Alzheimer’s – A Broken Filing System

What happens when you want to remember something, but absolutely know you won’t? You write it down. For the individual experiencing short term memory loss, lists sometimes become a source of frustration. A caregiving daughter shares her view on helping her momma remember, while guarding her fragile dignity.

One of mom’s little notes…I was considered one of the “workers.”

Journal entry from June 7, 2016

Quite often these days, Momma will ask me to buy her a notebook the next time I go to the store, declaring that she can never find any paper on which to write her lists. I know for a fact that she has umpteen notebooks and pads of paper squirreled away all over her apartment home.

Mom is at what her doctor calls the “moderate stage” of dementia where she is keenly aware that she is losing her ability to recall information and is trying her hardest to keep random pieces of information that won’t stay filed away in her brain in a place where she can easily retrieve them. Her lists are her safety net helping her capture not only her to-do list, but the stray thoughts, ideas, and necessities of life.

She’s enjoying a photo album which has lots of captions written in the margins. Underneath, you can see her clipboard with a few of her important pages of notes.

Once in awhile, mom asks me to take her shopping. Shopping excursions to Walmart or Walgreens invariably result in Mom tossing a new package of legal pads or a brightly colored spiral bound notebook into her shopping cart. She insists she is all out of them and there is no convincing her otherwise. Rather than bringing a sense of order to her world, the multiplicity of lists bring chaos to her sense of order as she tries in vain to gather her thoughts into one place.

I have since gathered most of those notepads/books into one cabinet in her apartment. One thing is certain–she has no need for more notepads. Rather, under her watchful eye, I acquiesce to mom’s request and jot down a note for myself on a shopping list, assuring her I will purchase a notebook for her on my next trip to the store.

This whiteboard was one way we tried to help her gather her thoughts.

 You may be wondering, why not tell her the truth? Why the charade? Why not just tell her that she has plenty of notebooks? Right or wrong, I believe I am honoring my mom when I later “find” one of her notebooks and we can cross the “notebook for Mom” off my list. It gives mom the fleeting pleasure of having one of her requests granted, and I receive the gratification of pleasing my mother and guarding her fragile dignity.

A-Z Caregiving Tips (N & O)

Here’s the next in a series of Tuesday’s Caregiving Tips posts inspired by A-Z Caregiving Tips (an article in Alzheimer’s Today pictured below). A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. You can read my previous posts for my personal tips on A – M. Today I am sharing my thoughts about “N” and will add my own “O,” since the article did not address that particular letter. Thanks for stopping by to read my blog – the “likes” and “comments” of my readers feed my motivation to write.

N – Note that I take your words literally, so avoid teasing and sarcasm.

In the early stage of memory loss, mom would sometimes take “just kidding” comments quite literally. Likewise, when mom reached what was thought to be the stage of “moderately severe” memory loss, it seemed that her ability to understand and appreciate sarcastic humor and irony disappeared too. This was especially noticeable in social “table talk” situations.

Mom enjoying putting together puzzles (3 in one evening!) with the help of her grandson Matt and her great-granddaughters Mia and Noelle. Puzzles were helpful in guiding enjoyable conversations with mom.

Teasing and sarcasm are part and parcel of family gatherings such as Thanksgiving. We like to tell stories on one another and kid each other about silly things we’ve done lately. We sometimes use tongue in cheek jesting during our bantering around the table. Mom always had a quiet sense of humor–she would appreciate a good joke, but usually was not the one to tell it. She’d smile at the kids. But now, while she herself could often say something witty, there was no understanding of the “punch line” to someone else’s joke and a blank look at any attempt at humor.

Turning off the humor at the table isn’t the answer, but understanding how our loved one with dementia might be processing the conversation can be helpful in making the conversation inclusive for them too. Our bigger family dinners (e.g. Thanksgiving and birthdays) were the most confusing for my sweet mom. She would sometimes leave the table and go to the quietness of her room. When that would happen, family would go in an visit her one on one. She enjoyed that experience much more.

Another helpful tactic was to do something mom enjoyed at the table. Working on a puzzle or coloring became a unifying factor in conversation for her.

O – Own up to your mistakes in caregiving, but don’t beat yourself up about them. Mercy is new every morning.

I freely admit to making a lot of mistakes in caregiving. I recall days when my voice carried more than a little annoyance in it and harsh words would fly. Days when I was anxious and weary and my facial expressions did not communicate Christ-like love and compassion. There were times when I would confuse mom by asking if she remembered something when I knew full well that she couldn’t–or, similarly, when I would expect her to remember something we had already talked about. One of the hidden grace gifts of Alzheimer’s is that momma wouldn’t stay hurt and mad at me for long. She would soon forget my blunders and I would have another opportunity for a do-over in caregiving.

