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 Alzheimers, 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 isnt Magic: Its An Art
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 Margarets 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 Margarets memorial service. I selected a date and planned for arrangements at
the Lutheran Church in Novato. On the pastors 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 dont 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. Its 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 Margarets death I honestly didnt
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 Im not ashamed that I found someone after I lost Margaret. Just
because I have found love with another person, doesnt mean that I stopped loving
Margaret or that our life together loses something. To be honest, if I hadnt been so happy
with Margaret, I dont 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 didnt know how I was going to get through it. Now as I look back, I realize that
its 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 dont 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 its after such a heart break
is never easy, but time does heal all wounds. We think happiness is an option when really
its 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 isnt 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 persons death even that much
more painful. Its a good idea, if you can, to make sure to feel your emotions, but dont let
them consume you.
Dont 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.
Dont 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 Bs
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 ones 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 caregivers 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. Its
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 youre like most family caregivers, you might feel youre not ready, theres 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 clichd 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 havent been a primary caretaker before, youll find out that its a full time job. Dont
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 youre not
physically there.
Also, you are not alone. There are many caregivers who live more than an hours travel
away. And its normal to feel anxiety and pressure when youre not close to your loved one
to be there whenever the need arises.
The good news is that you dont 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 theyre 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 wont 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.
Get Engaged
I dont mean engaged to be married; I mean engaged to LIVE your life to its fullest. Thats
what we are here to do, so lets do it.
Being a caregiver can be work, even for the most loving and patient of people. Even though
its something we decide to do for a loved one because we want to, its 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 dont 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.
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:
March Madness
and Caregiving
March Madness is all about basketball. College basketball, to be exact. Its 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.
Thats what we caregivers want to experience, too. While what we do isnt 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 caregivers world is like March Madness. Here is a summary:
Nobodys 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.
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 wasnt 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.
I had an interview on Sonoma State Universitys 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:
Dont let it consume yougrief, 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.
Its okay to laugh. I remember times with my wife that brought tears of joy and
laughter. Dont 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 its 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 thats what will keep you moving.
Living Through
the 11th Hour
When you hear the word cancer, you hold your breath. When its 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 physicians 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.