13 Tips for

Caregivers

By J. Dietrich Stroeh

Introduction Throughout our lifetimes most of us will be called upon to help others. This caregiving can be as brief as a few days for someone who is in recovery from an illness or injury or, as in the case of someone who is terminally ill or experiencing conditions such as Alzheimer’s, can require our commitment of care for many years to come. Whether we share the same residency with the one we are taking care of or provide our care from long distances, our efforts are often in addition to those already required of us from our full work/family schedules. When Margaret and I learned of her Stage Four Pancreatic Cancer we did not know we would have only three months together. There was very little time to adjust to the shock AND educate myself about what she would need from me and from others. My learning curve was steep and often managed in what felt like total darkness. Since then I have met many people who share my experience and many who are only just beginning their caregiving journeys. This ebook - 13 Tips for Caregivers - is for them. These 13 blog posts and published articles are intended to offer thoughts, tips, and resources that could not only reduce the angle of your learning curve but also remind you that you are not alone. Best, J. Dietrich Stroeh www.threemonthsbook.com Three Months: A Caregiving Journey from Heartbreak to Healing Three Months: A Caregiving Journey from Heartbreak to Healing Revised Caregiving isn’t Magic: It’s An Art

©2015 by J. Dietrich Stroeh

All rights reserved. Published 2015

13 Tips for Caregivers

A Look Back At Love

Caregiving Changes Your Life

The Four B’s of Caregiving

Dual Caregiving

Long Distance Caregiving

Grief’s Ebb and Flow

Get Engaged

Have a Sense of Humor

Caregiving Tips for Students

March Madness Caregiving

Caregiver Tell Your Story

Caregiving Tips for Students

November Caregiving

Living Through the 11th Hour

A Look Back With Love

Three Months: A Caregiving Journey from Heartbreak to Healing excerpt As I write this, it has been almost six years since I lost my wife Margaret to pancreatic

cancer, and in some ways, it still seems fresh. At the same time, change has been an

important part of the healing process. Until you have gone through the kind of loss that

breaks your heart and tries to break your spirit, you can’t know what gets you through it.

The day she died, I sat with my two business partners on each side of me on a bench in the back yard, John Stuber and Al Cornwell asking “Now what do I do?” over and over again. I was completely stunned and drained. My mind did not work right. I was lost. Yes I functioned, but my world turned black. It was very hard to understand that I would never see or talk to Margaret again. That was one of the most difficult things to grasp. The emptiness and hurt would be with me for months, without much let up. I woke up and slept with it. The only way I could sleep was by taking a sleeping pill and then sometimes that did not work.

When I ask myself how I got through this, I realize that the process began way before I was even vaguely aware of it. I had to try and write Margaret’s obituary. The day after she died I spent much of the day sitting and attempting to put into words her amazing life, and at the end of the day I had failed terribly. However taking the time to write it distracted me from the reality I was facing and helped me to face the loss head on. Fortunately, the will and trusts - the legal end of things - had already been taken care of. So I turned to Margaret’s memorial service. I selected a date and planned for arrangements at the Lutheran Church in Novato. On the pastor’s advice, it was agreed that we would use the church chapel and the adjacent large meeting room to accommodate the large number of people who were expected to attend. I am grateful that I decided on a TV monitor as well. With standing room only, this allowed people outside the church to participate. Then I selected music by musicians she enjoyed: Andrea Boccelli and Sarah Brightman. My daughter Christina wrote a song that was sung by another daughter, Jody. ‘Amazing Grace’ was song by my granddaughter Alex. Sharing the memorial details with others was good for all of us, including good friend and Marin County Supervisor Judy Arnold who did the euology. All of this helped me get back into a frame of mind where what I was actually making things happen.

I started working longer hours at the office. While Margaret was sick, I was working

between 20 and 30 hours a week, but now I was up to 40 hours a week. It was good

because I was busy. Again, my focus was on moving ahead. I don’t think it is healthy to sit

in a dark room by yourself alone with a heavy heart. You need to get out, stay busy, push

yourself just a little past what feels comfortable.