Likewise, in other relationships, there were times when I did not express my appreciation freely enough. I’m thinking of a time when I made my sister feel bad about how she handled a caregiving situation, rather than being gracious and knowing she did what she thought was best when she was taking a turn at caring for our mom. It’s sometimes easier to see the mistakes and failure of others than it is to see the same problem in our own lives.

It’s a wonderful thing for me as a believer in Christ to know that His steadfast love for me will never cease. Never. Ever. His mercy will never come to an end. Never. Ever. I praise God for His faithfulness in providing a daily (constant) supply of love and mercy. Knowing and believing the truth expressed in Lamentations 3:22-24 helped me through many times when I felt like a dismal failure as a caregiving daughter.

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” (Lamentations 3:22–24)

A-Z Caregiving Tips (M)

Written with love and great admiration for all those who are caring for a loved one who is facing Alzheimer’s or any other diagnosis that spells memory loss. I write from my experience of caring for my sweet mother in her later years with Alzheimer’s.

Here’s the next in a series of posts inspired by A-Z Caregiving Tips (pictured below). A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. You can read my previous posts for my tips on A – L. It seems I have a lot to say about “M,” so I will focus on that for this week.

Make new ways I can be of service to others

Mom was a nurse. A dedicated and amazing nurse. Even after she retired from her long career in nursing, she still practiced nursing in an unofficial way as she came alongside family and friends as they went through their physical trials in life. She was dad’s constant companion whenever he faced any of his cancers and surgeries. She served her friends as the requisite driver and responsible party when those friends faced day surgeries of various types. If someone was hospitalized, she was almost always one of the first visitors. Several of her friends had her come along to their surgeon’s or oncologist’s office when they were going to receive their scary diagnosis. Mom knew just the right questions to ask and how to help her friends through the difficult days ahead.

The time came when Mom was the patient with symptoms of short-term memory loss. I’m sure she knew something was amiss long before I started noticing memory blips. Who knows how many years she wrestled with that knowledge alone? Based upon dated notes and lists I found here and there, I would say for a few years.

Although Mom forgot many things, the experiences of her lifetime still served as a guide in her daily interactions. Even after mom moved in with me and then later into assisted living memory care, I routinely saw the nurse in mom present when she’d notice someone wasn’t feeling well and then do her best to make sure they were cared for appropriately.

Momma lovingly putting her “babies” to bed

She usually couldn’t remember she was my mom, but I saw the loving mother in her displayed in the way she cared for dolls. It was like a special window into her past which allowed me the privilege of seeing what she may have been like when she mothered me as a baby. (Mom and me in this photo.)

Let me share just a few photos of her doing things which made her feel useful during her years spent living with dementia.

I’m thinking now of a resident at the assisted living memory care home where my mom lived for her last 14 months of life. June was usually the first one up every morning. She took very seriously her job of raising the window shades at the start of the day. The staff would then present her with a large basket filled with freshly laundered clothing protectors (bibs) and towels. June took great pride in folding them.

My mom would do the same thing when she was living with us for a few years. She loved to fold laundry, especially when it was warm out of the dryer. The warmth felt good on her arthritic hands. She would also dry dishes for us. Her legs were unsteady, so I would set her up with everything she needed at her place at the kitchen table. Mom had also been into gardening, so I would occasionally try to get her outdoors to help me. She especially enjoyed deadheading and cutting back spent foliage. Her specialty, however, was sweeping. She couldn’t stand to see even one leaf on the deck or porch, so we’d arm her with a broom and she’d happily sweep for quite some time.

I can’t talk about this subject without thinking of Heather, an amazing blogger I follow who cared for her sweet mother too. Heather’s mum, Margaret, had been an artist, so Heather would play to her mum’s interests and strengths by creating art therapy projects for her to work on throughout the day. They even opened an Etsy shop in order to sell some of her ‘Made by Mum’ projects, donating a portion of their profit to the Alzheimer’s Society. Heather’s amazing website Creative Carer is filled with photos and tutorials, a link to her very helpful and inspiring blog, and oodles of practical ideas for caregivers who desire to keep their loved one meaningfully engaged.

A-Z Caregiving Tips (J, K & L)

I write from my experience of caring for my sweet mother in her later years with Alzheimer’s. I hope that what I write will be an encouragement to those who are caring for someone they love.

Before you read this post, you might want read the A-Z Caregiving Tips (pictured below) which inspired me to write about my own experience related to these tips.

A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. I have already presented my experience with tips A – I, so let’s move right on to my take on J, K & L.

J just redirect me pleasantly if I keep repeating myself.

When memory loss becomes apparent to family and friends, it’s the repetition of stories which oftentimes raises the warning flag that something is amiss. Mom had several stories that would frequently replay. There was one she would tell about why she loves ice cream. Other repetitious stories related to how she acquired some of the items she owned, including three blue flowerpots and a purple tablecloth. I loved each of the stories and, as I mentioned in my last post, now I wish I had recorded her telling them.

