Mom

The Alzheimer’s Slush File

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Is there a file somewhere that holds all the things Alzheimer’s patients lose? Sometimes those items are imagined, but even so – the person struggling with Alzheimer’s is convinced the object exists yet has simply disappeared. Where did it go?Alz Slush File

My mother has lost a seersucker pantsuit. As far as I know, she never bought a seersucker pantsuit although she always wanted one. However, this suit is so real to her, it must exist somewhere in the universe, if not hanging in her closet. Perhaps she did buy one, at some point in life, but now – it has disappeared. Where did it go? Does it wait in an imaginary file that is hidden from the world of realism?

We no longer take jewelry to the assisted living facility where my mother lives, because it will disappear. Then Mom will accuse someone of stealing it. And truthfully, when Mom loses something, it cannot be found.

Jewelry has disappeared as well as the infamous seersucker pantsuit. How do you lose a pantsuit? Seersucker or any other variety? This puzzles me.

We dare not take Mom’s hearing aids to her room, because lost hearing aids cost a bundle to replace. So my sister has become the Guardian of the Hearing Aids, producing them only when Mom goes to church or joins us for a family outing. The rest of the time, Mom just doesn’t hear well. She turns up the volume on her TV and when someone talks to her, she asks, “How’s that?” “What?” “Huh?”

Mom has lost socks – but then, who hasn’t lost a sock. They are constantly running away from home or disappearing into dryer vents or someplace where nobody can find them.

Mom has also lost other clothing and important documents. We know better than to leave any legal papers with Mom. Her collection of greeting cards that people send her sit in a basket, waiting for her to reread them. So far, she has not lost the basket.

Because Mom is always giving things away, she sometimes thinks she has lost something when she actually gave it away. She often wins at Bingo, so then she has Snickers candy bars and doesn’t eat them. She gives them to grandkids, then doesn’t remember giving them away – so they are then lost and hiding in the Alzheimer’s Slush File.

It doesn’t really matter, I suppose, if Mom loses some things – as long as they aren’t major items like hearing aids. The problem is that the disappearance of items causes Mom additional stress and we don’t need that.

The other problem is that I’ve wondered lately what has happened to one of my favorite rings. I have no recollection of taking it off and putting it somewhere other than where it belongs. I have looked in every suitcase, every jewelry container and every dresser drawer. My ring has disappeared. It only cost me five dollars, but I liked it because it sparkled and matched lots of different outfits.

I have, of course, prayed, “Oh God, oh God, I have lost my ring. Please, please, please don’t let me have Alzheimer’s. Please let me find my ring.”

He has not answered. I think my ring might be hiding with the seersucker pantsuit.

©2014 RJ Thesman – “Intermission for Reverend G” – http://amzn.to/1l4oGoo                                                         Finding Hope When Life Unravels

Guest Post – Lip Reading Mom

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LipReading Mom, aka  Shanna Groves, was diagnosed with progressive hearing loss after the birth of her first child. She was 27. Since then, she and her husband have added two more children who provide creative fodder for her writing. Her books include “Lip Reader” and the just-released “Confessions of a Lip Reading Mom.”    Confess_Cover_with_frame

Through her blog and speaking events, Shanna advocates for hearing loss awareness through projects such as the Lipreading Mom Captions Campaign, Show Me Your Ears, and Stop Hearing Loss Bullying. Follow Shanna’s blog at LipreadingMom.com and learn more about her other activities at ShannaGroves.com.

Q: Tell us a little about your background and how you became interested in writing.

A: My first foray into writing was in middle school when I joined the yearbook staff. One day I learned that I had won the Outstanding English Student Award for my school. A gigantic trophy and tons of writing confidence followed.

I grew up in Oklahoma and Texas and developed quite a memory for people I met and places I saw. All those memories came in handy years later when I became an aspiring novelist. Knowing how to write helped channel my feelings about living with progressive hearing loss.

Q: What led you to write “Confessions of a Lip Reading Mom?”

A: Biographies and memoirs are my favorite genre. A writing instructor once asked what was so special about my life that it warranted a book. It took eight years for my life story to materialize into “Confessions of a Lip Reading Mom.”

I had to live life, not just write about it, in order to have a story worth telling. My book is about living with hearing loss while taking care of children, living with depression, and trying to make sense out of a progressive health issue. Writing this book was my therapy. Shanna

Q: What is “Confessions of a Lip Reading Mom” about?

A: In 2001, I became a new mom to a healthy seven-pound boy. While on maternity leave, I noticed a persistent ringing inside my ears. The doctor’s diagnosis: progressive hearing loss in both ears; cause unknown. My book spans the first six years of my life as a hard-of-hearing mom.

How could I take care of my babies if I couldn’t hear their cries from the other room? Would I become completely deaf and if so, how would I communicate with my children? The doorbell’s chime, the phone ringing, and my toddler’s first words were silent.

After two years of denial, I began wearing hearing aids, but I didn’t like them. They magnified the sounds I didn’t want to hear, such as temper tantrums. Eventually, I learned to navigate the uncertain waters of hearing loss.

