Finding Hope in Pink Slippers

Amy Bovaird suffers from Retinitis Pigmentosa, a progressive vision disorder. Yet she is the primary caregiver for her aging mother. Below is an example of how Amy finds hope in her daily adventures – even in a pair of pink slippers.

“Make sure you don’t drop my hearing aids,” my mother warned, as she did every morning. I’ve never once dropped them.

As a capable vision-impaired person, I rolled my eyes and feigned a pleasant tone. “Don’t worry. I won’t.”

Mom seemed impatient, maybe because her wrist hurt. After a fall down the stairs, she was scheduled for more X-rays.

I fumbled in the dim kitchen and tried to make hot tea to suit Mom. She insisted I pour exactly one cup of water into the kettle. Because it wasn’t a whistling tea kettle, my mother made it a competition between us as to who could see the steam rise first.

If she noticed it, she urgently alerted me. “The tea water’s boiling away! Hurry up, turn it off.” This time, thankfully, I saw the steam first.

Later, we moved to the bedroom so I could help Mom dress. After I snagged Mom’s cast in the sleeve of her robe, I tried to wrestle it free without hurting her.

When I lifted her long underwear shirt off, her head got stuck in the neck opening. “Hey! That’s my head, you know.”   

“Sorry, I couldn’t see. If you’re going to be mean, I’m not going to help you.”

“You’re the mean one.”

“I didn’t ask for this job, but this is what I have to do,” I mumbled, proceeding to help her dress.

Pink Slippers - Amy BLater that day, I said, “Here Mom, let’s take your shoes off and change into your slippers.” I bent over to remove her slippers.

She pointed to her left foot. “Look! You put one on backwards.”

“Are you kidding me?”

She laughed. “See for yourself!”

I noticed the dainty pink bow in the back of the slipper and laughed, too. How could I have missed that pretty pink bow? It reminded me of the finishing touch on a gift.

That’s when it hit me: with my poor vision and the stress of caregiving, I’d missed out on seeing Mom as a gift.

Too many times, we develop frustration toward the challenges God allows in our lives without realizing these are like speed bumps to slow us down and appreciate what He’s given us.

I needed to turn that slipper around in order to see the bow. Just like I needed to turn my feelings around in order to see that my beautiful mother was one of the greatest gifts God has ever given me. 

Amy Bovaird

Amy L. Bovaird guest posts on my blog today. She is a specialist in second language acquisition. Amy’s career has taken her to Latin America, South East Asia and the Middle East. Because she suffers from Retinitis Pigmentosa, a progressive vision disorder, Amy’s stories highlight her determination to see the world, even though for her, it may be just a little out of focus. You can read more of Amy’s adventures at www.amyboaird.com.


Why?

God has never answered my question, and I seriously doubt that he will. However, he is kind enough to let me rage against him, scribble in my journal and cry out my frustrations.

“Why have you let Alzheimer’s take over my mother’s brain? I still need her.”

I want her to tell me how to live with vitality and fun in my sixties like she did.

I want her in my life, not just physically, but also emotionally and spiritually. I want her to tell me how she dealt with the circumstances of her life and how she remained strong as Dad’s caregiver through ten long and bitter years.

I miss how she used to sing “I Wonder as I Wander” at Christmas while she rolled out spicy peppernuts on the kitchen counter. That was the only phrase she knew of that song, so I laughed as she repeated it over and over.

Every Christmas, I hear that echo as I roll out my own peppernuts and miss her all over again. In this Alzheimer’s state of physical health and mental decline, she no longer sings – unless someone starts one of the old hymns that triggers a memory.

I want to know how we are supposed to accept age with joy when we have no divine models for it.

Jesus, after all, died young. He was only in his thirties and he stayed dead only three days. How would he have aged if he lived into his eighties? How would he have dealt with his mother Mary if she forgot how to tie her shoes, how to cook his favorite meals or even – heaven forbid – forgot his name?

Was that even possible?

We are supposed to exercise, read, play board games and work in order to stay mentally alert. My mother did all of those things with regularity and discipline, so why didn’t that formula work for her?

Will it work for me?

In my novel, Reverend G often repeats the phrase, “The question may be ‘Why,’ but the answer is ‘Who.’”Why-Who quote

Even though I wrote those words and believed them when Reverend G said them, today and in this particular stage of my mother’s Alzheimer’s journey – I want to know more.

I believe God knows and he doesn’t have to tell me, but somehow I need to keep asking the question.

