Lili's Caregiver's Guide

By Lili Udell Fiore

While in her forties, Lili Udell Fiore found herself in a difficult situation. While juggling her career, marriage, and family, she received a call that her beloved aunt, who lived many states away, was not well. Faced with managing her aunt's care from a distance, Lili relied on wisdom from professionals, friends, and family members to do her best. Eventually, Lili found her way, and then was also faced with caring for her aging parents.

In a helpful resource for caregivers seeking trusted guidance, Fiore shares the lessons learned and wisdom gained from missteps along her own journey as a caregiver that also includes knowledge she learned from her father who was an Episcopal Priest and head of Pastoral Care at the local hospital and an early teacher of dying and death in the 1970s. Her guide provides advice on how to hire Caregivers, create healthy boundaries, utilize her sensory care method, approach Loved Ones about advocating on their behalf, provide end-of-life care, and dozens of tracking forms for personal and medical care. There are various forms, for managing caregiving, preparing for your Loved One's death, and managing affairs after death. Included is valuable insight on grief and how to live again once the journey as a caregiver has ended. Lili's Caregiver's Guide shares proven methods to help Caregivers find peace, organization, and a sense of control while creating the best possible life and passing for you the Caregiver and your Loved Ones.

• Language: English
• Publisher: Balboa Press
• Release date: Dec 22, 2023
• ISBN: 9798765246757

Lili Udell Fiore

Lili Udell Fiore is an experienced caregiver who earned a certification as an End-of-Life Doula from the University of Vermont. This is her first book.

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Copyright © 2024 Lili Udell Fiore.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

Any people depicted in stock imagery provided by Getty Images are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Designer: Tanmay Singha

ISBN: 979-8-7652-4676-4 (sc)

ISBN: 979-8-7652-4675-7 (e)

Library of Congress Control Number: 2023920925

Balboa Press rev. date: 12/21/2023

Lili’s Caregiver’s

Guide

Written By

Lili Udell Fiore

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The Beginning

ABOUT THE AUTHOR

ACKNOWLEDGEMENTS

DEDICATION

THE FOUR AGREEMENTS

CAREGIVING GUIDE FOREWORD

AN INVITATION

A WORD OF CAUTION

TABLE OF CONTENTS

About the Author

Lili Udell Fiore

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In her 40s, Lili found herself in a difficult situation that occurs in many people’s lives. She was juggling the day-to-day responsibilities of a household, marriage to a busy husband, raising a daughter and stepsons. She was doing her best to be involved in as many of her kids’ activities as she could fit in along with managing her own career and dealing with aging family members.

Suddenly, she got a call that her beloved Aunt Esther, who lived many states away, was not well. Faced with managing her Aunt’s care from afar in between in-person visits, Lili spoke to many professionals, friends, and family members on how to manage and handle everything in her Aunt’s life until she got better. Everyone had their own opinion, and many also had their own agendas that had nothing to do with what was best for her Aunt. Eventually, Lili found her way and then was also faced with her aging parents as well.

This book is a sum of all the lessons learned and wisdom gained from the missteps along the way. It also includes a lot of knowledge on death and dying that Lili learned from her father, Rev. Lee Udell, who was one of the early teachers of death and dying in the state of Vermont back in the 1970s. Lili got her certification as an End-of-Life Doula from the program at the University of Vermont to solidify everything she had learned from her experience as a Caregiver and the wisdom from her Dad. Lili wrote this book to be the resource she couldn’t find when her world was imploding. She hopes that it helps you in your journey as a Caregiver, or as someone who wants to know more about caregiving or creating a good death for their Loved Ones.

Acknowledgements

What started as a few short pieces on important information for Caregivers, and how to prepare and create your Loved One’s best possible passing, has turned into a full manual with forms and lots of personal history from my life and some from my friends. I am incredibly grateful to the following people for their love, support, and constructive criticism when I needed it – I am better for it, and I thank you.

My book reviewers – Peggy Barnette, Tamsen Christensen, Billie Delano, Laura Sparrow Hood, and Annemarie Miner – Thank you for the hours you spent pouring over my pages and making notes, sending emails, texts, and calls with needed changes, and how I could make each chapter better and more useful. Without your encouragement, thoughts, and focus, I would not be here. Thank you also to my dear friends who spent hours being extra eyes and doing additional proofing for me! Karen Flately and Molly Diller Zoladz, you helped me perfect my book and I am forever grateful. A huge shout out to my dear friend and neighbor of 17 years, Teresa Reed. Thank you for all of the hours you spent proofing multiple versions of my book and making suggestions on the places it needed reworking. You were right on the money every time and my book is far better for your input!

