Just Squeeze My Hand: A Caregiver's Experience with Frontotemporal Dementia

By Manuel "Manny" Moncivais

This is a love story of a twenty-six-year marriage that was extended with a six-year slow death sentence due to the dreaded mental illness, Frontotemporal Dementia. Frontotemporal Dementia affects approximately 50,000–60,000 people (Knop, 2011 cure PSP). Frontotemporal Dementia can start in the forties age group, making it very difficult to diagnose. This story describes the challenges of a caregiver to initially know what the actual diagnosis was because it was a hard disease to diagnose.

This story also describes this caregiver’s steps in caring for his wife until her very last breath. The author’s main goal is to help others who may have someone with Frontotemporal Dementia symptoms, or other terminal illnesses, and how to deal with the huge task as a primary caregiver. Information for support groups are also available for the caregiver and patient. Any critical information that can help a caregiver will be highlighted in bold and italics for quick reference in this book.

• Language: English
• Publisher: Christian Faith Publishing, Inc.
• Release date: Nov 10, 2021
• ISBN: 9781098086480

Book preview

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Just Squeeze My Hand

A Caregiver's Experience with Frontotemporal Dementia

Manuel Manny Moncivais Jr.

Copyright © 2021 by Manuel Manny Moncivais Jr.

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods without the prior written permission of the publisher. For permission requests, solicit the publisher via the address below.

Christian Faith Publishing, Inc.

832 Park Avenue

Meadville, PA 16335

www.christianfaithpublishing.com

Printed in the United States of America

Table of Contents

I Just Said You Were Real Pretty

The First Dates

I’ll Wait for You

Our Beginnings

Lost!

Visiting the Neighbors

The Spaghetti Is Not the Same

The Diagnosis

The S.O.S. Team

Sylvia

Sundowning Syndrome

A Different Quality of Life

The Red Hat

The Makeup and Dresses

Hospice

The Last Week

The Last Day

Remains Day

Church Retreat: The Wife’s Prayer

To Remember Me: Robert Noel Test

Do’s and Don’ts

Support Groups

To Diana for your unconditional love for all of us.

To my sons, Marc and Noah Moncivais, never give up!

To Diana’s family, the Garcias, the Conways, and the Rios.

To my parents, Mr. and Mrs. Manuel Moncivais.

To my family, the Garcias and the Rinis.

To the Hill Country Bible Church’s S.O.S. team.

To Wayne Schomaker and Jackie Gilfillan.

Para Sylvia Bendiciones, para siempre.

To Austin Hospice.

To Lisa Garcia Moncivais for inspiring me to finish this project. Besos!

To all the Caregivers, God bless you all!

All the glory to God!

As I was lying beside her, and she was already very ill, I had my arm at a ninety-degree angle. I would move it back and forth as she tried to catch my hand to squeeze it. It was like playing Keep Away. Finally, I would let her grab my hand then I would say, Just squeeze my hand! You got it! She was happy when she caught my hand and would firmly squeeze it.

Preface

This is a love story that after twenty-six years of marriage continued with a six-year slow death sentence due to the dreaded mental illness, Frontotemporal dementia. Frontotemporal dementia affects approximately fifty thousand to sixty thousand people (Knopman, 2011, cure PSP). Frontotemporal dementia can start in the forties age group and is difficult to properly diagnose.

This story describes the challenges of a caregiver to initially know what the actual diagnosis was because it was a hard disease to diagnose. This story also describes this caregiver’s steps in caring for his wife until her very last breath. The author’s main goal is to help others who may have someone with Frontotemporal Dementia symptoms and who may be dealing with a huge task as a primary caregiver. If you end up being a primary caregiver, understand this, you have a tough road ahead and you will need a lot of support through your journey.

Also, any critical information that can help a caregiver will be highlighted in bold and italics for quick reference.

1

I Just Said You Were Real Pretty

It was a nice, crisp night in September 1968 as I walked with one of my buddies through the busy carnival scene at the yearly South Plains Fair in good ol’ Lubbock, Texas. I saw this young lady, and I mentioned to my buddy, David, "She’s in