A-to-Z Caregiving Tips (D-E)

We call them caregivers. Some caregivers are paid to do the job (and I’m SO thankful for them), but most are not financially compensated.

They just care. And give.


I hope my second article will be an encouragement to caregivers. My little series is based upon an article from Alzheimer’s TODAY called Tiny Gifts That Are TREMENDOUS, where Mary Kay Baum shared a helpful A-to-Z list of caregiving suggestions [Click here to read the original article]. My caregiver friends, come along with me as I share how these tips played out in my own caregiving journey. Last week I gave you my spin on A-B-C; this week, I’ll share my thoughts regarding D-E.

Do mention your name, looking at me.

One day I was helping my mom look for her checkbook (a frequent activity in the mid-stages of Alzheimer’s). As I sifted through the contents of her purse, I pulled out a list of names. Taking a closer look, I could see that the names were those of some of her closest friends at church. Each name was written out several times, as if she were practicing, trying to cement the names in her mind. I could imagine my mom sitting in her Bible study trying so hard to recall the names of people she had known for years.

It was during this period of time that I realized just how much mom was struggling with the names of the people she knew and loved. In retrospect, it was probably the reason she began declining invitations to social events and had not been regular in her church attendance.

One way we tried to help my mom was to create laminated photo cards which listed the names of the people in the photo and how they were connected with mom. I would get that photo out for her when that individual came for a visit. It helped mom save face by prompting her with the visual cue she needed to remember the names of her guests. As her dementia progressed, she just liked carrying all of her laminated cards around in her purse and seemed to enjoy sorting them and reading the captions.

ENJOY quiet times with me like reading to me.

Reading to my mom was a bit tricky. She was pretty hard of hearing, but I’m so proud of my grandkids (her greats) who did their best to include their great-grandma by reading with her. My youngest grandson George was amazingly good at this. He knew how to put on his loud voice and would snuggle up to her and look at books with her whenever he would visit.

Mom had a special spot at our kitchen table. Whenever the great-grands would come, they would try to do something at the table. Sometimes she’d join in the fun, other times she would just watch.

I’m not going to lie. Having a front-row seat to the heartbreak associated with mom’s onset and advancement of dementia was a hard place to be, but I’m glad I had the opportunity to be a blessing to her during that time. My bank of memories is full to the brim with more special moments than difficulties.

As dementia progresses, the ability to interpret the words written on the page becomes more difficult. Since mom enjoyed coloring, we purchased adult coloring books with simple devotional thoughts and Bible messages so that mom could continue to read. Members of the family also created photo albums with brief descriptive captions–she truly enjoyed looking through those too. Those same photo albums gave less familiar friends and paid caregivers something to do with her too–a connection and something to talk about and enjoy together.

It is my hope and dream that by sharing my own experiences – the good, the bad, the ugly, the beautiful – someone else will be encouraged in their life as a caregiver. Sometimes, sharing just one caregiving idea will give another caregiver the hope that they can DO this hard thing.

For more helpful information about Alzheimer’s please visit:

The Decline: Forgetting The Love of Your Life

My parents, Jerry and Charlotte Boyles, were married on a sultry hot day, the third of July in 1955. From time to time, mom told a few wedding day mishap stories about that memorable day, one of which was that her little sister (and flower girl) came home from summer camp that morning and had head lice. I can’t imagine what it was like taking care of that problem along with the usual hurry and scurry of a wedding day.

The other story that I rather like was best told by my granddad – the short of it was that he couldn’t find his brand new pair of dress socks, so subbed in a pair of his well-worn Sunday socks. He said that his feet hurt something fierce that day. As he told the story, it was because the “lost” socks were actually not lost. Rather, they were stuffed for safe-keeping in the toes of his dress shoes; a fact that was not to be discovered until after the wedding.

Except for candid photos and snapshots taken by family and friends, many of which are fuzzy, there weren’t many photos from their wedding day. My daughter took the photos we could find and created a beautiful memory book for their 50th anniversary – they loved to page through it. Though there were no professional photos taken on her wedding day, Momma had some beautiful formal portraits taken of her in her wedding dress prior to the wedding. She was a strikingly pretty bride in her waltz-length lace gown with a matching jacket. For her flowers, she carried a small white, lace-covered Bible with a sweet corsage on the cover and little ribbons tied with flowers streaming from it.

Twenty-one years later, I carried the same little Bible with my own choice of flowers on my wedding day.

Momma honored her wedding vows in every way as she loved, honored and cherished my dad. Her commitment to him shone most brightly in her keeping of the “in sickness and in health” part. She walked alongside dad through battles with five different types of cancer in his lifetime until the day God took him Home in 2008.