Now, there’s nothing wrong with telling family stories around the dinner table. We all do it. It’s one of the best parts of gathering around the table for a shared meal. But, when the same story keeps looping during the same meal, that’s when things get a little tricky. It’s easy to hurt our loved ones by saying, “You already told me that a hundred times, Mom!” We’re tempted to roll our eyes and inwardly groan, “Oh no! Here we go again.”

That is where the art of pleasant redirection comes into play. In the world of dementia caregiving, there are many opportunities to practice this act of gently helping a forgetful loved one refocus their attention on something else.

My granddaughter provided one of the best examples of gentle redirection that I have ever seen. My mom found my to-do list on the kitchen table. Thinking it was her own list, mom kept reading the list over and over again, worrying about getting it all done. Violet (who was probably 12 years old at the time) brought a photo album to the table and sat next to her great-grandmother. In one stealth move, Violet opened the photo album and placed it in front of her GGma as she simultaneously slid the list away from view. Then she started paging through the album and talking about the photos. My Mom’s worries melted away and she was immediately engaged in this new direction of thought.

In fact, photo albums and picture books are one of the greatest tools in the toolbox of dementia redirection.

Sometimes, mom would ask the same question repeatedly. One such question had to do with her finances–something she couldn’t handle on her own anymore, but continued to worry about. My husband handled her finances for her and greatly helped alleviate this worry by creating a single page monthly statement which listed all of her financial bottom-line numbers in one place. Mom could read this over and over to her heart’s content. [I explained more about this in Alzheimer’s and Money Worries, which may be of help to anyone going through this stage with a loved one.] If mom was having a fretful moment about money, we could hand her this statement, which we kept on a clipboard. She would sit and read (and re-read) it for a very long while and would often comment about how helpful it was to her.

K Know that closing my eyes may be me trying to find my words.

Word finding is one of the earlier struggles I noticed in my mom’s journey with Alzheimer’s. It’s a problem I am wrestling with these days too. I have noticed that when I am struggling to figure out which word I want to use during a conversation, my family and friends will often provide the word for me during my long pause. Most of the time I appreciate the help; other times it just deepens my awareness and the inkling I have that my later years of life are headed in the same direction of memory loss that my mom experienced.

In fact, photo albums and picture books are one of the greatest tools in the toolbox of dementia redirection.

I don’t remember mom closing her eyes when she was trying to think of what she was going to say–at least not in the earlier stages. I remember that she would avert her eyes upwards and away, as if she was searching the corners of her mind for what she wanted to say. I do this too. I have also noticed something in my own pause to search for the words. By the time I’m ready to add my words to table talk conversation, the direction of the conversation has moved on to something else. It’s frustrating, but it reminds me of something important when engaging in conversation with my memory-challenged friends at my workplace. Don’t be in such a rush–wait for them to answer.

L Listen with me to music and dance tunes.

Mom would rather sit quietly and read a book or magazine than dance or listen to music. It’s not that mom didn’t like music; rather, her hearing deficit made listening to music more than a little bit challenging. While this point doesn’t apply much to my mom, it does bring to mind my work place. I work as a baker in an assisted living memory care home and am sometimes surprised by the music being played in the background for our residents. Sometimes I think the music chosen reflects the preference of the caregiver on duty, rather than the tastes of the generation being served.

The other thing I’ve noticed is that the radio or television in our care home is oftentimes playing too softly. The younger folks who work as the caregivers don’t seem to take into account the need for extra volume in this older population. Nor do we pay enough attention to what is being broadcast on the television in our common spaces. It’s much better, for instance, to choose a classic movie from the era in which these folks lived, rather than a talk show featuring four women arguing their views. Better (in my opinion) to choose a nature show over a scary, blood and guts movie.

Don’t get me wrong–our care home is fantastic and is blessed with a number of great caregivers. But, there is one caregiver who I find to be absolutely delightful. She will put on music the residents love and engage in a little song and dance. She’ll even make up her own tune or sing a familiar jingle, even if she’s just passing through the room on her way to her next task. If they’re having an exercise class, she’ll join in and spread her own brand of love, laughter, song and encouragement. Marnie makes the residents smile (and me too).

The world of memory care caregivers needs more Marnies.

In Praise of Activity Directors

During the month of November, many people like to take a little bit more notice of the things for which they are thankful. The older I get, the “things” on the list grow fewer and the “people to be thankful for” on the list grows longer and longer. Today, I’m feeling a wave of praise and thanksgiving wash over me as I think about one special person.

Can you see the joy in mom’s face as she responds to the accordion music?