The thing that is true while you cared for your loved one is still true after they are gone, life

keeps rolling along. And while people are even more willing to cut you slack and

sympathize with your loss, the world keeps spinning. You have to be in it. It’s important to

begin talking with people, putting yourself into situations where you will move beyond

your loss a little. In the days and the weeks following Margaret’s death I honestly didn’t

know what I could do and I thought my life was destined to be pretty difficult. But I worked

hard, put myself out there a bit and gradually things seemed to get better. I started going to

functions, getting back into things that had been important to me before Margaret got sick.

A number of months after I started getting back into work, I had dinner with a woman who

regularly attended business related meetings, thinking the companionship was nice. From

that friendship, over time, a romance grew. Today, we are happily married.

I have no regrets and I’m not ashamed that I found someone after I lost Margaret. Just

because I have found love with another person, doesn’t mean that I stopped loving

Margaret or that our life together loses something. To be honest, if I hadn’t been so happy

with Margaret, I don’t think there is any way that I could have become involved with

anyone else.

Losing Margaret was the hardest thing I have ever gone through emotionally, when I was in

the middle of it, trying my best to take care of her on the outside and struggling mightily on

the inside, I didn’t know how I was going to get through it. Now as I look back, I realize that

it’s a long process and maybe the most important thing you can do is put one foot in front

of the other, moving forward one day at a time. I don’t think that means you move away

from your loved one. Rather, it means that your life keeps going and you take their love and

that experience with you. Adapting to change, especially when it’s after such a heart break

is never easy, but time does heal all wounds. We think happiness is an option when really

it’s a choice.

Caregiving Changes Your Life

Becoming a caregiver is not a responsibility that you take on lightly. As those close to you

begin to age, or experience the onset of a terminal illness you want to be there to take care

of them as their health declines. This isn’t a burden, but rather a unique commitment that

comes with its own set of rewards and challenges.

The most difficult aspect for the caregiver is the changes you undergo after your loved one

has passed away. Here are some thoughts that might help:

Managing Emotions - Being a caregiver changes you as a person; it can and often does

play with your emotions in ways that you never thought possible. The boatload of feelings

that you will experience at this time range from sadness to frustration to joy and even

stress. The devotion that you showed your loved can lead to a new bond between you that

is stronger than the one you had before. This can make that person’s death even that much

more painful. It’s a good idea, if you can, to make sure to feel your emotions, but don’t let

them consume you.

Don’t Feel Guilty - Guilt does no one any good and can often leave you feeling worse for

wear. When the person that you have been caring for each and every day passes, it is

normal if you feel a bit of relief. The fact is that you have been on a caregiving journey that

can be exhausting. There are many different stages of grief and everyone handles this

process in their own unique way. It is fine for you to cope in any manner that you see fit as

long as it is healthy both physically and emotionally.

Don’t Let Grief Consume You - Not only will you be grieving the loss of the person that

you once knew, but you will also be coping with your lost role as a caregiver. Allow yourself

time to adapt and adjust. You are now entering into a new phase of your life. From there

you will see how being a caregiver can change you views about life and about the

relationships you have with others.

The Four B’s of Caregiving

Caregivers are dreamers. They look up to the stars in hopes of a miracle and in the midst of

that look for ways to live with an incredible amount of hope and faith.

To help themselves, caregivers seek feedback and advice from other caregivers. I recently

discovered the most heartwarming caregiving guide on The Caregivers’ Living Room from

fellow caregiver, Ozioma Egwuonu. Her mother was diagnosed with cancer and she battled

overwhelming grief.

A caregiver devoted to helping others, she created a guide that demonstrates how to create

resilience and balance in the face of a heartbreaking crisis.

Breathe: Holding your breath can be a knee jerk reaction when surrounded by chaos and

panic. Try to just let go and breathe. It will release endorphins and relax your nervous

system.

Break (Breakthroughs, Breakdowns): Breakthroughs are a moment of realization, an

epiphany that will leave you with a lesson learned. To achieve this valuable insight keep

open to possibilities as these are what lead to solutions.

Breakdowns are when you feel you have lost control. Find ways to safely release your

emotions. Crying and/or sharing them with others can diffuse them and provide great

clarity.

Balance: Allow time and space for both you and your loved one’s needs. Create a priority

list and keep it updated as needs do change.

Believe: Every caregiver is a capable innovator. Challenge yourself to make the

extraordinary happen and push boundaries. In caregiving, you may invent new ways to

take care of your loved one. Along the way you may also discover opportunities to create

new memories together.

