Momma – Page 4 – Barefoot Lily Lady

The Decline: Bumper Car Wheelchair

As a kid, there was one ride at a carnival or theme park where you would rarely see me:

bumper cars

I hated them.

Sorry, I don’t have a personal photo to illustrate this paragraph; if I did, I would be the terrified looking kid (or adult) stuck in the corner with everybody crashing into me. There was nothing fun about it.

I can probably count on one hand the number of times I have allowed myself to be in a bumper car. Each of those times my participation was only under great duress from a friend. The last time was when my kids were small (and super cute), with big eyes and sweet voices that pleaded, “Puhlleeeze, Mom!” So, I acquiesced and ended up in another corner – this time my own kids taking devious joy in crashing into me. I can smile about it now, but back then I couldn’t wait to get out of that car!

You might be wondering why I even bring up this crazy aversion related to bumper cars. Something I saw in my momma’s world today reminded me of my scary experience with bumper cars. Let me tell you about it.

As I mentioned in one of my last posts (you can read it here), mom has been closing her eyes to the world around her. Perhaps she is just tired, but I think it is her way of shutting out some of the confusing stimuli. Living life with her eyes closed may offer a measure of control over her world. In combination with her inability to hear, closing her eyes may bring peace and control to her chaotic world of life with Alzheimer’s. Nowadays, she eats most meals with her eyes closed; a bit messy and effectively shuts out any interaction with her table-mates. When she is offered the medications she takes, Mom often refuses by closing her eyes tight. In effect, she makes the unpleasant things in life disappear, much like a child who thinks you can’t see them if they cover their eyes and can’t see you.

Mom’s latest eyes closed activity has been fiddle-footing around in her wheelchair with her eyes closed. Watching her bump into walls and other obstructions in her path reminds me very much of driving a bumper car with her eyes closed. Over and over again, she’ll try to propel herself through a doorway, not bothering to open her eyes to see that she is hung up on the door frame. As afternoon anxiety seeps into her consciousness, she will bump-bump-bump her way around her room, sometimes getting stuck in a corner and then whimpering that she is stuck. When offered help, she often refuses and continues to whimper about her stuck-ness, rather than accept help from someone who cares about her.

As I watched my mom struggle with this today, I was reminded of another person who has similar self-imposed blindness.

Myself.

How many times do I keep bump-bump-bumping into obstacles to growth in my life without bothering to open my eyes to my need for help?

In an effort to encourage us to apply the truth of God’s Word in our lives, our pastor likes to give us homework at the close of his sermons. I try very hard to complete at least one of the three suggested assignments each week. This week’s sermon really challenged me and one of his suggested assignments really resonated with me. So here’s the assignment I’m prayerfully considering this week:

“Who have I invited to help me grow spiritually?”

Wordless Wednesday: I’m Still Here

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.

Friends Together

Mom and I had a special moment yesterday. I happened to be taking a video of her rocking Dolly back and forth when she said this …

A precious moment with Momma

Yes, Momma. I’m so glad we’re friends together.

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

Doll Therapy: Comfort for Momma

Our Family’s Decision

The past few days have been especially wonderful. Even though it sometimes felt like I was always cooking, having our kids and grandchildren gathered here and being surrounded by family refreshed my spirit.

Three nights in a row of good sleep didn’t hurt either.

Yesterday, our children, along with our three lovely granddaughters, lovingly came alongside us in support of a decision that Wayne and I had already prayerfully made. A spot in a lovely memory care home has opened up for my mother. Together as a family, we acknowledged that my mom deserves to receive the 24/7 care I can no longer give her.

This has been an especially hard decision for me, as it has always been my desire to walk Momma all the way “Home” here in our home. Now that mom is under home hospice care, it seemed like we were almost there. But God has given our family wisdom and showered me with peace in the midst of my tears.

Last night, Mom was out of bed before our Friday date night caregiver left our home at 10:30 p.m. Bless sweet Kathryn’s heart, she tried so hard to get mom to bed and asleep before her shift was over. It was not meant to be. Sleep would not come for Momma until a few minutes before 5:00 a.m.

