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

I could never forget you

It makes me a bit sad when I re-read this post and am reminded I wasn’t able to care for mom in our home until the very end of her journey on earth. But, only a tiny bit sad. I know in my heart that moving her to BeeHive Assisted Living and Memory Care in her last year on earth was the right thing to do. BeeHive was so much more than a “place for those waiting to die”. The decision to move her into memory care provided her with so much more meaningful interaction, activities, opportunities to move about, more variety in her meals, and lots of tender loving care. I am beyond grateful for the time spent with her — I know that is something I will never regret. I’m thankful for a husband whose wise investments meant that she would not “run out of money” as she had often worried. It was enough. God is good…all the time.

Barefoot Lily Lady

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…

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Memories of Mom

Tuesday’s Caregiving Tip: Keep a journal of those special moments with your loved one.

To my fellow caregiving friends who are still in the hustle and bustle of caring for a loved one with dementia, be sure to take time to write down those special moments. I wish I had kept an actual chronological handwritten journal, but am so glad I blogged and took photos…and posted cute stuff on Facebook.

I moved in with mom for a period of about 9 months. It seemed long and tedious in the midst of it, but just a tiny blip on the radar of life in retrospect. I’m glad I posted this fun memory on Facebook and hope it will bring a smile to someone’s face today.

Me and my landlady

A-to-Z Caregiving Tips (F-G)

This is the third in a series of posts inspired by 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 Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey.

Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey. [Click here to read the original article].

Fear not if I take a break from commotion.

We were celebrating a birthday at our house. Mom sat at her place at the table and enjoyed watching the festivity and seeing a few of her great-grandchildren. Though she didn’t contribute much to the conversation, my heart was warmed by her smile as she watched the birthday boy bask in the attention. After the candles were blown out and the cake was served, mom quietly stood up with the help of her walker and then scootched down the hall the short distance to her room. She was done with company. And that was okay.

On a previous occasion, when mom was living in a senior apartment, the residents were hosting Trick-or-Treat for the neighborhood kiddos. During our city’s Trick-or-Treat hours the residents gathered in their activity room and waited for the steady stream of costumed guests. I thought mom would enjoy seeing all of the kids and handing out candy with all of the other seniors in her building. She stayed for a few minutes, then went back to her apartment; it was just too much for her. I had invited a few kids from church to come to the event. When they arrived, I invited them to visit mom in her apartment. Mom enjoyed the smaller gathering so much more.

During this phase of her journey with Alzheimer’s it became my mission to keep her engaged by inviting people to see her. One or two people would join us for lunch; another day someone might come over to say hi and work a puzzle or engage with her by sitting with her at the table coloring. One family from church brought us pizza for supper one evening, then stayed for a bit so the girls could sort through a jar of buttons with mom.

Go with me and others on quiet nature walks.

May be an image of 1 person and smiling

Truth is, in the later stages of dementia, most days it was nearly impossible to get my mother outside of the house for a little fresh air. It was a treat when it happened.

If the weather was nice and I could coax mom outside, I’d get her seated in a wheelchair and push her to our neighborhood park.

She enjoyed watching the children play at the splash park, seeing dogs being walked along the pathways, and would occasionally engage a perfect stranger in conversation.

We didn’t stay long, as the charm of our outdoor excursion would soon be replaced by the fear of being able to find our way home. By the time I got her back in the house, she had already forgotten our little trip. Even though it was forgotten, the benefits of the fresh air and the infusion of joy would linger in her demeanor.

One day, out of the blue, mom wanted to “check the mail,” so I let her go outdoors with her walker. She enjoyed that little trek down to the curb and back.

Since she was in a good mood, dressed decently, and it was nearly dinner time, we decided to put her in the car and go for a drive to the nearest Culver’s for supper.

She thoroughly enjoyed every bit of it…especially the frozen custard.

Once my mom made the move to assisted living memory care, getting her out of the front door was even more rare. This photo shows one of those sweet occasions when her great-granddaughter Violet managed to get her outside to sit on a shaded patio.

As Alzheimer’s continued its relentless march claiming bits and pieces of my mom’s brain, it was evident that mom’s world was shrinking right along with her memory. All too soon there came a day when the world outside of Mom’s front door became too scary of a place for her to venture.

That was the day when “go with me” became “be with me.”

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.

Everyone needs a good neighbor

Not long ago, I pushed Momma in her wheelchair out to the commons area so she would have a change of scenery and perhaps engage with others and be distracted from her current woes. As soon as she saw the other people, she planted her feet so I couldn’t push her any further, then said, “Oh, no! I’m not going there! None of those people like me.”

Just then, I believe, God sent a lovely lady named Lola to gently engage Mom in conversation. After a bit of small talk, Momma asked Lola which room she lived in. Lola pointed to her husband Roy’s room just two doors away and reassuringly patted my mother’s arm and said she was very glad to be Momma’s neighbor.

Thank you, Jesus! Just what Momma needed.

Photo credit: Kathleen Zelinski

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