It was probably 2019, but it seems not so very long ago, when I arrived at BeeHive for a visit and lunch with my sweet momma. As I stepped into the door of the home, I spied my mom seated in a circle with her friends at BeeHive. Judging by all of the pool noodles and the balloon in the middle of the circle, BeeHive’s gregarious activity director had just finished leading a group chair exercise session. The residents, faces still flushed with joy, were listening as Kathleen continued on with an exercise of the mind, asking them to finish phrases like:

  • Practice what you ________.
  • Better late than ________.
  • Laughter is the best _________.
  • A woman’s work ___ _______ _____.
  • Birds of a feather _______ _______.

The residents seemed to enjoy this activity very much, but it was easy to see that mom’s participation level was very limited. Marked hearing loss and seriously impaired cognitive ability made it almost impossible for mom to participate in a meaningful way. But, I noticed one thing that was very special – it was the way mom was looking at Kathleen. There was love and admiration in momma’s eyes.

Very few activities captured mom’s attention for long, but Kathleen patiently encouraged her to try. If mom would wander away or was otherwise not engaged in the activity itself, Kathleen did her best to draw mom into the circle and strived to include her in the camaraderie of her fellow residents as an observer.

Kathleen leading a fun activity (mom is on her right)

Kathleen’s strong voice always carried an endearing lilt of cheerfulness to my mom’s hard of hearing ears. It’s difficult to say how much mom actually heard, or understood, but mom could read the joy and encouragement on Kathleen’s face.

Mom playing Bingo!

I will be forever grateful for Kathleen’s part in making my mom’s final leg of her journey toward her heavenly home a more pleasant one. Now that I’m baking a few days a week at BeeHive, it’s such an honor to be able to continue to witness Kathleen fill our assisted living memory care home with buzz and excitement. She now works alongside a sweet cohort in all things fun named Julia. Whether they are painting fingernails, calling out Bingo, playing cards, leading in chair exercises, making a beautiful art project, or decorating (and eating) delicious cupcakes, they make such a nice team in bringing a few moments of joy and a whole lot more buzz to the hive.

My Top 3 Reasons for Choosing Assisted Living Memory Care

Someone recently asked me how I decided when it was time for my mom to be cared for in a nursing home or assisted living memory care. I’ve written about that decision a time or two, but decided I should write about it again.

Before I share my personal “Top 3” list, I invite you to grab a cup of coffee (or your favorite beverage) and listen to this video by Dr. Natali Edmonds — someone who has been a virtual mentor for me as I’ve learned about being a caregiver.

Dr. Natali Edmonds

“People who place their loved ones in nursing homes are not horrible people. They don’t love their loved ones any less than people who care for their loved ones at home. In fact, sometimes placing a loved one in a nursing home is the best thing for your loved one.”

Dr. Natali Edmonds

Now, here are my Top 3 Reasons

Reason #1: Sleep

Not mom’s sleep. My sleep. I wasn’t getting enough of it and it was beginning to affect everything. Long-term sleep deprivation is brutal. Whether I wanted to admit it or not, it was creating “excessive caregiver stress” and it was showing up in all of the areas of my life that mattered the most to me. It was harming my closest relationships — my time in God’s Word, my marriage, my opportunities to spend quality time with my grandchildren, my friendships. I was a tired and distracted employee and my job performance suffered. I loved teaching Sunday School, but I knew in my heart I wasn’t able to focus on preparation for my ministry and wasn’t as creative in my teaching as I once was. Those in my circle of friends were beginning to comment about how tired I looked.

Reason #2: Personal hygiene needs

Mom’s resistance to help with personal hygiene, to put it politely; bowel incontinence, to be specific. When my mom’s brain could no longer register the “urge to go” with the need to do something about that, life got a lot messier. Literally. Between multiple clothing and bedding changes, multiple loads of laundry, and floor and bathroom cleanup, daily life was getting too hard for one or two people to handle. Mom needed more hands on care and a bathroom that was designed with disabilities in mind.

Reason #3: Safety & Mobility issues

In the later stages of dementia, mom was beginning to forget how to walk. There were days when she needed coaching to put one foot in front of the other. Her legs were growing weak, making her a greater risk for falls. Using a walker helped, but not always. Sometimes she’d forget the walker in another room. Other times, she’d drag it behind her. On a few occasions, she couldn’t figure out what it was, so stuck it outside of her room so it wouldn’t be in the way. My house wasn’t designed for using a walker or a wheelchair. All of the bedrooms and full bathrooms were inaccessible to mom since they were located on the second floor.

We made the best possible use of this half-bath space to accommodate mom’s growing needs, including taking the door off the hinges so we could have more room to maneuver and help her.

The more of a problem “Reason #2” became for us, the more I knew she needed a safer place to live.