Today I’m feeling physically worn out and emotionally spent. The frustrations of my sleepless night and my groggy, bone-weary body served as confirmation that the decision we made as a family is the right one.

Nine days from now it will be different.

Round-the-clock care will be available to redirect my tired and anxious mother back to the safety of her bed while I am sound asleep in my bed a few miles away. There will be no more trips up and down the stairs between my bedroom and hers all night long. No need for cameras and a video monitor to keep tabs on Momma. No need for baby gates, a multiplicity of grab bars, wheelchairs, walkers and bedside potty chair. Someone else will vigilantly monitor and carefully dispense drugs, change and launder soiled clothing and bedding, cajole her into bathing (and washing her hair), and keep her from wandering away.

I find comfort in the hope of being able to attend school concerts, participate in church activities, go to the gym more regularly, travel with my hubby, take an unhurried bath, have impromptu play dates and sleepovers with my grandkids, and play in garden dirt whenever I want. The list of all the things I’d like to do now is very long indeed.

As much as I look forward to finding our new normal, I also understand the transition will not be easy–for her or for me. The tears which trickle down my cheeks without warning remind me that I will miss taking care of mom. It has truly been an honor and a privilege and the hardest thing I have ever done.

Caregiving truly is the hardest job I ever loved.

Tuesday Caregiver Tip: The Christmas Letter

It’s a dilemma you might face as a caregiver. The one you’re caring for customarily sent out Christmas cards. How do you help them now when they can barely sign their name? Continue reading “Tuesday Caregiver Tip: The Christmas Letter”

Change is in the Air

God used last year’s hospitalization to help me see Mom needed to live with us.

Just over one year ago I wrote, “Honoring Your Parents: Nursing Home or Your Home?” (I invite you to read it here.) In that piece I endeavored to describe the process which had guided my decision-making related to caring for my mother as she slipped further and further into the horrible world of memory loss. Countless decisions have been made since moving my mother from Milwaukee to our home in Fitchburg. Each decision to be made along the way was generally preceded by some sort of adversity which required a change. We prayed about each change, each process, and each decision. Our faithful God always answered, shedding light on each uncertain step.

Change is in the air once again.

Mom’s advancing Alzheimer’s and a few recent difficulties have made it abundantly clear that we need to prepare for what the next level in mom’s care might be. There have been many “nudges” toward planning for the possibility of mom’s future care taking place outside of our home setting. But three things in particular:

A gentle nudge in the form of a well-timed question from Diane, mom’s palliative care nurse practitioner. “So, have you considered what the next step in your mom’s care might look like?” We had a good chat about that, and she gave me several helpful suggestions.
My hubby’s trip to India. I had to ask myself what I would do if something happened to him and he could no longer help me. Even though my family and friends rallied to help me out during his trip, it became very clear that caring for mom on my own would be at too great a risk to my own health and welfare.
My own frailty. I took a fall down a short flight of stairs in my own home. Aside from a scrape to my leg, a few sore muscles and toes, the greatest injury I sustained was to my own pride. The fall served as a wake-up call causing me to consider how Wayne would care for mom if something happened to me.

In the past year, I’ve looked at the websites of many assisted living places, have talked with a few representatives on the phone, traded emails with yet a few more, and even toured three that I liked and thought might be able to at least provide some respite care. In each case, I could not imagine my mother living there. After my little chat with Diane, I looked into a newer one she suggested and rated very highly. BeeHive is a 16-unit specialized memory care facility designed to look and feel very home-like. It is ideally located in Oregon just a few miles down the road from us, and about a mile from the nursing home where my brother resides.

Wayne and I scheduled a visit in early September before his trip to India. I was favorably impressed as I watched staff interact with residents. Compassion and respect were palpably present. We met Gina and Andy, two of the owners, and felt their pride of ownership and desire to serve their residents.