An enormous thank you to my dear friend from childhood, Tamsen Christensen, who believed in me from the start and cheered me on constantly, as well as being a book reviewer for me. Thanks also to my neighborhood walking buddy, Jan Yager, who was a great sounding board and encouraged me when I needed a pep talk and dog therapy during our walks with her two awesome dogs, Missy and Alvin. I would be remiss if I did not thank Mrs. Sue London, my creative writing teacher who taught me to write way back in high school, and always encouraged me over the years to believe in myself. She is a gem, and anyone who knows her or had her as a teacher at CVU back in the day was truly Blessed.

Thank you to a few other people who also made a difference in helping me believe I could write what has been inside of me along the way. Dr. Martha Twaddle, my beloved brother Nathaniel Udell who continues to be my rock and lived through all of this with me, his brilliant wife Meghan, as well as Peggy Barnette, Kristin Dahlgren, Regina Darmoni, Jessica Derick, Wendy Hughes, Lanie Kanat, Caitlin Reid, Wendy Bachelda Ross, Cindy Roy, Michelle Sawyer, Julie Sloma, Nanci Stokes, and Sheila Tourangeau. Thanks to them and to Patty Kelley, Michael Lauritsen, and Mary Raver for their ideas and suggestions.

Thank you to my wonderful website designer and my editor – Rayna Diane Hennen, who has always understood what I was trying to say, and untangled my words when they were tangled. She also designed and built my beautiful website – muchlovelili.com. I could not have done this without her either!

Thank you so much to Don Miguel Ruiz, who gave me permission to include his Four Agreements in both my book and my Priority Planner. His four simple Agreements transformed my life, and I truly believe they will make a huge difference in my readers’ lives as well.

To Tanmay Singha of Graphixtion.com, who had the creative vision of my book and the preliminary design and layout and took all those Word files and created my book and planner designs! In addition to his wonderful designs, I have to thank Tanmay for his patience with the many revisions, reworks, and all my emails and notes asking for changes and updates. He does everything with a smile and true understanding and team spirit in helping me make my book the best it can possibly be.

Thank you to my mentors – Mari Fitzgerald, Patty Lennon, Tara Meyer-Robson, Ann Simonds, and Chad Welch. Thank you for your advice and counsel over the past few years while I was forming my dream and teaching me to believe that a retired 58-year-old still has a voice that matters, gifts to share, and a meaningful contribution to make in this world.

Thank you to my husband Jim, for his patience while I slowly created my masterpiece and gave me the space to work. Thanks to my kids – Brian and his wife Shannon, Mark, Esther, and her boyfriend Devon. Your love and support for starting my encore business and writing my book means everything to me. Thanks also to Devon’s Mom, Michelle Calvert who helped me with some of the business aspects of getting this published.

I want to give a special thank you to my daughter Esther. You, my Beloved Child, are my hero and who I want to be like when I grow up. You have been the biggest gift in my life since the day you were born. You are brilliant, fierce, kind, and loving. You push me like nobody else to be my best self, encouraging me to constantly learn and grow. You have taught me to not be afraid of anything in life and to keep going forward no matter what is happening. You are incredible, and I am so Blessed to be your Madre and be able to learn so much from you.

Lastly, I am thankful to my parents, Rev. Lee and Mrs. Sue Udell, and my Aunt Esther Porto for giving me the honor of caring for them toward the end of their lives and as they died. What I have learned from you has meant everything to me. Thank you also for showing me how clearly my book is needed to help others as they care for their Beloved Loved Ones. I will love and cherish you all forever and always.

I am eternally grateful to all of you for whatever part you played and I humbly thank you.

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Lili

Dedication

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Rev. C. Leland Udell

I dedicate this book to my Beloved Papa Bear.

"You taught, helped, and comforted so many people over your

lifetime. I am so grateful that so much of your wisdom can now

be passed on to the world. You were always going to write a book

on death and dying, and I pray that everything you taught me

about it has found its way into these pages."

Dedication to God

• As I get ready to submit this creation to my publisher I am realizing that although my work is dedicated to my Beloved Dad, he would be the first person to tell me that the book should be dedicated to God and not to him.

• God is the reason that our Dad had the ability to stand on the front-lines of human suffering as the head of the Spirituality department at the main hospital where we lived.

• It is God that Dad thanked when he witnessed miracles with his patients at the hospital.

