Caregiver – Barefoot Lily Lady

Momma’s Prayers

Momma lived out her last years with Alzheimer’s. As her primary caregiver, I was honored to be an eyewitness to her faithful walk with the Lord, even as memories slipped away and her body failed her. I loved to hear her pray. May the Lord bless each of my readers with the grace to live life in the hard places like my momma.

Assisted Living: What to Expect

May this little missive of mine encourage someone navigating a similar road in life.

Engaging in conversations with the family members is one of my favorite things to do as I work on preparing desserts in the kitchen of BeeHive Assisted Living and Memory Care. Since both my mom and my brother have lived there, my heart knows what they are experiencing as they partner with Beehive to care for someone that they love. It has now been five years since my sweet momma left behind the shackles of her earthly body and mind and quietly moved into her heavenly home.

I’m sharing the post that follows in honor of my mom–a little reminisce of things mom and I experienced in the early days of her stay at BeeHive. When I wrote the post that follows back in 2019, mom was living in BeeHive’s first building. In the months that followed, she would sit at her bedroom window watching as the second neighboring building was constructed. God has blessed and a third building is now nearing completion. My prayer for BeeHive is that many more families will experience the care that my loved ones and I received. May this little missive of mine encourage someone navigating a similar road in life.

A Prayer for Grace

Just reminding myself of a little something my sweet momma wrote on this day back in 2016. Click on the link below to read what she wrote. May it bless your heart as much as it does mine.

It brings me joy when I find a little prayerful note written in my mother’s handwriting. Seeing what was on her heart and mind at certain times of …
A Prayer for Grace

Addressing Common Environmental Triggers in Dementia Care

I have three reasons why I would make this excellent article required reading for anyone even remotely involved in dementia care:

My mother had Alzheimer’s. I wish I would have been able to read this while I was caring for my mother with Alzheimer’s.
My mom lived in assisted living memory care for the last year of her life. She received fantastic care, but this would have been very helpful training for her caregivers.
My brother has vascular dementia and currently lives in a skilled nursing facility (a nursing home). I wish that everyone who works there would read this–it would be so helpful.

Environmental Triggers and Dementia

A-Z Caregiving Tips (R-S)

Time to revisit my little series of A-Z Caregiving Tips. The photo below is the article which inspired me to make my own A-to-Z list. Let me pick up where I left off and invite you to join me this week for R and S.

Repeat gently, looking toward me if I miss hearing something.

One thing we caregivers do a lot is repeat ourselves. When our loved ones have trouble understanding what we say, it’s important to repeat things. It’s also important to communicate in a way that includes facial expressions, which provide important information for our loved ones. Because my mom was also very hard of hearing, she relied even more heavily on my facial expressions.

The person who has dementia needs you to sit down on their level, look them in the eyes with all gentleness as you speak. I say “gentleness” because it is very easy to have a look of annoyance or irritation when you feel like you’re repeating something for the umpteenth time. Caregivers must be aware that the non-verbal messages we communicate with our body language and facial expressions speak louder than the actual words we speak.

Facial expressions can be difficult for people with hearing problems to understand when we’re moving. Think about how often we call out to someone in another room during the day. Or when we talk to someone in passing as we’re busy with other things. If you’d like more information on this topic, click here for another great resource.

(With all respect to the original author of this list, I didn’t quite see how standing up for the environment relates to caregiving, so let me proffer my own version of the letter S.)

Step back and take a break.

Being a caregiver can be very stressful. I often felt overwhelmed while taking care of my mom. During those moments, I had to take a step back and take a break from all the pressure. For me, that meant leaving my mom with my husband for an hour or two so I could go to the gym. Sometimes he called me back home, but most of the time, I was able to enjoy some time for myself and relax.

It bothers me when I hear caregivers lament that they have no one to help them. I know that it is too often the case; but more often than not, the reality of the situation is that they (we) are afraid to ask for help–or reticent to accept help when it is offered.

I believed I was the best person to take care of my mom, but I also realized that I wasn’t the only one who could do it. It was important for my well-being to take a little break sometimes. I would reach out to our church’s private Facebook page and ask for someone to spend time with my mom for a few hours so I could do something else. Most of the time, someone was willing to help.

There were times when a friend would say something like, “Hey, my daughter and I would like to stop by on Monday to color with your mom. What time would be good for you?”

I learned two important lessons: Ask for help, and never refuse an offer of help.

How Big is this Problem? Part 2

I just came from the post office and feel like I need to share an update related to the bumpy road of paperwork related to redetermining my brother’s Medicaid status. In my last post, I shared that I felt somewhat alone in the task of coming up with answers to the who, what, when, why and where questions on the lengthy MADR form (Medicaid Disability Redetermination Report).

Alzheimer’s Caregiver: Dealing with Aggressive Behavior

If you ever had the pleasure of knowing my mom, you would probably describe her as one of the kindest and most caring people you have ever met. Her sweetness was a predominant character quality, even as Alzheimer’s claimed more of her memories and abilities. I’ve written about her loving care for doll babies, and about how the nurse came out in her so often in her last year of life in assisted living memory care. Here are a few photos of her sweet self.

