Serving the needs of Caregivers

caregiver image

As a busy professional, I approached the changes in my parents’ health and natural aging process with a cautious eye and perhaps overly positive mindset. When it became obvious that my Father’s mental decline was accelerating (he had not yet received any formal neurological diagnosis), I ramped up my approach and became more assertive, engaging the assistance of my brother who lives far enough away that he visits infrequently.  Together we visited some Senior Living Facilities and approached my parents with our concerns and what we viewed as appropriate options.  We were fortunate to have our parents settled into an independent cottage on a campus that offered a complete continuum of care before my Father’s medical needs became more than my Mother could manage in addition to his then diagnosed Vascular Dementia and Alzheimer’s.  

Everything began to change around me except for the demands of career.  Multi-tasking took on a whole new meaning during the next few years.  I made several changes in jobs to be more accessible “just in case”.  I had traveled a great deal initially, and it became increasingly stressful to be out-of-pocket when emergencies happened.  I will say that no matter what I was doing during that time period, it just never felt like enough.  Once Dad’s condition required him to enter a Memory Impaired Unit, my Mother continued to spend the greater part of every day by his side.  I wanted to be there for him, but I also wanted to be there for my Mom.  I watched her begin to fade away as time passed.  There were several medical emergencies for her during this time, and there were moments when I wasn’t sure if she would leave us before Dad.  During the last two weeks of my Father’s time here, Mom experienced a cardiac event and landed in an ICU about 45 minutes away from Dad.  Being the only child in the area, I never knew whose bed I should be beside!  No matter where I was, I felt I may just be in the wrong place.  Even now, almost three years later, my heart rate accelerates just writing about it.  To say this was an overwhelmingly stressful period, is an understatement.  Fortunately, most caregiving is not this dramatic.  However, there are pockets of dramatic events that can knock us off our center and it can take a long time to regain our footing when we are already depleted from the ongoing stresses of caregiving.

In my end of life consulting business, my focus has been on supporting the dying.  One of the components of being of service is to be able to empty yourself out and be a conduit for whatever is needed for the person you are serving.  I’ve found that this exercise goes beyond active engagement with a particular person and in doing so, have come realize that there is another whole segment of society that is in need of support and service.  

The role of caregiver is one that can be the most difficult work you will ever encounter.  For many of us, it is brand new territory not unlike taking on the role of parenting.  We fuddled our way through those early days with our babies and many times felt like we were doing everything wrong.  Most of the time we begin the role of caregiver to a spouse or parent slowly and in stages, but there are times when there is a health or accidental emergency that can turn our world on its ear in an instant.  

Wouldn’t a handbook be grand, or a roadmap to guide us through the forest of adjustment?  With more and more requests coming my way for information about caring for our loved ones, I decided it was time to share some of the knowledge I’ve accumulated along the way.  

As I once again fill the role of caregiver now that we have brought my Mother to live with us, I’m learning and re-learning some valuable lessons that I’d love to share.  And, I’m sure there will be some humbling moments that you may glean some humor or encouragement from as well.  

In upcoming posts, I will begin to share ideas when you are still in the “about to be a caregiver” stage.  You may be seeing significant changes in one or both of your parents that are pointing the way to changes that may need to be enacted soon.  This is the time to begin to prepare.  Actually, the SOONER you begin the better.  In retrospect, we began the process with my parents almost exactly a year too late.  Thank God we started when we did!  

If I had a wish for you, it would be to give yourself the gift of taking the time to gather facts well before you need them.  Go to the office supply store and buy a 2″ notebook and a couple of sets of page dividers and get organized at the start.  Spend some quality time with your parents and take objective stock of what you see.  Begin to ask them questions and get to know some facets of their lives that you probably have been avoiding.  If you do things slowly, just a bit at a time your Mom and Dad won’t feel like you are descending on them and trying to shake their lives up.  Be loving, be gentle, be respectful, but by all means, be present.  Of this I know for sure, getting started early will serve you all well.  

In my next posts we will start to look at ways to prepare as an expectant caregiver.  I’ll give you some guidelines of who you want to speak with and what information you want to start saving.