• It is God and our Dad’s belief and devotion to him that gave him the grace to accept he was not going to regain his sight.

• It was God that our parents thanked for the miracle of our Mom’s recovery from an incurable blood disease when we were growing up.

• It was God that we thanked when I survived a bad car accident and life threatening allergic reactions when I was younger.

• So it is God that I thank now, for giving me the strength, vision, and fortitude to persevere in writing and finishing this Caregiver’s Guide.

• As our Dad always believed, you do NOT need religion to find God or your connection to Him. He has always been there. It is just us who have to realize this fact and work to know His Love.

• You may find God when you play with your children, cook an incredible meal, hike in the woods, are kind to a stranger for no reason, ski down a mountain in fresh powder or when you speak with a Beloved Family member.

• I have found God in many things and all it has ever required was being still and making the effort every day to be the best I can. Most recently, I can say that I have felt and know God as the words to these pages have poured out of me over the past few years.

• Thank YOU, God, for EVERYTHING. May the Love that poured through me as I wrote these pages keep on going and touch everyone who reads your words.

The Four Agreements

By Don Miquel Ruiz

Dear Friend,

I found The Four Agreements a few years ago and sorely wish I had discovered them earlier. I try to live by Don Ruiz’s Four Agreements and think they will help you too! They have profoundly changed the way I think and have saved me so much heartache and stress. If you have time, please go to his Website and learn more, but meanwhile here is the short version to give you a constant reminder. So, when you are facing a difficult, ugly, or uncomfortable situation, or person, make sure your actions and thoughts are honoring The Four Agreements and you will find you will fare much better.

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The Four Agreements

by Don Miquel Ruiz

1. Be Impeccable with Your Word

2. Don’t Take Anything Personally

3. Don’t Make Assumptions

4. Always Do Your Best

Caregiving Guide Foreword

Hi Dear Caregiver,

This Guide is created to give you the very basics of things you need to know as a Caregiver. Keep in mind that these are created and compiled with love to assist you in your efforts. I personally know how hard it is to juggle everything in your life around the care of your Loved One.

This is not a book that is written for you to read cover to cover (although that’s fine if you choose to read it that way)! I want you to check out the chapters, and then skim down and read the different pieces and forms. See what each chapter has to offer. When something looks relevant, then add a sticky note or bookmark so you can find it again easily. I have included an enormous amount of information and not everything will be relevant. There is also a lot on the different stages of the caregiving journey. Some of the forms only apply when your Loved One is bedridden, is non-verbal, or is leaving this world. So, some may be relevant now, and then it may be years or months until the journey changes and you have reason to revisit. When you are reading the sections, if something does not resonate with you or does not apply to your situation then just pass it by. Consider it your resource for your caregiving journey.

You might see the amount of material I’ve included and think, this is very personal for your Loved Ones. YES, it is! You may also be thinking that their situation is improving, so why ask them questions about death and dying? I get what you are thinking. However, it is vital for you to understand that when someone has been seriously ill, even if they have been given the all clear, and their doctor has told you they are okay and getting better, things can suddenly change for the worse, and you may be caught off guard and unprepared. I don’t want you to miss out on that moment in time when you are still able to ask them directly. If you miss that opportunity, you are left with trying to figure out what your Loved One would have chosen for themselves. Trust me – this is not an easy task and can lead to sleepless nights as I know from experience.

So, my motto is this: Hope and Pray for the BEST. BUT absolutely be sure that you are prepared for the worst. Remember, there is no time limit on their answers! If they can recover from their current illness or injury – YAHOO!! At some point, though, the time will arrive when their health begins to deteriorate. Think about how much easier and more prepared you will be if you go ahead and get their final wishes now. Having their answers ahead of time will give you a direct path to ensuring that all their hopes and choices for the end of their lives are honored as much as possible.

For all the forms in the different packages, I recommend getting a 3-ring binder, and separator tabs. You can create different sections and organize the forms however it works best for you! You will be able to easily direct Caregivers to the information they need to learn about your Loved One and their preferences, and where to make notes in the tracking forms. If a form doesn’t apply, then put it at the end of the binder. With the sheets you do use, make a few extra copies and keep them in the back of the same section. I would get a box of the click pens that have a clip on them – black or blue ink or another color if you prefer. Get out a spool of curling ribbon and cut a few feet. Attach one end to the pen and knot it around the pen and under the clip. Tie the other end to either the top or bottom ring of your binder. This will ensure that there is always a pen with the binder. It also ensures that there are no excuses for data not being recorded because a Caregiver doesn’t have a pen.

