A-Z Caregiving Tips (P & Q)

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 – O. Today I am sharing my thoughts about “P” and “Q.” Thanks for stopping by to read my blog. Readers, you are most welcome (and encouraged) to share your own tips and observations about dementia caregiving in the comments below.

If the generation before me said, “Mind your p’s and q’s”, it was usually said in a firm tone of voice. It meant be polite and mind your manners–it might also mean to watch your language. Today we have come to the letters ‘P’ and ‘Q’ in our alphabet-inspired suggestions for dealing with loved ones with dementia. Both letters speak to watching what we say–‘P’ encourages us to fashion our conversations in an encouraging way, and ‘Q’ reminds us to omit certain words in order to help our loved one avoid the embarrassment of not being able to remember a person or specific event. Both are equally valuable tools in the toolbox for good caregiver communication.

Please affirm what I contributed and still do contribute.

I feel like I’ve covered this in previous posts, but it probably can’t be overstated. For as long as my sweet Momma was able, it was important to let her tell and retell her stories of her years as a nurse. The day would come when she could no longer recount those stories. At that point, it became my turn to tell her the stories I remembered her telling me. One such conversation went something like this:

Momma, I remember when the whole city of Milwaukee was snowed in and you stayed at the hospital and worked three days in a row because no one could get to work on the deep, snow-drifted roads. Then someone gave you a ride home on a snowmobile. First, you had them take you to the grocery store so you could buy your family food to eat, then he took you the rest of the way home. I remember that, even though you were very tired, you fixed us supper, then slept for a very long time.

Momma would tell and retell the story of her watch.

The story was actually a confabulation — a mixture of truth and her own version of the truth. As a nurse, she had always worn a watch with a sweep-second hand so she could take pulses the old-fashioned way. Momma still liked to wear the last watch she owned as a nurse. There came a day when neither story lingered in her mind. It was my turn to point to her watch and help her recapture that story, if only for a moment.

Oh, how my mom loved to work with children–her own and the children of others. In addition to being a very involved mom, she was also a leader of a local Brownie troop. Later, she would work for many years as the secretary for the Awana girls’ club. Her grandchildren adored her. No doubt the open-fridge policy had something to do with their love of spending time at their grandparents’ home, but their teenage years were nurtured and fed in more ways that food because mom and dad gave each of them a housekey and made sure they knew they were always welcome.

For my part, I loved to reminisce with mom about some of the special ways she blessed our family. I would show her photos of some of the fun times she had when working with kids in the Awana program.

One way I helped mom feel like she was still contributing something valuable was by inviting families with young children to come and share a meal with us. I would tell mom that the kids were hoping she’d teach them something about coloring, or help them with a hard puzzle. She delighted in those times around the kitchen table. As they colored, she’d proffer her wisdom in how to hold the crayon or colored pencil in such a way as to shade the color onto the paper evenly. If she was working on a puzzle with her little friends, she’d share a tip and demonstrate how to put puzzle pieces in color groupings to make it easier to find the piece needed.

Quit quizzing me with Who, What, Where and When questions. I would add Why to the questions we needn’t ask.

In the earliest stages of Alzheimer’s, mom seemed to struggle with the Who questions the most, followed by Where. Names which had been familiar would drop off her radar. As I spent more time with my mom, I learned not to ask her who she had lunch with on Sunday, or who taught the discipleship class she attended. As the names of family started to slip, I learned to slip the name of the person we were with into the conversation so that mom could be reminded of the name.

For instance, as her neighbor and friend, Gisela, was approaching to have a chat with mom in the front yard, I’d greet Gisela by name. Later in the conversation, I’d say something like, “So, Gisela, you and mom have lived in this neighborhood together for over 50 years, haven’t you?” Then the conversation could continue with mom and Gisela reminiscing about old times.

Minding our p’s and q’s in dementia caregiving helps ensure a smoother passage on the labyrinthian road in life marked by memory loss. Thus far in medical research, there are no fixes for this formidable detour of the mind. Caregivers with a well-equipped “caregiving toolbox” can bring roadside assistance and a little extra joy along the way.

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)

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.

Wisdom from the Lips of a Child

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

George being George

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

Grand-cleaner Violet

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

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

Artist Henry

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

Unfortunately, Momma’s battle with Alzheimer’s has progressed to the point we can no longer leave her alone (and I don’t have room for all 6 of us in our car – and, even if I did have room, Momma resists leaving the house). For some reason, even though we have fun together, I feel really bad when the grandkids come and we can’t “go” anywhere. But our oldest grandson set me straight when he candidly told me,
“Grandma, I love coming to your house so much. I love it more than all my toys and video games stacked on top of each other!”

My Charlie

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

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

Know Your Flocks & Herds

Proverbs 27:23-24 “Know well the condition of your flocks, and give attention to your herds, for riches do not last forever..."

Tangled Actuality

Journeys Through the Pathways of Dementia

Walking the path

Becoming alive again after a very long time

The Three Hairs

There's a book here somewhere.

garden ruminations

ruminate vb. to chew (the cud)

floweralley

Flora and fauna in a North Carolina garden.

Jennifer K Cook

Seeing God's Glory in His Glimmers of Grace

Back Road Ramblings

We're getting off the interstate and looking for life, love,and laughter on the back roads.

The Propagator

My plant obsession

Mitch Teemley

The Power of Story

Five Minute Friday

encouraging and equipping Christian writers

OnlineGardenTools

Your best garden tools and tutorials.