Missing the ‘Old Life’

“What do you miss most about your “old life”? 

Michelle Daly posed this question for caregivers on a recent blog post. It’s hard for me to choose just one thing, so I’ll mention the ones that come to mind first.

I miss sleep. Uninterrupted sleep. I’ve been sleeping with a video baby monitor on my nightstand long enough now that I’m learning to tune out Momma’s “normal” noises and harmless sundowning activities, such as rearranging her drawers and taking inventory of the contents of her purse. I have learned to tune into her needs, such as times when she needs extra help in the bathroom, or when she’s afraid and confused. So, I am getting more sleep, but uninterrupted, monitor-less sleep would be nice.

Me and my guy

I miss impromptu ANYthing, but especially the little spur of the moment daytrips with my hubby. Those days when we would just hop in the car and end up at Devil’s Lake for a hike, or down on the UW Campus on one of the walking paths, or just meandering through an out of the way garden center. Fun times.

Momma loves Pastor Jeremy and his family!

I miss having people over for dinner. But I’m working on that one. Momma’s usually social self is impaired by her Alzheimer’s frets and fears, making taking her anywhere a chore and very stressful for her. But, the hostess in her loves to have people come and visit with us over lunch or supper, so I’m trying to incorporate more social time with others into our week. Last night our friends Jeremy and Anouk came over for a pizza night with their two children, Mia and Isaiah. Such fun!

A blast from our past – my twisty grandgirls

But what do I miss most? If pressed, I’d have to say “time with my grandkids” is the thing I miss the most. No more impromptu slumber parties, ‘Fun Fridays’, trips to the library, or excursions to the zoo or a nearby park that usually end with a trip to Culver’s for frozen custard.

Violet & Charlie in a friendly game of Othello

Tonight four of my grandkids came over for pie and ice-cream and a little visit. From the moment they walked in the door with their mom and dad, they were clamoring over what we would DO together.  The grandsons wasted no time in pulling out some classic board games. The boys took turns playing “Battleship!” with me, with George getting a little help from big sister Violet. Later, our five-year-old George brought out a chess set and asked for help in playing it. Even though this particular chess set has a few pieces missing, his Papa and Daddy helped him learn to make moves and we delighted in his gloating over captured pieces. Granddaughter Violet and her brother Charlie played ‘Othello,’ another favorite game of strategy. I even got in a few hands of ‘War’ with Henry. When I wasn’t playing one of the games, I was just watching and smiling…beaming, actually.

Momma and her little friend Mia enjoy coloring together.

I love these times with family and friends, and wish there were more of them and that they could be longer. But tonight, I’m just grateful for our little get-togethers. Momma loves to color and will gladly share her coloring books and colored pencils with her great-grands and little friends. Seeing children laugh and try new things brings a quiet joy to her eyes. The memory of their visit will soon disappear, but the contentment and joy linger in her heart just a little longer.

The Day the Caregiver Cried

Momma had a good day on Saturday – well, as good as days get when you have Alzheimer’s. Wayne was out of town visiting a friend, so it was just the two of us most of the day. She had been alert, busy, and had a great attitude. I turned the clocks back one hour, looking forward to the possibility of an extra hour of sleep. But it was not meant to be – by the time my head hit my pillow she had her light on in her room and was rummaging through her drawers.

It was my turn to teach Sunday School the next morning, so I tried to sleep a little, staying on the edge of sleep, listening and keeping a sleepy eye on the monitor throughout the night, only intervening when I thought it was essential. Sadly, no amount of “redirection” on my part was going to get Momma to stay in bed. She was too busy scolding the intruders that were in the kitchen. Of course these intruders were invisible to me, but all too real in her eyes. She would cry out up the staircase in the direction of our second floor bedrooms, “Hello…whoever is working here tonight! There are people in the house who shouldn’t be in here.”