Standing on the sidelines, I watched one sweet lady receiving a hand massage. As the aide gently applied lotion and stroked her delicate hands, she looked into this resident’s eyes and spoke with her like she was a familiar friend. I knew in my heart this was the right place. A puzzle was in the works at a nearby table and I could hear one resident talking to another in friendly banter. Yes, I could definitely picture my dear Momma sitting at one of the tables, working on a puzzle and telling (or re-telling) one of her many tales.

After some discussion and prayer, we decided we would put down a deposit to reserve a place for mom. She is currently number four on their wait list. While it is still my heart’s desire to keep my mom at home with me until God calls her to her heavenly Home, I have great peace knowing I have another level of care reserved for her. My greatest comfort comes in knowing the One who is guarding our steps as He walks before us paving the way for whatever our future holds.

I know in my heart that my dear mother would skip along to heaven tonight if she could. Nearly every day she tells me so. Momma’s greatest comfort comes in knowing that Jesus promised He has a placed reserved for her in heaven.

Five Minute Friday: Balance and “Oasis Moments”

This post was brought to you (a day late, I know) courtesy of Kate Motaung’s blog Five Minute Friday and the word “balance.” Writers set the timer for five minutes and then free write on the word of the week. Check out more great posts and find inspiration for writing here at Five Minute Friday.

Things have been quiet on my blog. Good sleep is rare. Interrupted at best. Most days I live life in a sleepy fog. In my exhaustion, I’m having trouble staying focused enough to write. A few of my friends have recently heard my silence and inquired as to my well-being.

My friend Sue wrapped me in a big hug on Sunday and told me that she was quite concerned. She had observed that caregiving seemed to be taking its toll on me, noting that I looked really tired. I was not the least bit offended by her basically telling me that I looked terrible. It’s really hard to cover up exhaustion. God knew I needed this confirmation of what I already knew. Sue’s concern and assurance of prayer meant the world to me.

Rita caught up with me a few minutes later and kindly inquired as to how momma is doing. This sweet friend is known for her ability to see a need and step in to help. I have been on the receiving end of her prayers wrapped in practical ministries of help. Her loving and thoughtful ways have often helped me find balance as a caregiver as she sits with my mom while I try to get some sleep, or hangout with my grandkids, or take my brother to a doctor’s appointment, or go out to dinner with my husband. Her kindness refreshes my spirit.

Yesterday I heard the familiar “chirp” of my phone indicating that I had received a text message. My heart smiled when I saw it was from my friend Barb – also my sister in Christ, and former co-worker (from way too many years ago).

“How are you and your momma doing? Haven’t seen anything on FB lately.”

It’s been more than 20 years since Barb and I worked together, but we’ve managed to keep in touch via Facebook, chats via Messenger, and occasional lunch get-togethers at a restaurant somewhere between my here and her there. It has been awhile since I’ve been able to get away and have lunch with Barb, but her little “I noticed you” via text meant so much. It felt good to sit in my favorite chair wrapped in a soft blanket and “chat” for a bit about what’s going on in our lives.

Amazing how a timely word from a friend can bring a little balance to your life when life feels weighed down and precariously listing toward one side.

This morning a message from another friend, Danielle, popped up on my phone.

You’ve been in my prayers a lot recently, especially since I haven’t seen too many posts about your mom. I know I didn’t post much about Tim as things got worse, so I’m assuming things are really hard right now.

She was right. Danielle knows firsthand what life as a caregiver can be like, as she takes care of her father-in-law in his struggle with memory loss. She walks this really hard road a few steps ahead of me and knows how to pray…and she does pray.

It’s not just these four friends who’ve helped me find balance. It’s my hubby who helps in countless ways, the friend who buys me a coffee on a whim, or the one who pops a surprise care package or a sweet card in the mail. Or the thoughtful neighbor who recently rang my doorbell and asked me to point him in the direction of something that needed to be done in my garden.

I’m so thankful for each and every one of the wonderful people God has put in my path. Through your prayers and acts of kindness, God refreshes my soul with “oasis moments” and helps me find balance in my life as a caregiver.