Forgetting is one of the harsh realities of Alzheimer’s.

It’s hard to pinpoint when mom forgot dad. There were signs along the way as her memory of dad dimmed. I grew a little suspicious when I’d find notebooks and scrap bits of paper where she had written his name over and over again; perhaps willing herself not to forget. Some days, the memories could be resurrected or refreshed as we would look through photos together. Other times, they were harder to conjure up.

One night when mom was still living with me, I thought I heard her crying so peeked in on her to make sure she was okay. I could see that she had a photo of herself and dad in her hands. Her back was to me, but I could also see that she was dabbing at her eyes with big wads of Kleenex. It broke my heart to see her look at that photo and say through her tears, “Oh, Jerry Robert. Where are you? I think you died, but I just can’t remember.”

The Lunch Bunch

Some of the signs of advancing memory loss can be seen most easily when viewed in retrospect.

Several years ago, when mom was still living in her own home in Milwaukee, I noticed that she wasn’t making it to her weekly “lunch bunch” restaurant gathering with a few friends. If I’d ask her about it, she would have a plausible reason. It wasn’t until I stumbled upon an envelope where she had written down the names of her friends in this group that I began to understand. Mom was in an earlier stage of memory loss – a very difficult stage where she knew her memory was failing. In this stage, mom had many strategies in place to help her remember things, including creating little “cheat sheets” for herself. One can only imagine her angst in forgetting the names of her good friends. As I looked at the envelope, I could see that, as the names came to mind, she would write them down – over and over again, as if willing herself not to forget.

Looking back now, I think it was just easier on her ego and heart to just stop going. My heart was sad when she stopped having lunch with her sweet friends…and even sadder when she stopped going to church altogether.

Looking back in the rear-view mirror of life, I can now clearly see that pulling away from the friends she loved was one of the huge signs of her advancing Alzheimer’s. As much as she loved these ladies, she can no longer remember their names – even with prompting. But I remember and am thanking God for these ladies. May I be the kind of friend to someone else that you were to my sweet mother.

Pumping Gas and other forgotten things

Journal entry dated May 30, 2019

My car ‘dings’ a gentle reminder when it needs refueled within the next 50 miles. My hubby usually does this for me, but today I’ll need to care for this task myself because I’ve ignored the dings a little too long.

My Dad had always filled Mom’s gas tank too. When Dad knew he was losing his battle with cancer, that’s one of many things he taught my mom how to do. She tried a few times after he left for heaven, but then found a gas station that would send an attendant out to pump the gas for her for just a few cents more per gallon. My brother Brad thought it was silly to pay extra, so he tried to show her how to pump gas too. Mom just couldn’t remember the steps. Brad didn’t have his own wheels anymore, so didn’t mind filling the tank for her so he could buy himself a cup of decent coffee, a donut and a pack of smokes.

Today I confidently pulled up to the gas pump to fill my own tank and was happy to remember this recently learned factoid: there’s a little left or right arrow next to the gas pump symbol on your dashboard’s fuel gauge – it tells you which side of the car your gas cap is on. I would never have to turn around and pull up on the other side of the pump again. Cool, huh?

Have you ever noticed the arrow next to the fuel pump symbol?

My glib confidence came to a screeching halt when I reached for my credit card. Now, I only carry two credit cards, yet I was stumped. “Hmmmm, I could text Wayne and ask him.” But that would be embarrassing. He has reminded me time and time again which one to use to purchase gasoline. How could I admit that I didn’t remember again?

I used to keep a reminder sticky note on the card, but that had fallen off somewhere along the way. After a few minutes of inner debate, I chose one of the cards and got out of the car. It had been so long since I pumped gas I had to read the instructions on the pump. Twice. I felt the eyes of the kid at pump #3 watching me, trying to figure out if he should assist the confused lady at pump #4. I felt embarrassed.

Was this how my mom felt when she knew she was forgetting things?

I pumped the gas and printed the receipt for my hubby’s use in updating our budget spreadsheet, then headed to visit my mom. Hot tears overwhelmed me as I drove those 9.9 miles. I cried because I was pretty sure I had guessed wrong on the credit card. I cried because I now understood how helpless Momma felt. Mostly though, I cried because forgetting things scares me. I’m walking this road of memory loss with my mom and I know it’s hard (and sometimes harder) on the one who is the caregiver. It truly grieves my heart to think that my husband, daughter or son, or a grandchild may walk this road with me some day.

I sat in the parking lot of mom’s assisted living facility and blotted my tears before heading in to see her. My heart smiled as Mom exclaimed a little yelp of joy when she saw me, and even told the friends seated at her lunch table, “See that lady there? She’s my best friend.”