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David Bowie’s final gift

 

While processing the passing of David Bowie,  I’ve been struck by the terms being used across media posts and broadcasts.  The choices being made to address David Bowie’s journey have been disquieting.  We are missing his final gift when we use or repeat the terms being used by the media to address his departure from life.

I have read about Bowe’s “18 month battle with cancer”, and how he was “killed” by cancer.  These methods of description further illustrate how detached we have become as a society from the natural path of death.  Death is an unavoidable part of our journey on this earth just as our births were.  If you literally look at how the media describes his experience, you would have to conclude that David Bowie was a loser.  Isn’t that correct?  After all, he “lost” his “battle”.  We frame many things currently in just this fashion.  Think of the “war on terror” or the “war on drugs”.  There must always be a winner, and therefore always a loser.  Clearly then, we are all setting ourselves up to be “losers” as we will all die.

Describing Mr. Bowie in this manner is completely in opposition to how he himself viewed the death process, and how he desired to leave us viewing the death process.  His last gift to us, recorded only last week is a musical and visual testament to just that.

The depth of the artistry by which David Bowie lived his entire life has enriched all of us that have been alive during the time that Mr. Bowie was on this earth.  David Bowie, pushed the envelope,  played with our embedded  pre-conceptions and gave us songs that are beautiful beyond description.  There truly has never been anyone quite like him in the music industry.

Clearly David Bowie did not see his final journey as a battle….he shows us through his final song that he viewed his journey as another opportunity to uplift through beauty and art.  He gave us a gift through his dying, giving meaning and a soundness to how he viewed the way he chose to live his life.

As we all grieve his death, we will enrich his legacy and our own death process by not thinking in terms of winning or losing a battle with a disease, but about the strength of character and unique vision of a man who made his death into an artistic display to enrich outside of himself.  I will remember a man who never apologized for his unique way of viewing the world, and his place in it.  I’ll embrace how he communicated his quirky views, his clear voice and strange though beautiful creations.

It has been my experience that when we embrace our eventual death, we truly begin to live each day with greater liberation and self expression.  We can start by re-framing how we view the final journey of David Bowie.
Thank you sir for a live well lived.

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When one book became two

write a book

Plans…..who needs them?

As a former professional chef, and event manager I really do understand the importance of a good plan.  I am the consummate list maker and get giddy at the sight of items crossed off a list.  I approach parties with plans of dishes to create, recipes printed, timelines posted.  My week starts out with a general M-F list, getting more specific after comparing my appointment list with my Mother’s schedule, who isn’t driving her car these days. (Must work on that!)

But life….life has a way of taking a plan and messing with it.  When I learned to let go a little and let the big things in life unfold before me, I released a lot of anxiety.  The list maker in me still quietly takes back the wheel from time to time and then things get interesting.  The importance of plans never becomes any less important, but the willingness to accept when  a plan needs to be altered is the big lesson.

As a death midwife I have become more and more impacted by just how death negative we are as a society.  We will avoid the subject at any cost, and we will avoid planning for it at the peril of those who love us.  I looked around the internet and through book stores for not only end of life planning manuals, but manuals that would address all the big life altering decisions.  I was really surprised that I didn’t find anything that encompassed everything within one cover, so I decided that I would write my own.  My intention was to use this work book as a tool in my end of life business.  I could use the work book to coach end of life clients and create a comprehensive plan to address all their big-ticket decisions regarding life altering illnesses, injuries and even all their end of life plans.

It’s finished now….all pretty and organized and ready to be used in several different formats.  The strangest thing happened though…once the final touches had been finished, I was not sleeping, I felt like I had constantly had one pot of coffee too many….what was the deal?  One especially frustrating night I could not even get to sleep.  I gave up on trying at 2 am and went down into the family room to pace and ponder.  Suddenly in the wee hours, it dawned on me that the answer had been right in front of me all along.  Apparently I needed to get really exhausted mentally and physically to see it.  The workbook was just the first step….the workbook was a companion to the book I really needed to write.

Out came pen and notebook and I dashed off ideas until dawn.  Before me a book idea took shape and became as real as if I was already holding it in my hand.  

