Television Becomes Mom’s Companion

As I entered the assisted living facility and walked down the hallway, I heard Mom’s television. I knew what I would discover even before I knocked on the door.

televisionMom sat in her maroon recliner, watching but not really comprehending the images on what she calls, “The Idiot Box.”

Television was never a revered object on the farm. In fact, the set was turned off after the evening news so that my siblings and I could finish our homework or start reading a new book. The only sound in the house came from the old stereo and Dad’s many classical albums.

So nowadays, it seems odd that Mom’s television booms its sounds not only throughout her room, but also down the hallway.

Whether from boredom or loneliness, the need for some type of humanity in her room, Mom turns on her television and powers up the volume. Her hearing has slowly declined.

She does not use her hearing aid because it only gets lost or in her mind – stolen. Truthfully, the design is not easy for older folks with shaky hands as the tiny battery has to be removed after each wearing and replaced every time she inserts it into her ear. The order of tasks seem impossible, so Mom just ignores it and goes without.

My sister is the keeper of the hearing aid, so she takes it home for safekeeping, then instructs Mom all over again every time she needs it.

Mom turns up the volume on her television and mindlessly watches shows she cares nothing about. I turn down the volume so we can talk.

“I hate the TV,” Mom says. “I’d rather read a book.” She points to one of the many books in her stack that she reads over and over again, reaches for one of the Reader’s Digest condensed versions and opens it. Occasionally, she looks at me and asks one of the many questions we have just talked about.

The core values of the Alzheimer’s patient do not always coincide with their behavior.  What the heart and mind believe does not always jibe with action.

So Mom’s television is another reminder of the difficulties of communication. When Alzheimer’s overshadows a behavior that is not consistent with life’s memory, all we can do is seek patience and another level of understanding.

The television is now Mom’s companion, the noisemaker in the room, but it will never replace the life story of a woman who read voraciously and made sure that her children also learned to love books.

©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 – Observe the Changes

Because I am the Long Distance Caregiver in our family, I see Mom only on major holidays or when I manage a few days of extra vacation.

The hard part is that I rarely see my family and miss them all the time. Yet the positive aspect is that I easily observe the changes in our mother’s Alzheimer’s journey.hands heart

As Mom slips away with each visit, I notice her drawn face, added confusion and the fear that has always plagued her—now increasing. Because my siblings see Mom all the time, I am often more aware of the subtle changes.

I share these observations with my siblings so that we can make the important decisions that will help Mom through each stage.

The delicate balance is that I can’t just breeze into town, tell everybody what I’ve observed and expect them to listen to my incredible advice.

Just because I’m the oldest doesn’t mean I’m the smartest or the most discerning. It just means I’m the oldest. Darn it!

But even one of my relatives once told me, “I’ll be you can see the changes easier than we can.”

Yes, that’s true. During the Easter holiday, I noticed how withdrawn Mom had become. Was it because her hearing aid needed adjusting or had she lost more comprehension? Was she not able to understand conversation as easily as she did at Christmas? A few months makes a world of difference to an Alzheimer’s victim.

Mom and I share some of the some personality traits. We’re both choleric, Type A’s—those get- busy-and-get-it-done women who organize the world while telling everyone what to do and how to do it.

My life experiences and my training as a life coach and a Stephen minister have taught me to temper my choleric self, to listen carefully and help people see the solutions themselves.

So even though I might see the changes, I can’t march in and suggest a solution. No solution exists for Alzheimer’s. All we can do is persevere through each 36-hour day, hang on to our faith and pray for everyone involved.

Together, my siblings and I make an awesome team. My sister is smart, and my brother is wise. I add the fresh eyes to observe Mom’s changes.

As a family, we blend our love for Mom and our life experiences into the best caregiving unit we can possibly be.

Still, observing the changes in Mom also helps me see the changes in all of us as we age, deal with the stress and search every resource for the best way to make it through this journey.

May God help us that even as we observe the changes, we may also have the grace to accept them.

2013 RJ Thesman

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.