After that heartwarming visit, I made a quick stop at a nearby gas station to buy a cup of coffee, then headed another block or so to the nursing home where my brother resides to visit a bit and bring him a cup of his favorite coffee. He was sleeping, so I left his coffee on his nightstand and headed home to get busy on my laundry. When I arrived home I gave Wayne the day’s receipts and was bummed to learn that, yes, I used the wrong credit card for the gas.

Alzheimer’s is a frighteningly hard path in life, but my walk alongside Momma has also given me firsthand experience seeing how God walks with us each and every step of this road paved with memory loss. While an underlying concern of personally having to experience this disease is always present, I have an even greater confidence God will give those I love much wisdom in walking alongside me if Alzheimer’s is ever my future.

In the meantime, I’m going to smile, grab my Sharpie marker, and write “GAS” in great big letters on my credit card as a visual reminder for the next fill-up.

Before I forget: Sharing Memories

One of the things that I am learning along this road I travel with my sweet mom is that the older memories are the last ones to leave; but, the ability to recount and express these stored up stories does slowly slip away. I find myself wishing I had written down more of the stories that my parents and grandparents told through the years. Continue reading “Before I forget: Sharing Memories”

I could never forget you

When you have Alzheimer’s you can’t remember that you don’t need to worry about something. So you do worry. A lot.

Mom worries about such things as whether there is food in the fridge and if she’ll be able to afford the things she needs to live. There is, and she will.

When we have guests, she worries about how they’ll get home in the dark, or where they’ll sleep for the night. She will oftentimes tell our guests that they can sleep in her bed if they need a place to sleep.  Sad, but sweet.

Her worries are usually small ones. She worries every night about whether or not she has a toothbrush. She frets about leaves and twigs out in the yard, or the water on the deck after a rain.

Other times, her worries are big. Her biggest worries are about the future. Just today, she came out of her bedroom with a worried expression on her face and said, “Oh, good! You’re here! Can I ask you a question?”

“Well, of course. What do you want to know?”

With tears playing in the corners of her eyes, Momma said, “So, do they have places for people to go when they’re not able to do anything anymore and are just waiting to die?” She paused for a few seconds, then added, “I mean, I don’t have any money. I can’t do anything to earn any money. Where will I go to die?”

As I have done countless times now, I assured, “Momma, you don’t need to worry about that. You have plenty of money.”

“I do? Well, where is it?”

I assured her that her money was safely in the bank and that her son-in-law was taking good care of it by investing it and helping it to grow. Then I added, “And you are staying here in my home. I will take care of you. You don’t need to worry about how much it will cost.”

“Oh, good! Thank you!” She struggled to point her walker in the opposite direction and said as she shuffled away, “Now, I’m going to go take a nap. I feel so much better.”

I smiled as I watched her slowly amble toward her bedroom down the hall. Then, as if she forgot something important, she turned once again and said, “Now, if you move or go any place, you remember you’re taking care of me. Don’t forget to take me with you!”

“I won’t, Mom. I could never forget you.”

The Day Dad Disappeared

Journal Entry – August 3, 2017

The past few days Momma has been paging through the little book of remembrance prepared for her by the funeral home that oversaw my Dad’s funeral arrangements in 2008. While I was preparing breakfast for her this morning, she looked up at me from her place at the kitchen table, tipped the book toward me as she pointed to a picture and said, “Is this how Jerry looked?”

I leaned over the kitchen counter a bit and looked at the page. “Yes, that’s Dad. He’s very handsome, isn’t he?”

“I don’t remember him looking like this.” It was a great picture of Dad, so I wasn’t sure what to say in response. I decided I should gently inquire, “How do you remember him looking?”

My heart should have been ready for her answer. But it wasn’t.

Tapping her temple as if trying to jog a stuck thought loose, with a heaving sigh and disheartened look she added, “I can’t remember him at all. I mean, I can’t bring him up in my mind anymore.”

I quickly swiped the tears stinging at the corners of my eyes, and then mom added, “Really, I can’t. And it’s really terrible when you can’t remember something you know you’re supposed to, and feels even worse when you can’t remember someone you loved.”

As a caregiver and a daughter, I would like to be able to help Momma create new memories to make the ones that are disappearing less painful. The sad truth is, this disease called Alzheimer’s makes it impossible for her to remember whatever fun thing we do, or pleasant conversation we have today. But, by God’s grace, I will continue to do my best to help Momma resurrect good memories and create new memories to enjoy, if even for a moment.

 

 

 

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.

 

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

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”