Dual Caregiving

Caregiving is a serious responsibility. There are many tasks associated with it, including

personal care, housekeeping, transportation and companionship. Personal care includes

administering medication, and personal hygiene. Housekeeping includes making the bed,

washing the dishes, preparing meals. Transportation involves assistance with getting your

loved one to appointments, companionship is all about being there when needed.

Today, many Baby Boomers are care giving children and parents. This responsibility is

coined as dual caregiving and these caregivers are often referred to as the ‘sandwich

generation’. Efforts to fulfill the caregiver’s role for both the generation before and after

you is double duty.

In all cases, the toughest job is time management. At times, conflicts may arise and

sacrifices may have to be made. Caring for an aging parent and raising a child

simultaneously will present certain challenges because of the different needs involved. It’s

not unusual to feel like you are being pulled in two different directions.

Something to keep in mind with being a dual caregiver: Balance

Balance is important. Attending to the needs of more than one person (not to mention your

own is something that takes time to achieve. Along the way you have to make choices about

which needs are the most important in the moment.

School age children need to be prepared for school (breakfast, homework, school activities,

etc.). Consider enlisting the service of others like homework tutors, if possible. Develop

routines for the older generation so that hygiene and medications are regularly scheduled.

Dual caregiving can push your limits. Push back by expanding your capacity with time

management and the help of others. Along the way be sure to find respite for yourself. That

and moments of easy, simple joy will lighten your mood and remind you that you are

making a difference in the lives of those you love. And, no matter how tiring it can be, you

do it because of love.

Long Distance

Caregiving

Kindness, love & loyalty are a few of the many traits that are necessary when providing

care for a loved one, especially long distance care giving.

If you’re like most family caregivers, you might feel you’re not ready, there’s still too much

for you to learn before you actually start giving care. Yet, you care deeply about your family

members and would do anything to help them –no matter how far away they are. I know, it

sounds like the end to a clichéd retirement commercial: your loved one can no longer

maintain several aspects of his or her life and needs you to step in and aid them.

If you haven’t been a primary caretaker before, you’ll find out that it’s a full time job. Don’t

get discouraged though, there are details that can be taken care of to make the situation

less stressful and allow you to be present for you loved one, even when you’re not

physically there.

Also, you are not alone. There are many caregivers who live more than an hour’s travel

away. And it’s normal to feel anxiety and pressure when you’re not close to your loved one

to be there whenever the need arises.

The good news is that you don’t have to become a nursing expert, a superhero, or a saint in

order to be a good caregiver. With the right help and support, you can be a great caregiver

without having to sacrifice yourself in the process. There are things you can do to better

prepare for care giving emergencies, and ease the burden of responsibility.

Here are 3 tips to help you:

Schedule regular communication with your loved one. A daily email, text

message, or quick phone call can let your relative know that they’re not forgotten and can

give you peace of mind.

Set up an alarm system for your loved one. Because of the distance between

you, you won’t be able to respond in time to a life-threatening emergency, so subscribe to

an electronic alert system. Your loved one can wear the small device and can use it to

summon immediate help.

Manage doctor and medical appointments. Try to schedule all medical

appointments together, at a time when you’ll be in the area. Take time to get to know your

loved one’s doctors and arrange to be kept up-to-date on all medical issues via the phone.

Your relative may need to sign a privacy release to enable their doctors to do this.

Get Engaged

I don’t mean engaged to be married; I mean engaged to LIVE your life to its fullest. That’s

what we are here to do, so let’s do it.

Being a caregiver can be work, even for the most loving and patient of people. Even though

it’s something we decide to do for a loved one because we want to, it’s still a challenge to

take care of ourselves AND others. Sometimes we lose sight of who we and our loved ones

are. We forget what it means to enjoy life.

Over time – and after much research - I have come to the conclusion that, even with a very

full plate (in fact, sometimes in spite of it) we can keep our spirits up for all concerned.

Here are some ideas about how to keep the juices flowing:

Get Creative – Find ways to let yourself shine through art work, folk art, dance,

music and song. I personally love to do wood working. It is very satisfying on many

levels.