I applaud and encourage the many who have made “at home until the end” work. You are amazing caregivers! Please understand, however, that you will still be an amazing caregiver if you make the hard choice to reach out for help in caring for your loved one. You do not cease to be a caregiver by changing the location of where that care is given or who helps you provide that care.

I’d like to leave you with a little slideshow with just a few photos depicting how happy and content my mom was in this abode where opportunities were many, friendships were sweet, and help was always on hand.

“The best place for your loved one with dementia to live and grow old depends upon several things, including: what help they receive, their willingness to receive help, their physical abilities, and the specific dementia symptoms they have. Not everybody with dementia requires the same level of care.”

Dr. Natali Edmonds

If I Get Alzheimer’s

Today I complete another trip around the sun. Most people get a little forgetful as they age – you know, the searching for the glasses perched on top of the head sort of thing. As I now approach the middle of my sixth decade of life, I am keenly aware that I am spending a tad bit more time looking for mislaid things, and much more time trying to figure out the names of people whose names I should remember. My sweet mom had Alzheimer’s in her later years of life, so I will confess that my own little forgetful moments cause me to think about what may be down the road for me. I suspect the day is coming when my memory will fade, and perhaps gradually vanish.

I write this post for any of my readers who are faced with loving and caring for someone they love who has heard their physician say “Alzheimer’s” when delivering a diagnosis. My dear family, I especially write these words to help you in the event that I someday hear my doctor say that dreaded word, or any other diagnosis which spells memory loss and dementia. You will likely need to make many hard decisions on my behalf – like taking away my car keys and deciding when it is time for me to live somewhere else. You were there when I made those difficult decisions on behalf of my mom and likely remember how hard that was for me. Take heart, God will give you wisdom for each decision and shed light on every step you need to take.

If I get Alzheimer’s, don’t ask me to remember; instead, reminisce and tell me stories from our past. What do you remember that we did together? Tell it again and again to me.

If I get Alzheimer’s, and I perchance do tell you a story from my past (or yours), you might want to write it down or record the story I’m telling you. I may tell you that story over and over and over again, just like your grandma did. Do you remember her talking about how she made her blue flower pots when she was in West Virginia, or how she dug the purple tablecloths out of the trash, or the stories about her wedding day? Just remember that the day will come when I will tell my story for the very last time and you will one day wish you could hear me tell it once again.

If I get Alzheimer’s, I might stubbornly refuse to bathe. The fear of bathing is the sad and stinky reality of this horrible disease. There might be a lot of fussing and crying, so let me tell you right now that when this time comes, you might find that hiring someone to help a for a few hours a day or two a week will be just the thing.

Tip: You might also find that dryer-warmed towels, blankets and clothes will calm my anxiousness. If all else fails, those disposable washcloths you can warm in the microwave are wonderful.

If I tell you I am cold, more than likely I truly am cold. In Alzheimer’s, the part of the brain which regulates body temperature and thyroid function goes kerflooey. Rather than subject yourself to turning up the furnace year-round, when you help me get dressed, start with a soft sweatshirt, then add lighter layers and keep soft blankets and throws handy.

If I get Alzheimer’s, I probably won’t remember to brush my hair. Will you please do it for me? Please use a detangling spray when you brush my mane of hair. I use a detangling brush, working from the ends and then all the way up to gently coax the tangles out. I like my hair long, but cut it short if you must. I might be mad at first, but will likely soon forget what once was.

By the way, if I tell you my hair hurts, I am not confabulating or telling a fib. When my hair gets dirty, my scalp truly hurts. It feels like bruises on my scalp, so please try to keep my hair clean. Perhaps a weekly trip to the hair salon for just a wash will be just the thing.

If I get Alzheimer’s, it might be challenging to keep me occupied, so here are some ideas for you to try. Gardening is my happy place, even if it’s just my own blue pot or three, encourage me to play in the dirt as much as I possibly can.

I also really love to work on puzzles, and might enjoy working on one with you.

Oh, and I like crafts. I once helped my grandkids create things with beads and paint; maybe, in time, it’ll be their turn to help me.

Baking was a joy to me when my mind was clear, so I might enjoy helping you in the kitchen. Even though I am old, remember that my mind is becoming child-like. What can a child do to help? Perhaps I can stir the batter, whisk the eggs, or pour in the bag of chocolate chips.

I could set the table, dry the dishes and wipe off the countertop. It won’t be perfect, but I will feel like I have made a contribution. It’s very important to feel useful.

If I get Alzheimer’s, remember that I’m a blue-jean wearing momma who likes pretty knit tops – ones with interesting details like ruffles on the sleeves and pretty buttons and lace. When you buy clothing for me, I suggest you buy two of each of my favorites. This will help you cope with me when I insist on wearing the same shirt over and over again. Unless you’re handy with a sewing machine, you might even want to buy two in the next size down, as those with Alzheimer’s lose interest in food as time goes on.