I know I’m supposed to trust him. Even while my soul is torn by the rejection every time Mom forgets what my son and I do, even when I feel guilty as I drive away from the assisted living – somehow I’m supposed to trust that God knows why and it’s going to be okay.

Maybe I believe that someday – he’ll answer.

©2013 RJ Thesman – “The Unraveling of Reverend G” – http://amzn.to/11QATC1

Long Distance Caregiving – Pray

Throughout this series about the LDC, I often alluded to the importance of prayer. Praying_Hands

My personal intercessory team lifts me up in prayer before every trip to Oklahoma.

My siblings know people in their churches, their cell groups and their networks who pray for them.

Certainly, we all pray for Mom. I pray that she won’t have to suffer a long time with Alzheimers and yes—I know what that means. I know that I’m asking God to take her home where she can be with Jesus, with Dad and with her parents.

What’s the point of pretending? Mom is a strong believer. Her faith is intact even if her brain is scrambled. I pray that God will release her to go home.

Every night and sometimes during the daytime hours, I pray for my sister. I’ve seen how her health has been affected. Stress wreaks havoc on our bodies, so I pray for my sister to find relief from the pain, to sleep well and to find the joy of living.

I pray for my brother as he juggles work on the farm along with his other job, his family and the dynamics all of that brings. I pray for him special grace because he works hard, and I ask God to bless him day after day.

Then I pray for me, that I will live with grace, even as the long distance caregiver. I ask God to keep me from trying to find comfort in things of this world or an over-abundance of chocolate.

I pray that as we live through this experience, I’ll be able to write books and blog posts such as this one, to encourage my group on Facebook (http://on.fb.me/15XgKN4), to speak at churches and other groups about how to find hope when life unravels.

Because in the end, Alzheimer’s does not win. What really counts is how we deal with our family dynamics and how we stay close to each other—even when we live far apart.

What matters is how we share what we have learned. Because that is why we are here. To love God, to make a difference and to leave well.

Part of that leaving well is a legacy of wisdom and experience for those who come behind us. To let them know that even within the journey of Alzheimers, prayer is still the best thing we can do.

Long Distance Caregiving – Emotional Dynamics

Living with Alzheimers and/or dementia causes a host of emotions—especially for caregivers.hands heart

Mom’s emotions aren’t that difficult. She lives in a contented land where all she has to worry about is where she put her teeth during the night and can she find her underwear the next day. Even then, somebody helps her with those questions.

But for the rest of us—whew boy! Until I entered this journey with my siblings, I had no idea of the emotions that might swirl around us.

As the LDC, there is of course, the emotion of guilt. But it is a false guilt, a self-condemnation because I can’t be in Oklahoma all the time, helping with Mom.

At the same time, I’m glad for my life in Kansas and the work I do. I’m proud of the ministry and the incredible women I help as well as my growing coaching practice and my writing life.

Guilt raises its ugly head whenever something happens, and I’m too far away to help. Then when I visit Mom, guilt rides home with me because I can drive away and my siblings can’t.

Another emotion that affects us is grief. One possible advantage of dealing with Alzheimers is that we grieve little by little rather than in one traumatic explosion. With each change and every increase in confusion, with each memory lapse, we grieve a little more.

We understand that these lapses will grow in frequency until Mom no longer knows who we are.

We also know that some day, Mom will stop breathing and this horrid journey will be over. So we don’t have to deal with a terrible shock of a tragic death. Mom dies a little bit every day, right in front of us.

Each time I drive to Oklahoma and then back to Kansas, it takes about 10 days to process my emotions, journal about them and return to some place of normalcy. I can only imagine the emotional toll on my siblings.

I don’t know if the emotions will ever ease, or if we’ll just grow in the need for more grace.

But that’s why it’s important that caregivers take care of ourselves—whether we’re right in the thick of it or dealing with it long distance.

Emotions can tear us apart or make us stronger. I hope to finish well.

Long Distance Caregiving – Regular Contact

As our loved ones journey through Alzheimers and/or dementia, it’s important that we keep in regular contact with the rest of the family.

hands heartEven though we live hundreds of miles away, we still have a significant role to play.

I call my sister each week and my brother about every other week. My sister is primary caregiver, and my brother lives in the same town—so both of them are available to check on Mom and spend quality time with her.

By contacting each of them, I receive a regular update about Mom’s journey through Alzheimers and the care she receives.

We talk about different things: sports, the weather and how it will affect this year’s wheat crop, the nieces and nephews and their activities. I give reports on my son and his school, his work.

Then we talk about Mom. “How’s she doing this week? Does she seem more content with her new living situation? Any changes? Any problems?”