Get Physical – We all know the health benefits of movement. Even seated in a chair

or lying down we can do yoga and more. Moving those muscles releases stress and

helps keep the body more agile.

Get Spiritual – Mediation and prayer provides us with ways to connect to

something greater than ourselves. Reduce isolation with the comradery that can be

experienced when you participate in meaningful religious or spiritual traditions.

Get Community – Talk to others, especially those who understand caregiving. You

can help one another.

Get Educated – You don’t already know everything. What do you wish you knew

more about? Online classes and activity centers can offer you the world.

Get Leisure – Have fun in all shapes and sizes. Dominoes, picnics, concerts, sports

are all great opportunities to enjoy what life has to offer.

Now is the time to fill your tank with activities that fuel you. This is what will keep you

going even when times get tough. You still have ‘lots of living to do’.

Have a Sense of Humor

How can you possible laugh when your loved one is suffering? Many times while taking care of my wife Margaret I felt that laughter – in the face of her terminal condition – was inappropriate. I felt that way until she and I both experienced the joy and relief that came when there was laughter in our house. We both found that humor, just like crying, was healing. It allowed us to 'be in the moment' and that helped us to let go of stress and anxiety. This made it possible for us to see our situation differently.

Clinical studies show that humor can increase the heart rate and that can lead to a deeper exhalation of carbon dioxide and intake of oxygenated air. It can lower the levels of immune system suppressing hormones, and, in most cases, can help us feel and look younger.

Still finding it hard to laugh? Good news! Laughter can be cultivated. Here are some techniques that could help:

Look for funny – even silly - cartoons that encourage a smile. Remember that complete control is impossible. Moments of unexpected joy and

laughter create levity that encourages a more-positive environment for all concerned.

Spend some time with a funny person. Happiness is contagious. Memorize a joke or two and share with others - especially loved ones.

To help out here are a few easy-to-remember jokes:

1. It’s scary when you start making the same noises as your coffee maker.

2. A doctor walks into an examination room and sees a man sitting on the table looking pretty sick. “Flu?” he asks. “No, I drove here”, the man says.

Grief's Ebb and Flow

Grief is a strong emotion. For some people it's overwhelming. According to the Mayo Clinic, it occurs “regardless of whether their sadness stems from the loss of a loved one or from a terminal diagnosis they or someone they love has received.” It is an individual and collective experience that caregivers know all too well.

Latest census figures show that about 40 percent of women and almost 15 percent of men 65 and older have lost their spouse to death. In some cases the surviving spouse can live for decades beyond the loss. This provides unprecedented insights into living after a beloved partner has died. Information gathered about this could change our understanding of grief.

The groundbreaking work of Dr. Elizabeth Kubler-Ross M.D. a pioneer in the field of death and near-death studies outlined five stages of grief: denial, anger, bargaining, depression and acceptance has shed light on the grief process. Even so, there are myths about what it is and what it should be like.

For example, some believe that the feelings will go away if you ignore them. Denial is about ignoring the pain but in time that gives way to other feelings. Some studies suggest that the process isn't as linear as first believed. People can move between the phases in a variety of ways. Just like other feelings, they move through us in ways we cannot always predict or prepare for.

For me there were times when I was experiencing several stages at once. I learned that anger and acceptance can go hand in hand. Understanding that made it possible for me to not resist as much what I was feeling. I believe that helped me to find my way more often than not.

Ultimately, it is about coming to terms with loss. Not easy for many, many reasons. But so important if we are to heal.

The rhythm of a caregiver's grief is unique. Finding our way with it and through can be determined by whether or not we were able to come to terms with the loss of a loved one before she or he left and whether or not we had coping skills and supportive resources.

Being at peace as best I could with my grief and by sharing it, when it felt right, with others who understood its power did make a difference. It helped me to eventually rediscover that life was still very much worth living, even without the woman I had loved very much.

March Madness and Caregiving

March Madness is all about basketball. College basketball, to be exact. It’s a 30-day frenzy of game after game until at least a winning team (most stamina + basketball smarts) comes off the court having beaten every opponent they faced. That’s what we caregivers want to experience, too. While what we do isn’t a sport that takes place within a designated time frame with a clear cut victor at the end, we do need to apply skill, discipline, effort and more knowing that victory for us is not as simple. I read a March Madness blog by Carrie Steckl (a.k.a. Dr. Chill) that cleverly summed up the ways a caregiver’s world is like March Madness. Here is a summary: Nobody’s perfect: Expectations have to be reasonable and disappointment has to be handled in order to keep going.