You will be amazed at how much easier it is for your medical team and you to objectively get a complete picture of how your Loved One is doing. You will have all the information you need to track their specific situation. I have created numerous tracking forms for mental concerns, physical issues, personal care, and more. Once you start using these tracking forms consistently, you will be able to look back and see when particular areas of concerns began. You will be able to check the binder when your Loved One’s doctor asks you a question to get an accurate answer. This is a much better way to manage a person’s care than trying to reach back in your memory for information on that certain item, which is made even more difficult when there are multiple Caregivers.

There are forms in these packages that are created to keep track of the personal care of your Loved One. Nothing can be overlooked or forgotten. We think we will remember something simple like when our Loved One was last bathed, but we can easily lose track of the number of days between personal care routines. So, the solution is to have everyone use the forms and have fewer things to worry about remembering!

Lastly, with my Sensory Care program, I can help you figure out how to give your Loved One the highest quality of life possible wherever they may be. Together, we can create the kindest and most loving caregiving experience for them and your whole family. If a terminal diagnosis becomes part of your Loved One’s path, we can handle that together, too. Dying can be a scary subject for many people and it can be challenging to talk about it or plan for it.

I promise you, facing the inevitable and creating the best possible situation for your Beloved will indeed make it better for everyone involved, especially your Beloved who is leaving. Learning what their wishes are and honoring those wishes is an act of great courage and love. It will also give you the priceless knowledge that you absolutely have done everything humanly possible to take care of your Loved One.

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Lili

P.S. At the end of the book there is a QR code for you to scan so you can download all the forms and questionnaires for each chapter.

An Invitation

I just wanted to take a moment to explain that I have been Episcopalian my entire life. It is impossible for me to write this book from any vantage point other than Christian because of how deeply it is embedded in me. That being said, I want to make it clear that in no way am I purposely leaving out or disrespecting other religions and their practices and traditions around caregiving, dying, and death. I also have lived in the US. my entire life so I am also unaware of other countries’ practices and traditions for these life events.

So if you are of other traditions or religions please substitute your own practice for things that I mention that are Christian. I mean no disrespect, I just have written what I know to be true for me and my family.

If you feel called and wish to email me what your specific traditions are for your religion I would be very grateful! Eventually, if I receive a number of emails for the other 11 major world religions I want to add a chapter that explains them. I love learning and am grateful for your assistance.

You can email me your traditions and practices at [e-mail]

Thank you!

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Lili

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A Word of Caution

Dear Caregiver,

Before we dive into this caregiving journey, I want to give you one starting word of caution that has been passed onto me by numerous people that I have spoken with over the years. I am hoping that your Loved One or Beloved Child (if they are over 18) has taken care of their legal matters. If you do not know the answer or have been told yes but have never seen the paperwork, now is the time to trust but verify. If they have not yet done their legal paperwork, now is the time to get it done. If they get better, then wonderful! Then they don’t have to worry about it again. If they stay the same or the worst happens, then you will be very happy it is complete.

One of the reasons I feel this is so important is because I have spoken to many families who were told by their medical team not to worry about such things and that there would be time. Sadly, for many of them, there was no better time to get these things executed and figured out. They all had to deal with Probate Court and were locked out of accounts, phones, and computers, so please learn from what happened to them. One family asked me specifically to mention this because of what happened with their adult Beloved Child, who was given a clean bill of health. Just six weeks later, their child was gone because the cancer came back. So, please do NOT ignore their plea or mine.

For all people we love who are unwell, below is the minimum list of what is needed. Please keep in mind that if a person dies without having a legal Will in place, their estate goes to Probate Court, where a Judge will decide on everything or appoint an Executor who will. Probate Court and a Court-appointed Executor will cost money. The funds will come out of the estate instead of going to family or friends, so it is vital to make sure these documents are completed and filed with the state. Please do NOT try to have them write a Will and sign it without an attorney. Most states have specific laws surrounding these documents to protect the wishes of the person who had them created, and therefore, the old days of a simple signed piece of paper no longer exist. If it is not done in accordance with the laws of their home state, the Will may be found invalid and the entire estate will go to Probate Court. Maybe the Probate Judge will honor it, or maybe they won’t. This will add months up to years to the process and countless charges, so please just hire an attorney and get it done.

Mandatory Legal Documents for a Smooth Journey

• Durable Power of Attorney (POA) for Healthcare.

• Durable Power of Attorney for Finances.

• A Will that states who should inherit any special or family items. It should also cover any financial accounts that do not have a listed Beneficiary. It will also state who they wish to be the Executor of their Estate after they die.