Morning arrived too soon and Kathi arrived promptly at 8 am. I am so thankful for Kathi, a spunky little lady who is my mom’s caregiving companion for 5 hours every Sunday. While she lovingly cares for my mom I get to teach my Sunday School class. Wayne and I can worship with our church family, have lunch together, and then visit my brother Brad in the nursing home. She’s such a blessing.With a warning that things might be a bit rough today, I set off for my time with my church family. What a privilege it is to be able to gather together with other Believers to worship God. Five hours later I returned home and found Kathi with tears of sadness and compassion welled up in her eyes as she mentioned the changes she had observed in Momma since last Sunday, saying Momma had been unusually “teary, anxious, and confused.”

the dancing paper doll

Momma’s marked delirium and anxiety continued throughout the rest of the day, with her “seeing kids playing in the trees” and “family members  hanging out in the yard.” A little decorative paper doll with a handkerchief dress was reportedly doing a little dance on her dresser. The fingers of the praying hands figurine that her mother made many years ago were eerily moving. As I accompanied my walker-schootching mother to her bedroom, she told me to get some shoes on because “there are bugs with stingers crawling all over the floor.” Those same bugs were also crawling on her bedroom wall, and birds were perched on her light fixture and flying around her room whenever they were startled.

Sunday evening my daughter Beth stopped by with three of her kids. Beth and Violet witnessed the nonsensical talking and delirium too.

Poor Momma. I’m guessing this is another urinary tract infection, even though test results came back negative for infection. I have a feeling this new testing of my faith may very well be my new “normal” in Momma’s journey with Alzheimer’s.

I’ve been studying and praying through the book of James lately. If y’all pray for me, please ask God to give me joy in the midst of this trial, and to use this season of life to mature my faith-life.

 

James 1:2-4

Faith Under Pressure

2-4 Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

The Message (MSG)Copyright © 1993, 1994, 1995, 1996, 2000, 2001, 2002 by Eugene H. Peterson

 

A New Box of Crayons

When I married my husband, my last name became Winquist. As I have melded into that name over the years, I have learned that there are certain things that go along with that name. New culinary tastes are part of the territory. I’ve learned, for instance, that homemade pies are very important. Especially rhubarb pie. Mashed potatoes are definitely made from scratch…and gravy too (still haven’t caught on to that part).

As a newbie Winquist, I learned frugality was a high priority. Empty jars and worn-out t-shirts get a second life, leftover ketchup packets are saved for future home use, and fruit and veggie scraps become wonderful compost for the gardens. My dear mother-in-law was the ‘Queen of Repurposing’ long before repurposing was even a thing. Bread bags and plastic butter tubs were rarely thrown away. Boxes took on a new life when they were covered with contact paper to make classier looking storage containers.  She even made her own rubber bands from her old support stockings (some of which are still in use in this house today).

Yes, frugality is a way of life for us.

When my daughter was in first grade, her teacher shared a concern with us at parent-teacher conference. Apparently, our family’s frugality was getting in the way of Beth enjoying first grade to its fullest. The Winquist-by-birth in our family had vetoed the Winquist-by-marriage during the requisite annual school supply shopping expedition by deciding that our daughter’s gently used crayons from kindergarten still had enough life in them for first grade. But, apparently, our Beth couldn’t help but notice that ALL of the other kids in the class had brand new crayons. It apparently sucked the joy right out of coloring for her.

At Mrs. Warner’s suggestion, Wayne lovingly laid aside his frugality and bought our Beth a new box of crayons. You would have thought he bought her the rarest treasure on earth. By laying aside the frugality and the putting on of generosity, the joy of coloring was back! In fact, since we had delayed our purchase, she now proudly owned the newest crayons in the class!

Momma happily engaged in coloring
This memory from our daughter’s childhood came to mind the other day when my still frugal husband exercised loving generosity by purchasing a fancy-schmancy set of Thornton’s colored pencils for my mother – complete with a carrying case. It was neat to witness the same joy in Mom’s eyes that I had seen in my daughter’s eyes years before. Momma’s world, lived in the throes of Alzheimer’s, was suddenly brighter and filled with more color and joy.

What Do I Know?

Things are changing once again in Momma’s world. In the past week or so, she has been having increasing difficulty using her legs, especially in the evenings. I can see her willing her right leg to move in front of the left, but her legs just won’t listen.  I have to come alongside her and coach her in how to walk, sometimes assisting her as one would assist a child. Other friends who are caring for loved ones with Alzheimer’s tell me that this comes along with the territory in this later stage of the disease’s progression.  We’re adapting to this change, making the best of it, but I can’t help but think about what lies ahead. The unknown can be scary.