Asking questions and hearing the answers helps me feel a bit more connected to what is happening in this process. Plus, it gives me ideas for how to pray—not only for Mom but also for my siblings.

Sometimes I hear the frustration in their voices. Sometimes I catch a bit of the anger and the grief that we all feel because our mom has Alzheimers. Sometimes I just want to hug my siblings through the cell phone towers and let them know how much I care for them, how much I miss them.

Another way I stay in contact is to send Mom a card each week. She keeps all her cards. She likes the ones with little animals or funny pictures.

So I go to the Dollar Store and pick out several of the colorful cards for children. Inside I write what has happened to me and my son that week, and I always sign it “Love you.”

Although Mom doesn’t say those words in return and she no longer writes her own newsy letters to me, I want her to know that this long distance caregiver loves her and wishes I could be near.

Ultimately, the LDC in me has to depend on God and his promise in Psalm 54:4, “Surely God is my help; the Lord is the one who sustains me.”

He sustains my siblings who are right in the middle of the situation. He sustains my mom throughout each 36-hour day, and he sustains me—the long distance caregiver.

What about you? How has God sustained you in this long distance caregiving journey?

Long Distance Caregiving

A friend recently encouraged me to define my role as a long-distance caregiver. How would a defined role help me deal with my guilt and anxiety whenever I drive away from Mom?

hands heartBut the more I thought about it, the more I liked the idea. Define my role and maybe even give myself a job description to confront this nasty Alzheimers diagnosis that consumes our family.

Certainly, those who care full-time for Alzheimers and/or dementia patients have the greatest stress. It is rightly described as the 36-hour day.

Yet each person in the family is affected in some way by this horrific disease that takes away our loved ones piece by fractured piece.

As the LDC in my family, I live 250 miles away from Mom. The rest of my family lives in the same area, our wonderful and cozy home town of Enid, Oklahoma.

For years, I have driven I-35 South on major holidays and whenever I could pull away from ministry here in Kansas. Now that Mom lives in assisted living, I still try to observe holidays and any other important family events. But I can’t be there all the time. Thus, the necessity of my title – the LDC.

What then is my job description? How can I best encourage my siblings and support them from such a distance? How can I help Mom or is that beyond possibility?

I believe my job description includes five topics, so I plan to focus on each of these in the coming weeks. The topics include: Keep in Regular Contact, Research for New Helps, Observe the Changes, Listen to the Caregivers and Pray.

Together, we’ll look at each topic and then discuss it. I’m interested to hear from other LDCs out there. How do you deal with being the long-distance caregiver? Let’s do this together and encourage each other in the process.

For in the end, our role is to enjoy our loved ones as long as possible and not kill ourselves in the process. We know that caregiving is stressful, but if we do it right – we can be a blessing to each other and make it through this unraveling journey.

Let me hear from you. We’re in this together.

Hiding the Words

During a recent hospital stay, my mother needed extra supervision. So, to give my sister a break from the constant strain of caregiving, I opted to stay with Mom in the hospital.

One morning, Mom seemed especially agitated so I asked her, “What’s your favorite Psalm?”

“Oh, probably 23,” she said.

In my purse, I always carry a small Bible so I pulled it out and started reading from the English Standard Version.

Mom nodded her head, but then looked puzzled as I read, “Even though I walk through the valley of the shadow of death, I will fear no evil.”

Mom peered at me from the sides of her trifocals and said, “I was thinking about the words while you read them. I thought it should be ‘Yea, though I walk through the valley.’”

“You’re right, Mom. You learned it from the King James Version which says, ‘Yea, though I walk.’”

Later, as she napped, I tried to smooth out the wrinkles in her hand. Such fragile skin. Almost no muscle or fat left on her entire body – this woman who once stood 5’8” tall and carried herself with self-respect and grace. This nurse who wore a cross necklace under her uniform to remind herself that she belonged to Jesus.

Somewhere deeper than the shadows of Alzheimer’s, entire passages of the Bible lay cached in my mother’s soul. Places where the beauty of the King James Version still lies, where a beloved Psalm is protected within a sacred compartment.

Those verses we learn as children and repeat as adults stay with us. In the repository that only God knows how to enter, the basics of our faith do not fail us – even when we forget our loved ones, even when we lose our language, even when we walk through the valley of death.

What a treasure to know that my mother’s faith still stands firm, based on the Word of God which has not failed her and never will.

King David confirmed it in Psalm 119, “I have hidden your word in my heart.”

And now my mother lives it, the truth of hiding God’s word so deeply in her heart that nothing on earth can steal it away.