• A Living Will, which states how much medical intervention they wish to have done to them before allowing them to die should a situation arise where a choice has to be made.

Other Vital Things to Know & Document

• Double check that all financial accounts and Life Insurance policies have the CORRECT beneficiaries and contingent beneficiaries listed.

• If your Loved One or adult Beloved Child is of sound mind, have them double check that all the beneficiaries, contingent beneficiaries, and Right of Survivorship are correctly listed for financial accounts that are not Transferable On Death.

• Unfortunately, people forget to check their beneficiaries after divorce and remarriage, and the wrong person ends up inheriting the money because it was never changed. There is no legal recourse if this happens, so make sure all the correct people are indeed listed on all accounts.

• Get a list of all account numbers, user IDs, and passwords for all phones, computers, tablets, all financial, memberships, social media accounts, and photo sites so you can still have access and decide what to download or transfer.

• Do they have anything of value hidden around the house in a safe or even a shoebox? Is there a gun in the house? Find out where it is and make sure it has no ammunition in its chamber and is under lock and key with the ammunition safely locked in another part of the house, or better yet, removed from their home and given to the Financial POA.

• Do they have a safety deposit box? Then find out where they keep the two keys.

Take Care of this Business with them WITHOUT DELAY!!!

I won’t pretend like these are easy topics to discuss. It can feel downright awkward. There might be feelings of fear about facing death or even concern that you are trying to take advantage of them. It is likely that they might get ticked off by you. Do it anyway. I don’t say these things to scare you but out of concern for you and your family. Help your Loved One or adult Beloved Child verify what they have. For any document they don’t already have, immediately contact a local attorney to have them put in place.

When a person is not well, they may tell you a lie because they don’t want to disappoint you and do not have the energy to do it themselves. If this is the case, push a little bit as I suggest and offer to do it with them. Stand over their shoulders when they check all the beneficiary information to ensure they are doing it correctly. Under no circumstances should you interfere with their choices. Your job here is to ensure the paperwork is done and only to review the people who are listed and confirm that they are still the correct people. Just like bank accounts and medical information, under NO circumstances are you to say anything to anyone about who is or is not listed on any of these documents. Take the list of passwords and account information and give it to whoever is the Financial POA or the person who they are making their Financial POA and erase the information from your mind as best you can.

If your Loved One or adult Beloved Child has them but you have moved them to a different state from where they were drawn up, take these documents to a local attorney to find out if they are still legally binding in their new home state. Do this as soon as possible!! You do NOT want to take the chance that they are not. If they are not binding, go over the specifics with them, make any needed changes, and have new documents drawn up and signed right away.

The next thing you will need to find out from your Loved One or Beloved Child is their final wishes for their remains. If this is sensitive, start the conversation by bringing up whether you want to be cremated or buried, and where you want your remains buried. Then ask where they want to be and in which form. Just like the legal documents, it’s better to find out now in case they become too sick to tell you later. These are hard questions, but you need to find out what their wishes are for their remains. Here are the basic questions to ask:

1. Do they want to have their remains:

a) Cremated.

b) Embalmed and buried in a coffin.

c) NOT embalmed and buried in a coffin.

2. Where do they want to have their remains?

a) In a cemetery (the only option for burial in a coffin).

b) Ashes buried in a cemetery.

c) Ashes buried in nature someplace.

d) Ashes scattered in a place that is special to them.

3. Also ask them if they have already purchased a plot in a cemetery, recently or years ago.

4. Ask if they have already prepaid for their funeral, and if yes, which funeral home?

5. Have they left instructions on their final wishes with any of the local funeral homes or any funeral homes from previous towns where they have lived?

I have forms that cover all of these details in the Planning Ahead for the Final Chapter section. In that same chapter, there is a two-page list of different options for burial of ashes including space and burial at sea, or in a forest with a tree.

With these items all completed, everything else can flow naturally once these documents and all the answers to the questions have been determined and recorded. Please do not wait. You MUST get these legal documents signed before your Loved One loses the ability to agree / accept and sign their name. Get these things all reviewed and confirmed, or drawn up, signed, and put in place as soon as possible. The truth is none of us know how much time we have left so why take a chance and make things incredibly difficult and complicated when they don’t need to be? Let’s learn from the hard lessons of the families that did not do these things.