I’ve been parked in the book of James lately, preparing to lead a Bible study for a few ladies from my church. In the first chapter, James addresses the reality of trials in life. They’re going to happen to all of us. No one is exempt. My life is getting a little uncertain right now and I am a bit perplexed as I consider what might be the next step I must take in caring for my mom. But right there in the third verse of that chapter are the three little words, “for you know.”

I ask myself, “What do I know?”  I can know that this trial has purpose. That this testing of my faith will produce steadfastness and that God is using it to perfect and complete me – to make me more like Him. And, crazy as it sounds, “count it all joy” that I have this opportunity to grow.

James 1

For this reason, I think it would be wise for me to shift my focus from what I don’t know to what I do know. 

I know my God is truly amazing! He has led me each and every step of the way so far, and He will continue to be faithful in leading me on the next step of the journey. He knows what I need in order to care for my Momma before I even have a chance to pray about it. Just like the chorus of one of my (many) favorite songs says:

You’re parting waters
Making a way for me
You’re moving mountains that I don’t even see
You’ve answered my prayer before I even speak
All You need for me to be is still

Still by Hillary Scott beautifully expresses the wonder of God’s everyday miracles. This song could very well be my daily anthem. Listen and be blessed.

I am not alone

The more I write about my journey as a daughter and Alzheimer’s caregiver, the more I realize I am not alone on this bumpy road. Since I began journaling on Facebook two years ago, and now on my blog, I have been amazed by the number of friends, family and readers who have shared that they have been or are on a similar journey in life.

James 1I shouldn’t be surprised. When I open the pages of my Bible to the book of James, I am reminded in the very first chapter that “trials of various kinds” are to be expected. They are, in fact, necessary in the growing process of producing a steadfast faith.

James even says that I am to “count it all joy” when these trials, testings and troubles in life come my way. Now, I don’t think James was necessarily talking the laugh until your sides split kind of joy, but the inner confidence that radiates from within knowing that, with God, I’m going to make it through this and be stronger in the end. It’s the complete trust that this trial or test will give me an opportunity to grow, to stretch my faith, to seek His wisdom, and to demonstrate to a watching world by my actions that my religion is not vain or worthless, and that my God is nothing short of awesome.

I am further reminded in 1 Corinthians 10:13 that “no temptation has seized me, except what is common to man.” My Bible study companion these days has been Dr. Joseph M. Stowell’s book, The Upside of Down, subtitled, “Finding Hope When it Hurts.” He tells me that the word “temptation” in this verse comes from the same group of words as the word “trials” in James 1:2, and that it could also be translated “troubles.”

My “trouble” or “trial” in life at the moment is being a caregiver to my mother who struggles with Alzheimer’s. It would be foolish for me to think that I am alone on this journey. In addition to having the Lord with me, there are countless others who have been here before me. I need only look in the “comments” section of my blog or on Facebook, or to the private messages I receive from those who do not want to comment in public, to know that there are many others who even now are on the road with me. A plenitude of websites and Facebook pages are devoted to those who are facing the trial of caring for someone with dementia. I currently am part of a support group at www.myALZteam.com, whose stated purpose is to provide a social network for family and friends caring for a loved one with Alzheimer’s. I write about my journey for them – and for those who are yet to sojourn here too.

If you are suffering through a trial, rest assured, what you’re going through is common to others. You can find someone else who has been there. My trial is the sometimes brutal and heart-rending task of taking care of Momma, a trial which pales in comparison to the trials of many others I know. Yours might be the devastating loss of a child, or estrangement from a spouse of many years. Perhaps it is the fear of the unknown due to a job loss, a scary medical diagnosis, or a financial upheaval. Or, just this week in the news, the many who suffered a sudden tragedy or loss at the hands of someone whose mindset was diabolically evil. No matter what your trial might be, look for someone who has been there before – someone who brought glory to God in the end.

Maybe you’re the one who is already on the other end of that trial – already experiencing the joy in seeing how God was at work in your life – securely resting in the knowledge that the trial was for your good and God’s glory. If that’s you, please reach out to someone who is still trudging forward in the muck and mire of their personal journey with pain. Put your hand on their shoulder and tell them that you understand. You’ve been there. For you, my friend, are the one who can honestly say from your heart, “Let’s talk. Let’s pray about this together. We’ll get through this together, by God’s grace and for His glory.”

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.

One of Momma’s blue pots

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.

“Mr. Winquist” and yours truly

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.

 

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”