Anything can happen. You never know what will happen and what fast break is headed your way.

Heart can trump ability. Faith in yourself can help when you need more than your skills.

We can start over. Each game, each day is a new chance to be a winner.

Enjoy the ride. The journey is a roller coaster of emotions: some up, some down.

I encourage you to read the entire blog written by Steckl a part-time faculty member at Columbia College of Missouri who writes about faith, wellness, and caregiving.

Link to Steckl’s blog: http://www.chicagonow.com/ask-dr-chill/2014/03/5-things-caregivers-can-learn-from-march-madness/

Caregiver

Tell Your Story

We all know that being able to share our thoughts and experiences with others can help us

keep perspective. It can also help us stay healthier. And, maybe most important of all, it

could be of use to someone else.

I know when I wrote my book, Three Months: A Caregiving Journey from Heartbreak to

Healing I wasn’t planning on writing a book. I was just trying to keep my thoughts straight.

I was also creating lists to remember doctor appointments and suggested resources. In

time these notes took a distinct narrative form and I could see a story evolving about the

shock I was experiencing. Out of the blue- my wife and I learned that she had terminal

Stage Four pancreatic Cancer. We were given six months and she only lived through the

first three.

Time was ticking; with each passing day the window of opportunity for hope was getting

smaller and talking to myself with pen and paper helped to provide comfort.

Since then I have spoken with many caregivers who found comfort and solace in sharing

with others the heartbreak and challenges they faced. In that process they also were able to

aide those who might have been only a few steps behind them in what can feel like a very

dark tunnel with no road map or clues about what happens next.

I encourage others to tell their stories in whatever ways are most appropriate for them. For

me it was writing that over time became a first person tale of the journey I took. For

someone else it might be blog posts, audio or video recordings or (for those who have

visual talents) collages or works of art that link the dots of their caregiving a loved one.

Caregiving Tips for Students

I had an interview on Sonoma State University’s KSUN streaming radio talk show host

about caregiving. Throughout the interview we spoke to Sonoma State University student

listeners about November as National Caregiving Month. We agreed that many students are

learning to be thankful and appreciative of those around them who take care of loved ones.

The host asked many questions about how to cope with losing a loved one and how I was

able to cope with the tragic loss of my wife, Margaret. She had been diagnosed with stage

four-pancreatic cancer and lived only three months beyond the diagnosis. Truth is, this

made me even more appreciative of my life and of those around me.

Here are some thoughts I have for students:

Don’t let it consume you…grief, loss, and sadness are all a part of life. Although the

passing of a loved one can seem unimaginable and unbelievable, it is normal and,

sooner or later, happens to everyone. Staying busy and happy as often as you can is

important.

You never forget you accept. Grief never really goes away; there is always something

or someone to remind you of a loved one now gone. Look for the positive in those

memories.

It’s okay to laugh. I remember times with my wife that brought tears of joy and

laughter. Don’t ever let someone tell you that laughing is wrong or disrespectful; it is

a part of accepting grief. The healing benefits can ease the pain.

Grief is the price we pay for love. The sorrow will also be with us but it’s what we do

with it that matters most.

Throughout this radio interview I could tell how touched the host was; especially when she

shared her acceptance at the passing of her grandfather. Each day it got easier. That hope is

important to remember because that’s what will keep you moving.

November: Caregiving Month

As November: Caregiving Month rolls around we are all made more aware of the effort

family caregivers give to take care of loved ones. They go above and beyond by giving

approximately $450 billion worth of uncompensated care across the globe annually,

according to LiftCaregiving.com.

I was surprised to learn that in the United States alone 29% of the adult population - about

65.7 million people - serve as caregivers. This number reflects those who not only care for

the elderly but also for caregivers responding to disabled or ill people.

Most of them are women and the age range is basically ages 18 to 49.

There is no doubt that caregivers save lives. They also can even the toughest times for their

loved one easier. They give day in and day out, without any regard really for a month set

aside to honor them.