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Table of Contents

Chapter 1: Caregiving for Your Loved One

Chapter Introduction

Activities of Daily Living

Baselines for Your Loved One

Bathroom Issues & Incontinence

Being Sunshine & Using Your Imagination to Help Your Loved One

Caregiving Tips

Creating Routines for Your Loved One

Figuring Out Your Loved One’s Love Language

Keeping Your Loved One Comfortable

Medical Issues & Circumstances to Remember

Practical Things to Consider

Caregiving Items to Borrow or Buy

Chapter 2: Hiring & Managing Caregivers

Chapter Introduction

Hiring Caregivers 101

Hired Caregiver Limitations

Caregiving Fillable Calendar

Caregiver Schedule

Caregiver Tracker

Caregiving & Nursing Agencies – TO CONSIDER

Hiring Evaluation Form – Caregiving Agencies

Caregiver & Nursing Agencies – HIRED

Interview Evaluation Form – Caregivers & Nurses

Chapter 3: Lili’s Sensory Care Method

Chapter Introduction

Introduction to Lili’s Sensory Care Method

About Me

Sensory Care Assessment

My Sensory Care — SIGHT Preferences

My Sensory Care — SMELL Preferences

My Sensory Care — SOUND Preferences

My Sensory Care — TASTE Preferences

My Sensory Care — TOUCH Preferences

My Sensory Care — FULFILLMENT Preferences

Activities When Your Loved One is Immobile But Alert

Activities When Your Loved One is Mobile But Confused

Additional Sensory Care Tips!

Top Sensory Items that Spark Joy Comfort For My Loved One

Chapter 4: Taking Care of You

Chapter Introduction

Are You An Empath?

Watch Out for Compassion Fatigue

Creating Routines for You

My Caregiving Triggers Worksheet

Respite Care & Avoiding Burn Out

Social Media & You as a Caregiver

Taking Care of You

The Ticking Time Bomb

Things to Do to Lift Your Mood

My Top Sensory Items that Bring Joy & Comfort

When People Unwittingly Say Hurtful Things

Chapter 5: Core Contact Information

Chapter Introduction

Medical / Personal Care Contacts

Alternative Medicine Support Team

Caregiver & Nursing Agencies − HIRED

Doctor Contact List

Health Insurance Information

Key Planning Legal & Accounting

Medical Supply Stores

Medical Support Team

Personal Care Team

Primary & Local Pharmacy Information

Family & Friends

Family Contact List

Friend Contact List

Religious & Community Groups / Clubs Contact List

Visitor Log

Chapter 6: Medical History & Tracking Forms

Chapter Introduction

Medical Information Worksheets

Allergy Information

Medications & Supplements History Tracker

Dental History

Immunization History Worksheet

List of Implants & Medical Devices

List of Surgeries, Urgent Care / ER Visits, Dates & Complications

Medical Information

Medication Questions for Your Loved One’s Doctor or Pharmacist

Questions for Your Loved One’s Next Doctor Visit – Worksheet

Medical Tracking Forms A-Z

Arm Fistula Flow Movement Tracker

Bathroom Activity Tracker

Catheter Care & Change Tracker

Conversation Tracker

CPAP / VPAP Care & Cleaning Tracker

Current Medications & Supplements Schedule

Dental Device Cleaning Tracker

Eye Drop Medication Tracker

Feeding Tube Care Daily Routine

Fluids Intake Tracker

Food Intake Tracker

General Mobility Tracker

Glucose Level Tracker

Limb Mobility Tracker

Nausea Tracker

Nausea Medication Tracker

Occupational Therapy Exercises Tracker

Orientation Tracker

Ostomy Care Daily Tracker

Pain Tracker

Pain Medication Tracker

Physical / Mental Changes Tracker

Physical Therapy Exercises Tracker

Port / PICC Line Care Tracker

Skin Integrity Check Tracker

Sundowning Tracker

Turning Schedule Tracker

Vital Signs Tracker

Vocabulary & Wrong Word Tracker

Weight Tracker

Chapter 7: Personal Care Worksheets & Trackers

Chapter Introduction

My Background

My Family – Who’s Who

My Friends & Neighbors – Who’s Who

My School, Career & Life Experiences

Personalizing Your Loved One’s Care Worksheets

My Personal Preferences

My Sleeping / Bedtime Routine

Personal Care Tracking Forms A-Z

Adult Brief Changing Tracker

Bedding Change Tracker

Body Care Tracker

Clothing Change Tracker

Food & Beverage Dislike Tracker

Food & Beverage Favorites Tracker

Food Preferences Tracker

Gentlemen’s Grooming Tracker

Hair Care Tracker

Nail Care Tracker

Personal Items Care & Cleaning Tracker

Chapter 8: Information for Traveling

Chapter Introduction

My Critical Information – In Case of Emergency

Allergy Information

Current Medications & Supplements

Urgent Care / ER Visits, Surgeries, & Hospitalizations List

Immunization History Worksheet

List of Implants & Medical Devices (Including Permanent Dental Work)