Sometimes, however, momma wasn’t so sweet. She’d take a swing at my head when I was kneeling in front of her trying to help her tie her shoes. She once threw a frozen dinner at my brother when he was sick in bed and started screaming at him. We theorize that she was just so very frustrated that she couldn’t remember how to work a microwave anymore–she wanted to help him, but didn’t know how. In assisted living memory care, a mean streak would occasionally surface when someone was assisting her with a shower. Mom wasn’t one to use profanity, but would very occasionally let angry words fly when someone was just trying to help her.

It wasn’t mom. It was what Alzheimer’s was doing as it ravaged her brain.

It can be very stressful for the caregiver when someone they love suddenly becomes combative and aggressive. Sometimes there are physical reasons why a loved one is lashing out – like pain, or a urinary tract infection, or frustrations over not being able to physically do something (like tie her own shoes, or stand without assistance).

Timing

For my momma, it was sometimes the timing of what she was being requested to do. We learned very early on that it was futile to awaken her for a meal or a shower—that was just begging for angry outbursts and uncontrollable tears. Sometimes she’d refuse food at mealtimes. We learned it was best to just let her be—she would often forget she was mad and be sweet as pie when you reintroduced the same plate of food a few minutes later.

Speaking of pie, we also learned that if we would “lead with sweet” by serving mom’s dessert at the beginning of her meal, she’d eat her dessert and then just keep going. It also helped to let mom bring Dolly with her to meals. Dolly didn’t eat much, but sometimes needed her face washed after meals.

Fear

Sadly, my mom oftentimes became very agitated and fearful at the prospect of taking a shower. This is VERY common. I first noticed it in the moderate stage of dementia. If a shower was suggested, she’d have every reason in the world not to do it now. She generally used stall tactics, like, “Later.” Or, “I already showered before you got here.” As the disease progressed, there would be no question about it—mom would NEED a shower. One of the wisest things I ever did as a caregiver was to hire help for bathing. I was extremely thankful for the aides who came to assist with this need. Their training prepared them for the ups and downs of performing the necessary hygiene tasks, and each aide had tricks up her sleeve as to how to help alleviate mom’s fear and anxiety.

There were times when even the aides were unsuccessful. Sometimes the best we could do was give mom a bed-bath or a quick wipe-down. I found it really convenient and helpful to use these disposable washcloths–they could be warmed in the microwave, which mom found very soothing.

My heart goes out to you caregivers who are dealing with combative and aggressive behavior with your loved one. Every situation is different, but I hope my experience with mom will help someone else get through this. If you’d like more information, you might want to check out this informative and helpful article, “Dealing with Aggressive Behavior”.

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.

Rewind: The Family that Cares

In talking with other caregivers, I realize all the more keenly how incredibly blessed I was to have an amazing support system. In a recent post, I (re)shared with my readers how my loving church family came alongside me to help me in caring for my sweet mom. Today I am (re)sharing another note that I wrote and published on Facebook in 2017–which was the year mom’s Alzheimer’s disease dramatically advanced.

Pressing the “Play Button” Again

You’ve put years of your life on “pause” so that you can provide the care your loved one deserved during the worst years of their life. Then, all at once, it seems, what you’ve known would happen all along finally happens.

They’re gone.

Yet, when it comes time to hit the “play button” and get on with your life, you discover you’re not the same person you were. The all-encompassing caregiving experience has changed your life.

So, you may ask, what has changed?

In addition to knowing more about Alzheimer’s than I ever dreamed possible, I have a whole new skill set. I work with certified nursing assistants and am continually amazed at how much of what they have learned in their training I learned by necessity.

I’m much more assertive than I was prior to caring for my mom. I learned this by being an advocate for my mom and my brother with their physicians and healthcare insurance providers. I learned to speak up for what was right while making countless phone calls to people and organizations who were preying on mom and helping her spend her modest pension and Social Security income. My newly acquired boldness helped me to relentlessly insist upon a refund from the companies taking hundreds of dollars from her every month.

Another thing has changed too. My eyesight. My physical vision is changing due to a pair of cataracts, but the vision I’m talking about isn’t physical.

It’s an internal ability to see the caregivers around me more clearly than ever.

Not long ago, my hubby took me out for lunch. I saw the caregiving granddaughter sitting in the corner with her memory-challenged grandma. While others probably tuned it out, I heard her gently answering her grandma’s myriad questions — over and over again. I heard this precious granddaughter sharing and resharing the “news” of her pregnancy and the baby who would arrive in July – to the beautiful and heartrending delight of that baby’s great-grandma. I could see that granddaughter rewinding bits and pieces of her conversation: that she lived just down the block from her grandma, the names and ages of her children, what they were doing in school, and all of the details about which her grandmother was curious.

With caring for Momma behind me, and eyes that are now wide open to the world of dementia caregivers, it’s my heartfelt desire to press life’s “play button” again—this time purposefully engaging with and caring for the caregivers I encounter all around me.

I am a caregiving daughter forever changed by Alzheimer’s.