaving Momma in Wayne’s care for a couple of hours, it was only momentary. This “me time” was wonderful. Slightly indulgent. Sweaty good. Just right.

Thanks, hon! Happy birthday to me.

“So, how many names should I put in the pot?”

The phone rang on Saturday morning. I answered, already knowing it was my dear mother, and I could almost guess what she would ask. She had a hair appointment every Saturday morning and would go grocery shopping on her way home. “So, how many names should I put in the pot?” That was mom’s way of asking us to come over for dinner.

It was our family tradition most Saturday evenings when our children were tweens and teens. Sometimes we’d hop on our bikes and pedal the 3 miles over to my parents’ home. Other times we’d pile the kids and the dogs in our car or mini-van and make the short drive to Mom and Dad’s place. Our Cocker Spaniels would be hanging their heads out the window, long ears flapping in the wind, their little nugget tails a waggin’, sniffing the air, and dancing with excitement when they sensed we were to Grandma’s street. Sometimes we’d purposely drive by the 105th Street turn-off and the dogs (one dog in particular) would cry and whine until we made a U-turn and turned on the right street. Momma would always have a treat for those granddogs…and they knew it. Sometimes just a dog biscuit or two (my dad always lost count of how many dog biscuits he’d toss them), or a little rawhide chew, other times a pig’s ear for each of them (their favorite)!

And Momma always had something delicious for us. Her barbecue spare ribs were fall off the bone scrumptious, and she made a homemade potato salad that became one of her most-requested recipes. She sometimes made a casserole we all liked; usually something she called Yumasetta (said to be an Amish recipe), or a taco-ish dish covered in Frito’s corn chips, or “Hearty Beef N Potato Casserole,” a recipe that was served at a Christmas luncheon at her church in 1986. On a hot summer’s eve, she made this seafood pasta salad that was better than any I have ever had. Oh, and her potato soup. Oh, my! Her creamy potato soup was SO good that our daughter Beth wanted it on her 15th birthday menu – along with crescent rolls (from a can), deviled eggs, and cherry juice!

Sometimes I’d bring a side dish or a dessert, but Momma usually told me I didn’t need to bring a thing. “Just bring yourselves,” she’d say. I think the kids preferred when I didn’t bring dessert because they knew they could count on Grandma having a favorite treat in her freezer – a Klondike ice-cream bar, which can best be described as a huge chunk of ice cream covered in a thick shell of chocolate. And if Grandma was out of ice cream, Grandpa Boyles could be counted on for a cookie (he always kept a stash in a Tupperware by the back door to share with the kids in the neighborhood, who sometimes affectionately called my kind-hearted dad “Cookie Monster.”)

We’d usually just watch a favorite television show or two together. I can’t remember what all we watched, but recall “The Dukes of Hazard” and “Dr. Quinn, Medicine Woman” being part of the line-up at one time or another. I mostly remember the lovely feeling of coming home to the house I grew up in, and being thankful that our children had grandparents close by – something I didn’t have when I was growing up.

I have a few of Momma’s favorite recipes filed away in my recipe box. I can almost duplicate her creamy potato soup, but have never come close to duplicating her potato salad. Nowadays, Momma no longer cooks, as I wrote about in my story, “When the Good Cook Can’t” some time ago.

Yes, the table has definitely turned. Momma now lives with us and enjoys meals at our table. My children are all grown up and have homes and families of their own. Now they pile their own kids in their own mini-vans (no dogs, though) and come over and cook for her too, as they have opportunity. We are so thankful that we can do this for her as she wrestles with memory loss related to Alzheimer’s.

Momma, now it’s our honor and privilege to return the abundant blessings you lovingly showered upon us. May we be as gracious, open-hearted, and generous as you.

When the Good Cook Can’t

Oh, what a year this has been.

It’s hard for me to believe that a year ago, Momma was still living in her apartment on her own. Things changed rapidly after I wrote the post below. Momma lives with us now, but she still desires these “little sandwiches” over any other food I could possibly prepare for her.

Facebook Journal Entry – Thursday, September 1, 2016

If you have ever been to a Spring Creek Church potluck fellowship, you probably could recognize my Momma’s dish at the end of the potluck. It was always empty.

Continue reading “When the Good Cook Can’t”

The Night I Scolded Momma

I’m sick and tired.

I feel really bad. Not just because I’m truly sick (as in a horrible head cold with dizziness) and tired (as in haven’t had a great night’s sleep in what seems like forever). I feel really bad because last night I scolded Momma and sent her to bed. I actually scolded my Momma. I treated her a bit like she was a little child.

To be honest, she was acting like a little child. Coming up with every childlike excuse in the book as to why she was sitting in the kitchen at 1:00 a.m. She had pulled an all-nighter in the kitchen the night before, with me getting up four or five times to check on her. But tonight, I’d had enough. I needed some rest. I told her, perhaps a little too gruffly, that I was sick and I needed some sleep. I told her that she needed to go to bed so that I could go to bed.

“Well, you go on to bed,” Momma chirped, a little too brightly for 1:00 a.m. “I’m not a child. I’ll go to bed when I am ready.” With that, she picked up a book and feigned reading (she didn’t have her glasses on and there wasn’t enough light on to see what she was reading).

I planted my hands on my hips. “No, Momma. You need to go to bed NOW.”

“I need to go to the bathroom and brush my teeth.” Momma was stalling. She had already done both of those things.

“Okay, Momma. Go ahead. I’ll set your toothbrush up for you, but let’s do it right away so that I can go back to bed and know you’re safely in your own bed.”