Perhaps you have noticed that I practically live in an apron. I wear one in the kitchen, while I’m cleaning, or when I’m gardening. If I get Alzheimer’s and the day comes when I become ‘messy momma’ at meals and perhaps need a bib, you might spare my dignity and try an apron instead. If I need to graduate to a bib, please make me some pretty ones…with lots of flowers.

If you can’t get me out of my pajamas in the morning and I stubbornly refuse to get dressed, just put on your pajamas and declare it “Pajama Day”! Conversely, if at day’s end I refuse to put on my pajamas, please remember that there’s no harm in wearing my clothes to bed. Unless the clothing is soiled, it truly isn’t worth the battle.

Dear family of mine, you know that I love the Lord with all of my heart and go to church every Sunday. If it is within God’s providential plan that I get Alzheimer’s, may I ask you to please take me with you to church for as long as I am able? It will do my heart good to gather and worship with my family and friends. One day you may find that I fidget too much or speak out of turn, then you will know it’s time for me to stay home with a caregiver while you go praise and worship our Lord, fellowship with your friends, and feed your soul. I’m God’s child and He will be near, whether I’m at church or at home, so don’t feel as though you are leaving me alone.

If I get Alzheimer’s, help me stay in touch with friends, be they old or new. I loved to have family and friends come for dinner. Much like your grandma did, I would probably enjoy company, but may get overwhelmed with crowds, so make it just a few. They may not understand what is happening to me, so gently explain before they come.

Remember how I used to take a photo of your grandma with her guests (or snag one off of Facebook), then give her the card to hang onto when her guests arrived. I would add their names and how she knew the people, then laminate the cards. It helped her remember their names. Maybe it would help me too.

If I get Alzheimer’s, please get me outside as often as you can. I always enjoyed walks in the park, so you might try that again. Push me in a wheelchair if you must, but let me enjoy nature and a bit of fresh air for as long as I’m able (and willing).

If I get Alzheimer’s, one day, you may find, I’m terribly unwilling to leave the house where I live. Going outside may become a terror, rather than a joy. If that day comes, try to create a comfy spot where I can sit near a window and enjoy the beauty of flowers and trees planted nearby, or a grandchild-painted birdhouse within view where a sparrow family might keep me occupied with their comings and goings.

If I get Alzheimer’s, you might like to know that I love to listen to music and would enjoy Christian radio. But if I’m anxious, you might find instrumental piano or guitar will help me to relax. I especially enjoy listening to great hymns of the faith. You’ll find what I enjoy on my Spotify and Amazon Prime music collection.

If I get Alzheimer’s, please remember my children and grandchildren are especially dear and I hope they will visit when they are near. If they can’t come to love on me, please tell them to send me cards and sometimes include a photo for me to treasure.

If I get Alzheimer’s, I might like to carry a purse even though I don’t carry one now. When memories no longer stay tucked away in my mind, a purse might give me a handy storage space where I can pull out special memories any time I like. You might want to tuck a few of my treasures inside: little photo books filled with family (be sure to label who is who), something to color and an array of colored pencils, little books of flowers and butterflies to help me enjoy the things God made. Oh, and finding milk chocolate or a cookie in my purse would be especially nice.

If I get Alzheimer’s, the day may come when watching television is my thing. I really enjoy mysteries, but nothing super scary. Put on a gardening show or gentle children’s programming and I think I’d be content. I don’t like to watch television alone, so would you occasionally sit with me?

One more very important reminder. If I get Alzheimer’s and ever forget your name, please know that my heart still loves you and someday (sooner than you realize), the day will come when God will take me Home and make all things new, including my memory of how special you are and how very much I love you.

Alzheimer’s: When Harsh Words Fly

I work a few days each week as a baker of all things sweet at a beautiful assisted living and memory care home – the very same place where my dear mom spent her last year on earth. The people who reside here are placed for various needs, most of them needing more help than family can provide with matters related to living life with short-term memory loss. In my short time there as an employee I am getting to know and love each resident, but I do have a few favorites. One of those favorites is as sweet as she is feisty. One minute she can be doling out compliments and kisses, the next she’s telling me to stick my mixer where the sun don’t shine.

But I love her to pieces.

I think she holds a special place in my heart because she reminds me in small ways of my mom (pictured here), who also had some bad days as she wrestled with Alzheimer’s in her later years of life.

In the years before Alzheimer’s, my mom was never one to use foul language; the worst I ever heard come from her mouth when I was a kid was an under her breath, “Shhh-ugar!” Yet, in the throes of the later stages of Alzheimer’s, my mom would occasionally make me blush with her language. If she were in her right mind, she’d be truly embarrassed.

Not long ago my new friend had a really bad day — I knew from the minute I walked in the door that morning that it was going to be a doozy when she began swearing at me for just saying, “Good morning.”