Even so, they should be honored. Here are some ways to do that:

-If you are a caregiver, treat yourself to a new book, a special cup of coffee or

tea and lunch or something that reminds you that you are doing great work.

-Send a card to show your appreciation of these caregivers.

-Attend a local town meeting and promote legislation that businesses will

develop a more family-friendly caregiving policy. Fight for the good caregivers do, and

make sure that these caregiver’s actions are recognized on a local level. Try and make

moves to insure that other caregivers will be held to the same standards.

-If you belong to a group of caregivers, host a get-together to celebrate your hard work.

At one time or other we all rely upon others for assistance. Caregivers, in particular, are often the first line of defense for those who cannot help themselves. Let’s remember to celebrate all they do.

Living Through the 11th Hour

When you hear the word ‘cancer’, you hold your breath. When it’s attached to

the phrase Stage Four Pancreatic, your heart almost stops. At least it did for

me when my wife Margaret received that unexpected diagnosis. We thought

she was having stomach troubles and had no idea whatsoever the true nature

of her physical condition.

We were in shock, both of us, that we wanted to get over as quickly as possible. We had

literally only had half the time the specialists suggested we could have. We had three

months together following that unwanted diagnosis. So we forced ourselves to do the best

we could with no idea of how long we could do that.

She was the one in physical pain. Her ease or its lack were our guiding principles on a daily

basis. I wanted to be her caregiver. Helping one another had long been part of our

relationship and this would be no exception. However, the helping that was needed was

vastly different than anything that had been done before.

I wanted to protect her whenever possible from anything that would increase her suffering.

I made and attended all medical appointments and spent long hours and days waiting for

results, and then managing my own despair and sorrow when the news was not what

either of us wanted to hear. I also had to accept that I could not control the cancer. I could

only control my ability to accept it.

Other priorities took a back seat. The time we had together had top priority. We discussed

her treatments choices and decided to put our bets on quality of time rather than quantity.

I am very glad we did. We could then get on with sharing what time we did have left. We

laughed deeply and cried together during our favorite movies.

In hindsight I see that we made it through what physician’s like to call the “11th hour”. In

our gift of time together we cherished each other and made everlasting memories. Yes,

some were more than bittersweet, but they were ours.

Along the way I had to learn how to cope with the sea of feelings I felt. How could I protect

her and how could I adapt to the never-ending tasks a caregiver takes on?

I did discover some techniques along the way that made the journey easier. They included:

-Journaling: Writing about feelings (hope and fear) can help to release pent up frustrations,

anger, loneliness or sadness.

-Walks: Fresh air and time alone made it possible to process thoughts and feelings I did not

want to share for fear that would only add a negative tone.

The 11th hour has come and gone. Our ability to share, truly share the love that pancreatic

cancer could not diminish gave me the courage and strength I needed to keep living.

About the Author

J. Dietrich Stroeh’s life came apart after learning that his wife had

pancreatic cancer. The Stage Four diagnosis took him on the roller

coaster ride of his life. Overnight, this successful businessman

became a caregiver powerless over the course of his wife’s illness.

He had to face internal weaknesses and external obstacles in

order to take care of her and, when the time came, lovingly let her

go.

Stroeh chronicles his journey in Three Months: A Caregiving

Journey from Heartbreak to Healing. This paperback takes readers inside the Stroeh

household where home care, medical decisions and much needed laughter gave

extraordinary shape to an unexpected and devastating illness.

The book also provides easy to read care-giving tips and useful resources that Stroeh

picked up along the way. Advocating for a loved one, caring for one’s self, being part of the

medical team, and handling grief are only a few of the topics that are addressed simply in

this first-person story.

Building upon the success of the paperback version (ISBN # 978-0-9822888-5-6,) the e-

book release includes a special section of articles about long distance caregiving, resources

for male caregivers and more.

His “Being A Caregiver Isn’t Magic: It’s An Art” e-book is a handbook of six lessons Stroeh

learned along the way, including how to keep a much-needed sense of humor and how get

through the holiday blues.

An engineer by trade, J. Dietrich “Diet” Stroeh has headed up projects great and small, and

managed the Marin Municipal Water District in the midst of one of the worst droughts on

record. That experience was the basis for his first book, The Man Who Made it Rain, co-

written with Michael McCarthy.

For more details, visit www.threemonthsbook.com .