Momma continued to stall for what, in my ill state, seemed like an hour. There is just no point in reasoning with someone who lives in an Alzheimer’s world. She doesn’t understand my concern for her safety. She doesn’t realize that I’m afraid she might fall or wander out the front door. She has no idea that she has Alzheimer’s and that she is now suffering from Sundowner’s, a symptom in Alzheimer’s best described as an upset in the internal body clock which makes her mix up her days and nights.

Somewhat exasperated, I scolded, “Momma. You need to go to bed NOW. If you have to pee and brush your teeth, that’s fine. I’ll wait for you in your room.”

A few minutes later, she scootched into her room with her walker. She didn’t stop in the bathroom, so I asked her (with as much gentleness in my voice as I could muster), “Do you need to use the bathroom and brush your teeth?”

“No, Cindie! I’m not a child.” Momma plopped on the bed, obviously mad at me, then slipped her shoes off and pulled her legs up into bed.

“Goodnight, Momma. I love you more than your realize right now. Thank you for going to bed so that I can get some sleep and get to feeling better.”

With that, I turned off her lamp and closed the drapery that serves as her bedroom door, and then took a different route back to the kitchen so I could turn off the light over the kitchen sink, hoping that the darkness would make it less likely for her to be lured back in there a few minutes from now.

Fighting another dizzy spell as I laid my head on my pillows, I pulled the blankets up over my tired body, then laid on my side and watched Momma on the wifi monitor I keep on the nightstand. She wasn’t sleeping. She tossed and turned and I could hear her grumbling. But she was in bed…at least she was in bed. I picked up my phone and clicked on my Bible app and listened to the narrator read from the Psalms until I drifted off to sleep again.

Why do I share this with you?

This is some of the tough stuff that happens when you choose to provide care for someone with Alzheimer’s in your own home. It’s the reason why caregivers need a break from the responsibility from time to time. I’m thankful for the support system I have in my husband, our daughter Beth and granddaughter Violet, our Friday night caregiver Kathryn, our Sunday morning caregiver Kathi, my sister Vivian, and a sprinkling of friends who help out from time to time. Without them, I couldn’t do this.

And I’m thankful this morning that, with Alzheimer’s, last night is forgotten. Momma still loves me.

Setting the Caregiving Stage

I love to get my hands and feet dirty. Try as I might, I can’t seem to keep my shoes or gloves on when I garden. I guess I’m a tactile sort of person who enjoys the feeling of the warm earth squishing between my toes or sifting through my fingers. I try my best to make things grow, but know in my heart that very little of it is up to me.

Landscape designer Tish Treherne wrote an article for Sunset magazine that I really enjoyed. Tish wrote about how she designed her personal garden space around their gorgeous waterfront home. She likes to keep things slightly wild looking by “loosely layering unfussy perennials.” I love her garden design philosophy and enjoyed reading her description of how the plants she chose nestle into one another like puzzle pieces to create a seemingly effortless whole.

I start planning my garden in the dead of Wisconsin’s winter when the first seed catalog comes in the mail. I get out my Sharpie marker and circle the flowers that capture my attention in the catalog pages and dream about where I’d put them in the garden. I get out my garden journal and jot down a few notes about what I’d like to plant, what I want to move, which plants I’d like to dig out, and what I’d like to purchase.

Whether shopping by catalog, or cruising the aisles of my favorite garden centers, I pay attention to the description of each plant, determining whether I have adequate space or light, or whether I’m in the right planting zone. My dear husband fully supports my need for dirt therapy, allowing me to add to my cart whatever little lovely attracts my eye.

Even with careful planning, planting and faithful watering, not all of my plantings survive. I have lost count of how many failed butterfly bush and clematis vines I have planted. Likewise, each tulip and daffodil bulb I plant in the fall holds the promise of a gorgeous bloom to follow in the spring, but not all of the bulbs I plant make it. Winters can be harsh, Springs too wet or too hot, cute little critters eat my plants and bulbs, disease strikes, insects munch away. Like Tish said in her wonderful article,

“You’re setting the stage as a designer, but you don’t have total control over what’s going to happen.” ~Tish Treherne

I often draw parallels for life from my garden, and Tish’s philosophy holds true on that front as well. As I seek to take care of my mother’s increasing needs for care, I am just setting the stage as a designer. With the help of our family, my husband and I turned our dining room into a lovely bedroom for her. She has a special spot at our kitchen table where she can watch the birds and view the gardens. We make sure she has meals that are reasonably healthy, treats that make her life enjoyable. I make sure she receives appropriate medical and dental care, and that she is adequately clothed and groomed. We try our best to ensure her safety by putting up baby gates, installing handrails, building half-steps, using video monitoring systems while she sleeps, and making sure someone is with her 24-hours a day.

I can design a stage for her care, but I do not have total control over what’s going to happen. She may take a fall. She will undoubtedly get a urinary tract infection and have hallucinations which will keep her (and us) awake. If this disease takes the usual sad course, she will lose the ability to walk, talk, swallow, toilet herself, or perform even the most basic of personal care. I have absolutely no control over her future. I have no idea what even this day will bring forth. But God does, and He will give me wisdom for the next step of Momma’s life journey…and mine.

In the meanwhile, we will enjoy the flowers that survived, each moment of restful sleep, the birds playing in the fountain, the September breezes, porch-sittin’ days, visits from family and friends, knees that are sorta working today, and all the other beautiful daily benefits that come from God’s storehouse of blessings.

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.