Medical Information

Chapter 9: Special Caregiving Circumstances

Chapter Introduction

Caregiving for a Beloved Child

Caregiving When Your Loved One is in a Facility or Hospital

Caregiving When Your Loved One Lives Out of State

COVID, Flu, RSV & Vaccinations

Creating a Safe Home Environment

Dementia & Confusion

Low Vision Tips

Mobility & Muscle Issues

Understanding Sundowning Behaviors

Chapter 10: Sticky Subjects & Logistic Tips

Chapter Introduction

A Word of Caution

Almost Everyone is Doing the Best They Can

I am Still An Adult, Thank You!

NEVER Overshare – Your Loved One’s Information

The Uncomfortable Subject of Driving & Doing Errands Alone

Chapter 11: Legal Concerns & Tips

Chapter Introduction

Being a Medical Power of Attorney & Your Loved One’s Advocate

Power of Attorney for Healthcare: Checklist

Being a Financial Power of Attorney

Documents, Paperwork & Items to Locate

Financial & Household Worksheets for Financial POA, & Executor

Power of Attorney for Financial Matters: Vital Information

Power of Attorney for Financial Matters: Checklist

Power of Attorney for Financial Matters: Real Estate

When Your Loved One Dies Without a Will or Legal Documents

Being an Executor

Chapter 12: Staying at Home, Choosing a Nursing

Home, & Moving Your Loved One

Chapter Introduction

Keeping Your Loved One at Home

Keeping Your Loved One at Home for As Long as Possible

Choosing a Nursing Home & Moving Your Loved One

When & How to Start Looking for Communities & Facilities

Facilities & Communities – to Consider

Communities & Facilities – to Visit

Questions for community / Facility Admissions Coordinator

Community & Facility Evaluation Form

Moving Your Loved One from Home to a Facility

Process for Clearing Out & Selling Your Loved One’s Home

Checklist for Clearing Out Your Loved One’s Home

Getting Your Loved One’s Home Ready to Sell

Spreading the Love: How to Go Through, Share & Distribute

Non-Profit Organizations to Consider When Donating Items

New Home List for My Loved One’s Belongings

Request List Forms for My Loved One’s Belongings

Automotive

Books / Media

Clothing / Jewelry

Electronics

Furniture

Garage / Lawn / Plant Supplies

Indoor / Outdoor Potted Plants

Kitchen

Lamps / Clocks

Linens

Rugs

Sewing / Arts & Crafts

Special Family Treasures

Tools

Vases / Knick Knacks

Wall / Framed Art

Chapter 13: Planning Ahead for the Final Chapter

Chapter Introduction

Things to Know & Consider

Ceremonies for During Life & After Death

The Final Chapter

Getting Your Ducks Ready

Hospice & Hospital Chaplains

Keeping Vigil & Caregiving

Thoughts & Questions for Hospice, Visiting Nurses / the Primary Doctor

Things to Remember During the Last Days

When Things Are Getting Really Stressful

Your Loved One’s Death

Worksheets & Things to Know for Your Loved One & Team

Alternative Options for Cremation Remains

End of Life Core Team

Ensuring My Comfort

Life After Death Questions

List of Family & Friends Who Have Died

My Wishes for My Service

Emily Phillips Obituary

How to Write an Obituary

People My Loved One Wants Notified After Their Death

Personal Things I Would Like to Gift

Personal & Unfinished Business

Religion & Spirituality Questions

Things I Want My Loved Ones to Know

Veterans Resources

Chapter 14: Immediately After Death

Chapter Introduction

Things to Know

Immediately After Your Loved One’s Death

Creating a Space to Honor Your Loved One

Suicide Prevention – Know the Risk Factors

When Your Loved One Dies in a Facility

When Your Loved One Dies at Home

Forms & Checklists to Rely on

Friends & Family – Items They are Helping With

Checklist of Things to Consider After Your Loved One Dies

People to Notify After My Loved One’s Death

Final Arrangements Checklist for Service – Family & Friends

Final Arrangements Checklist for Service – Funeral Home

List of Items Dropped Off to Help by Family & Friends

Donations Made in Our Loved One’s Name

List of People Who Could Not Attend the Service

List of Thank You Notes Written & Sent

Chapter 15: Learning How to Live Again

Chapter Introduction

Coping with the Death of a Beloved Child

They Who Shall Not be Named

Losing a Beloved Child & the Terrible Horrible Question

Your Grief Journey as A Caregiver

The Blame Game

Dementia, Debilitating Diseases & Anticipatory Grief

Learning How to Live Again

Grief Resources

Grief Triggers

Hooks in Our Hearts

Life After Isolation

My Grief Triggers / Ways to Feel Close to My Loved One

Watch Out for Leaks

When Out of the Blue

Closing Letter

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CHAPTER 1

Caregiving for Your

Loved One

muchlovelili.com

Chapter Introduction

Dear Caregiver,