When any of our residents are having a bad day, I can’t really help much, as I’m “just the baker” and not directly involved in resident care. However, there is always one thing I can do. As my hands keep busy at the work of baking desserts, I can pray for those caring for the special needs of the residents. On that morning, I prayed for everyone involved in doing what was best for her, each one doing so with compassion and grace. All the while, I fought back tears for this dear woman who was living out one of my biggest fears for my future. You see, I struggle with the fear that Alzheimer’s may one day strip the filters from my tongue and that I might use uncharacteristically foul and abusive language.

So, how should caregivers deal with the foul language issue in their loved one with dementia? To answer that question, let me share a link to a super-helpful article from Very Well Health which discusses this problem and lists many suggestions. You’ll also find some internal links to explore on related issues: Relationship Between Foul Language and Dementia

My personal go-to tactic is the one in this article called “Redirect and Distract”. Where my mom was concerned, I would say something like, “Are you hungry? Would you like me to fix you a sandwich?” My mom loved sandwiches, so I kept a little stash of halved sandwiches in the fridge.

Other times I would distract her with an activity. I’d just walk away from her angry outburst and grab her coloring books and colored pencils and begin coloring. Nine times out of ten, she’d join me in a few minutes.

Coloring cards Momma received in the mail each week from her friend (and ours) Suzy.

Another thing I did on many occasions was to grab my collection of buttons and pour them out onto a towel on the kitchen table. I’d just quietly start sorting the buttons into color groupings, or line them up in rows. Mom could not resist this little sorting activity. Before long, she’d be calm and would join me.

Sorting buttons was a favorite calm-down activity for my mom

I wrote about these two and several other activities in my post Dementia Friendly Activities. The key thing was for me to be quiet and resist the urge to argue or add defensive words. Talking during one of her outbursts would only add fuel to the war of words raging uncontrollably in her head.

My friend at work has a similar calm-down button: her sweet tooth. I can sometimes redirect her downward spiral by offering her a cookie.

Since I’m the baker, I’ll sometimes say, “I need your help. Could you taste test this for me?” My friend also likes a slice of buttered bread with a cup of milk. Paying attention to what she enjoys and asks for in her calmer moments equips me with ideas for dealing with the tense moments.

Proverbs 31 Woman

While I dread the thought of ever having Alzheimer’s, I do trust the Lord with my future knowing that He will provide what I need should this be in His plan for me. It is my prayer that the Lord will keep my tongue sweet and gracious, and that the “law of kindness” will always be on my tongue. (Proverbs 31:26)

Alzheimer’s: Signs Along the Way

My dear readers, I think it’s about time to meet up for another cup of coffee and a chat. I thought we could talk about a question I am often asked.

What signs did you see that made you suspect that your mom was experiencing memory loss?

One place to start when gathering information about Alzheimer’s is the aptly named Alzheimer’s Association. You can click here for their Top 10 list of signs, but here’s my list of signs we noticed along the way:

  • Repeating stories multiple times at the dinner table.
  • Piles of stuff all over the house – very unusual since she was normally very tidy. The guest room bed was covered with several inches of mail and miscellaneous paperwork.
  • Finding everyday objects in odd places: her cane propped up against the fridge on her countertop; her purse in the fridge; keys under her pillow; toothpaste and toothbrush on top of her dresser; odd stuff in her purse…like banana peels wrapped like mummies.

Mummy-wrapped banana peel from Momma’s purse

  • Asking the same question over and over again.
  • A very messy calendar with lots of ‘White Out’ covering myriad mistakes (and her complaining that someone else was writing on her calendar).
  • Mom had always been a list-maker and would usually keep her lists in an organized notebook. Now, her lists were everywhere! You could find her notes to self on the backs of envelopes and snatches of paper; in multiple notesbooks or legal pads; in the margins of her calendar, etc.
  • Missed hair appointments. Her weekly hair appointment had been her habit for decades – it wasn’t like her to miss one.
  • Everyone loses their keys from time to time – believe me, I know! But the key hunt became a daily routine (sometimes several times a day) because she would hide them where they’d be safe.