I became an online hearing loss community advocate, known as Lipreading Mom. This wasn’t my lifelong plan, but it is something I have come to embrace. Besides being a wife and mom, I believe my purpose on earth is to tell this story.

Q: Where can readers find your book?

A: “Confessions of a Lip Reading Mom” is available on Amazon and Amazon Kindle, as well as my publisher’s website: www.CrossRiverMedia.com.

Shanna’s contact info includes: Email sgrovesuss@msn.com Twitter www.Twitter.com/LipreadingMom Facebook www.Facebook.com/AuthorShannaGroves

Long Distance Caregiving – Pray

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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

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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

What Alzheimer’s Teaches – Part 3

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Part 1 of this series encouraged us to be patient. Part 2 reminded us that each day counts. What is another lesson that Alzheimer’s Disease can teach us?

Make Positive Memories.Number 3

When our memories begin to deteriorate, we’ll want our children and other family members to remember good times we’ve shared together.

Life is so busy with work, school and more work – with paying bills, facing conflict and fear. But in the midst of all the hubbub, we need to make positive memories.

Because each day is important, we can spend those 24 hours doing things together that will give our loved ones the opportunity to say, “Remember when?”

One of my favorite memories about Mom happened when I was 11. We were at the library where we visited weekly and checked out stacks of books. I browsed through the young adult section but couldn’t find any books I hadn’t already read. So I wandered into the adult section and chose two of those books.

However, when I tried to check them out, the librarian told me I wasn’t allowed to check anything out of the adult section.

Mom found me crying behind one of the shelves.

“What’s wrong with you?” she asked. Mom was never a nurturer and if we cried, then there’d better be a  good reason.

I told her what happened. She grabbed my hand and marched with me to the main desk where she confronted the librarian.

“I understand you won’t let my daughter check out these books.”

“Shh,” said the librarian. “Ma’am, these books are from the adult section and your daughter isn’t yet an adult. We can’t allow her to check them out.”

My mother stood her ground with every bit of her 5’8” stature and said, “May I remind you that my taxes pay for the electricity in this building, and the books…and your salary.”

I thought Mom was ten feet tall.

“But ma’am,” said the librarian in her whispery voice. “We just can’t allow….”

“Do I need to speak to your superior or to one of the board members for this public library so that my tax money will be used properly? There’s nothing in these books that will hurt my daughter, and if she wants to check them out – then she’s going to check them out.”

I left that day with “The Grapes of Wrath” and “The Autobiography of Eleanor Roosevelt.” I read them both and loved them, and I never had trouble checking any books out of the library again.

I imagine that somewhere in that library system, there still exists a 3×5 card with my name on it and a notation, “Beware of Mother.”

That was my mom. She fought fiercely for her kids, and I treasure the memory of her bold love.

Tip # 4 for Caregivers

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Remember.

When I grit my teeth, because I’ve told her seven times, “Put in your hearing aid” – remember how she reminded me to wash my hair and brush my teeth.

When I have to help her get dressed – remember all the times she dressed me and plaited my hair into braids.

When I struggle to get her shoes on – remember how she taught me to tie my shoelaces and practiced with me hundreds of times until I got it just right.

When I have to repeat the same statement over and over – remember how she read my favorite book to me over and over.

When she’s cranky – remember what a bad mood I carry around when I’m sick.

When I’m too busy to call or visit – remember how she came home from working a 12-hour day, changed her clothes and put supper on the table, then drove to the gym so she could watch me play basketball for three minutes.

When I don’t know how I can fit her into my schedule – remember how she rearranged her schedule so that I could take piano lessons.

When I’m discouraged because Alzheimer’s is taking her away – remember that life is fragile and one day in heaven, she’ll be completely well.

Remember.

Tip #2 for Caregivers

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Here’s one of the tips Reverend G might tell her loved ones: Don’t Argue with Me.

You might wonder…who would argue with Reverend G? But for caregivers who deal with Alzheimer’s and dementia patients, arguments sometimes happen. I’ve seen this in my own family.

With her paranoia, Mom often makes up the most elaborate stories. “Someone came into my house and stole my checkbook. Then she took it to the bank, forged my signature and stole all my money.”

This story was of course, ludicrous, but it did not help to say, “No, Mom. That didn’t happen.” She was convinced the story was real and so we argued back and forth about the phantom forger, “Yes, she did,” and “No, she didn’t.”

I’ve learned that instead of arguing, I should ask questions. “Now, Mom, how do you think this person broke into the house? No doorknobs have been broken. No windows are shattered. And how did this person possibly forge your signature when hers is so drastically different?”

By asking questions, Mom is then forced to consider answers rather than arguments. Mom no longer has the ability to reason, so after a few questions she forgets all about the story – until she brings it up again. Then we start all over with more questions.

It takes a bit of practice and perseverance to ask questions instead of arguing. But arguments do nothing to solve the problem and only bring more frustration to both parties. Instead, open-ended questions help everyone settle down and realize that this particular story is not true.

And who of us wants to debate when there’s so little time to just love? It’s so much better to acknowledge that our loved ones have a legitimate concern, treat them with respect and just ask questions.

The Golden Rule of Alzheimer’s is: Treat your loved ones the way you want to be treated in fifty years.