I could actually write the entire book just on Caregiving. There is so much in this section on the many different aspects and tips on Caregiving for your Loved One. As I always say, if you have any questions about something going on with your Loved One, please contact their doctor to ensure that nothing is overlooked. If you are not your Loved One’s legal medical advocate (Medical POA), then please contact whoever is their legal advocate. Explain your concerns and ask them to kindly contact your Loved One’s doctor to ask any questions and potentially figure out a game plan in case there be an issue that needs their involvement.

I have also included some things to watch out for medically with your Loved One. It is unlikely that any of these circumstances should arise, BUT if they do, I wanted to give you some basic tools / procedures to follow to help you determine when you need to call your Loved One’s doctor’s office. Please remember, WE ARE NOT MEDICALLY TRAINED!!! If you feel like you are in over your head with something that is escalating with your Loved One medically, please just call 911. If you don’t think it is bad enough for the paramedics, then please call their doctor regardless of the time of day or night. There should always be a doctor who is on call for their medical practice when the office is closed. Please do not feel bad for calling if it is at 3 am – this is their job, and that is what they are paid for…

Whatever you do, please remember to TRUST your instinct or TRUST your gut!!! If you can, call a relative, neighbor, or friend to come over and see what they think. Even if someone tells you it is nothing, if you can’t let it go and your Loved One is mobile, go to a walk-in clinic or get them seen by their doctor or someone in their office, and hopefully, they will figure out what is causing the thing that you have seen or felt that is off.

Please know that I understand how hard it can be some days. I have included every little tidbit of information I have learned over the years from my own life and others’ experiences. I hope that this chapter gives you helpful information that makes your life and the life of your Loved One a little easier. Not everything here applies to everyone, so if it doesn’t apply, just move on to the next thing that resonates.

Later in the Guidebook, I have a whole chapter devoted to Taking Care of You! If at any time you are reading this section or you are having a hard time in real life, jump ahead and read it! Make sure that while you are devoting your life, heart, and energy to caregiving for your Loved One, that you are also taking care of yourself.

Much Love 268412.png

Lili

Activities of Daily Living

You may have been hearing the doctors or Caregivers talking about your Loved One’s abilities and the basic Activities of Daily Living or ADLs. These are the basic things a person must do to take care of themselves to have a reasonable standard of living. When a person is no longer able to do these basic things, they are also no longer able to live alone without the help of someone to assist in the areas they are having issues with or are no longer able to do at all. If your Loved One has any long-term care insurance, it cannot be activated without your Loved One’s doctor officially declaring that they are no longer able to perform at least two of the ADLs.

There is a lot of great information on the Activities of Daily Living in this article from US News.

https://health.usnews.com/senior-care/caregiving/articles/activities-of-daily-

living-for-seniors

The Basic Activities of Daily Living (ADLs)

1. Personal hygiene – bathing / showering, grooming, nail care, and mouth care.

2. Dressing – being able to choose reasonable clothes for the day and be able to physically dress and undress.

3. Eating – the ability to feed oneself.

4. Maintaining continence – being able to mentally and physically use a restroom. This includes the ability to get on and off the toilet and cleaning oneself.

5. Transferring / mobility – being able to stand from a sitting position and get in and out of bed. The ability to walk independently from one location to another.

NOTES:

Baselines for Your Loved One

Sometimes we are Blessed to have Loved Ones who are on top of their health their whole life. Because of this, when we need to become their Caregiver, we know exactly what their issues are and which doctors they need to see on a regular basis.

Unfortunately, this is often not the case when we start being responsible for a Loved One’s care. If your Loved One is like many people and avoids doctors, then you have some work to do. To help you get started, these are the baseline visits to schedule, what to get checked for and what to ask so that additional problems don’t show up out of nowhere.

If they have a