Our solution to the hidden keys problem was to attach a “tile” which would allow us to use an app on our phones to find them. (Click here for info)

  • Ordering multiple sets of checkbooks; we counted five separate sets of checks for one account.
  • Hiding her checkbooks.
  • Unbalanced checkbooks and a dining room table littered with bank statements with notes of confusion written on each one.
  • Over-purchasing other items too: toilet paper, ballpoint pens, Kleenex boxes, dishwasher soap, spiral bound notebooks, and legal pads.
  • Repeating stories. Oh, I think I already said that.
  • Phone calls from neighbors reporting unusual behavior, including a concern over momma being outside ALL day in pretty much the same spot. And another with concerns about her driving.
  • A diminished desire to attend church or get together with her friends.
  • Hidden stashes of food – especially cookies and chips. We would also find partially eaten food here and there around the house. It made me nervous to think she might pick up spoiled food and begin eating it again.
  • Multiple cans of Coke begun, but not finished.
Momma can’t remember she already has a can of soda open.
  • Unflushed toilets. Mom had always been VERY particular about remembering to flush toilets.
  • Inordinate amounts of junk mail.
  • She somehow got suckered into two vehicle protection plans and two sewer and waterline protection plans. Unfortunately, she never used them because she didn’t realize she had them.
  • She kept renewing her magazines, even if she had YEARS left on the subscriptions.  
  • Losing large sums of cash. She once took $1,500 out of the bank for a vacation I was taking her on, but lost the money somewhere between the bank and home. We never did find that money, and her credit cards were in the same wallet.
  • Hiding valuables and claiming they were stolen.
  • Growing frustration with using a telephone or a once-familiar remote control.
  • When dining in a restaurant, she was no longer able to calculate a tip. Mom had always been an adventurous eater who was always game for trying a new restaurant. Whenever I would visit, she began going to the same restaurant and ordering the same thing each time. Or, without opening the menu, she would say, “I’ll have what she is having.”
  • Eating an entire carton of ice-cream in one sitting (we started buying it in pints and half-pints).

Most of these changes were subtle, but they began to add up. Somewhere in the middle of all of these changes, I knew in my heart it was time for me to make sure I invited myself to my mother’s next doctor’s appointment. I knew that he and I were going to have to become allies in my mom’s future care, so I stopped by her physician’s office and dropped off a copy of my power of attorney for healthcare paperwork so that they could be scanned into her record. I also wrote a letter to her primary care physician outlining my concerns. Now we could begin the process of me being in the loop related to care discussions and decisions. It was a hard step, but a necessary one.

Well, it looks like my cup of coffee is on empty and I did all the talking. Sorry about that. If I may ask, if someone you love has Alzheimer’s, what were some of the signs YOU noticed in your loved one?

Alzheimer’s – Sensitive Topics

With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken.

Sometimes I wrestle with whether or not I should write about something related to caring for a loved one with dementia. Some things just feel too private, too personal. In writing about an especially sensitive topic, I wonder if I will dishonor my mother in some way. I’ve wrestled earnestly with today’s topic for these reasons and more. However, as I speak with others who are caring for a loved one suffering from memory loss, many of them are dealing with the same thing. So, for the sake of those who need to know they’re not alone, here’s the topic:

Swearing.

As Mom’s battle with Alzheimer’s dementia intensifies, so does the bad language and harshness of the tongue. Those who help provide her care each day assure me she is still incredibly sweet – they love, love, LOVE her to pieces. They tell me that when her tongue gets sharp, she almost immediately apologizes and layers on the salve of kindness.

Before Alzheimer’s, Momma would never swear at someone. In a moment of frustration, she may think a curse word in response to a frustrating situation, but she would never say it out loud. She would quickly reign in her frustration and replace it with graciousness.

With Alzheimer’s, the filter on the tongue is missing. My sweet mother’s ability to reign in her emotions and frustrations is broken. With arms flailing, out come the curse words when her caregiver tries (sometimes in vain) to help her shower or get dressed. She’ll even blurt out curse words at me, the one who provides daily love and care for her.

It hurts my heart to hear her swear and say ugly, mean-spirited things.

Before Alzheimer’s Momma’s tongue held kind words, not critical and harsh ones. Her tongue reflected her actions and her love for her Savior; she was gracious and benevolent with both. She’d never blurt out what she thinks. She’d just smile and keep her thoughts to herself.

I know it’s the result of this disease. But, I also see very clearly that the curse of the sinful nature we are all born with is uncovered and revealed by this relentless and wicked disease. I know in my heart how much my mother loves Jesus. And I know how immersed she was in the Scriptures and what a prayer warrior she was before this disease stripped her mind of the ability to recall the things she has learned.

I always hoped that she would defy the odds of this disease and never forget the Scriptures she has learned. But now, it seems, she cannot understand what she is reading and tells me that the Bible I keep on her nightstand isn’t hers, even though it is filled with her own handwritten notes, prayers and thoughts.

I always hoped that music and the great hymns of the faith would be a help and stronghold for her in her later years. But she is usually quite ambivalent to it – although her poor hearing might play a role in that.

I always hoped she wouldn’t forget that she is a child of the King. On this last unfulfilled hope – she has forgotten, but God has not. She is His child and He knows it. He remembers her and will never forget – never forsake.

Someday, when all is made new, music will be restored and she will sing a new song in heaven. Best of all, she will meet the One she read about in Scriptures and has trusted by faith – Jesus – the living Word.

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