Why don’t we have a more open mind about planning for our end of life when we know that the one sure thing in this world is our exit out of it?  We just don’t relate!  We’ve never died before…we don’t know how to make rational sense of it.  Once we’ve lost someone close to us, our perception begins to shift.  Once we’ve lost a child, parent or partner, our perception literally takes a quantum leap into a new awareness.  When we are the one who is affected by the lack of planning, it becomes real and it becomes real very quickly. 

I decided to compile all those stories and bring together the journeys of survivors.  I started reaching out to friends who have suffered loss and then cast the net a bit wider to acquaintances and I keep going a bit wider and wider.  

The poignancy of the story of a woman whose healthy husband was killed when their girls were still in middle school without even so much as a will just made my heart hurt.  There was a crisis unfolding in the emergency room with decisions to be made with no time to waste.  What would he want?  What life saving measures would he want taken when it was already clear that he would never fully recover?  When he succumbed to his injuries there were decisions to be made and no time to waste.  What would he want?  Should she donate his body?  Should she donate his organs?  What would he want?  Why had he never even checked the box on his license for organ donation after they had talked about it?  Well, she thought they had talked about it, but she suddenly couldn’t remember for sure.  Should she bring the girls in to say goodbye?  His injuries couldn’t be hidden…what would he want?  Ma’am what funeral home would you like us to call?  What would he want?  Ma’am what would you like us to do with your husband’s body?  Have you thought about burial or cremation?  What would he want?  Ma’am how will you be paying us for our services?  Did your husband have life insurance?  The weight was crushing her and all she wanted to do was go back to that morning at the breakfast table when they were squabbling about who was going to pick the girls up after school.

When you’ve just lost the love of your life the burden of just breathing can be almost too much to manage.  Why when you are more vulnerable and broken than you have ever been should you be asked to make all these tough decisions?   And that’s why we all need a plan.  That’s why we need to practice love in action and push ourselves to record exactly what we want before there is a crisis.

We learn through story, we grow from walking along with someone else as they tell us what they experienced firsthand.  We have our “Aha” moments when we feel the utter abandonment a person felt when they realized that everything was now on their shoulders.  Life was never going to be normal again.  Someone has to get up and make the arrangements. That someone is the spouse, partner, child, or parent.  That someone could be you.  Will you know what to do?  Will you know how to honor your loved one?

We are an aging society.  We can’t avoid our future, and we can’t escape our ending.  What we can do is plan for it.  What we can do is record all our wishes.  What we can do is ease the burden of the one left behind just a little bit by emptying their hands of some of the crushing decisions.

That’s what my book is going to be all about.  Stories that will make us all sit up and take notice.  Stories that will sweep us away with tears and some that will uplift us with hope.  Now I realize that the workbook was mean to be a companion to the book I am now researching.

I end this post with asking a favor of you.  Do you have a story to tell?  Do you know ANYONE with a story to tell?  I am currently interviewing all kinds of survivors.  I am continuing to look for people who have had spouses and partners die unexpectedly.  A plan may have been in place, or perhaps there was no plan at all.  I’d like to speak to you either way.  I’m also looking for people who had a close loved one, spouse or partner suffer a life altering illness or accident.  Again, if there was a plan in place, or none at all, I’d like to talk.  And finally, if this doesn’t pertain to you, I know for sure that you know someone who it does pertain to.  Please pass this post along to them.  Please share this on twitter.  Please share this on Facebook.  

I am on a mission, and I need your support to make it happen.  I thank you, I honor you and I appreciate your support.  You can reach me at leslie@thevisionarypassage.com.  I am already scheduling interviews and will continue for at least another month.  I hope to hear from so many interested people who I am still interviewing in March!  Many thanks to each on of you….and keep on sharing.

“The human species thinks in metaphors and learns through stories.” –Mary Catherine Bateson

 

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Suzanne O’Brien talks about non medical end of life care

 


 

Suzanne O’Brien speaks beautifully for all of us that give end of life care.  This is well worth the 13 minutes to watch, and I couldn’t wait to get this out there for you all.  

This is for you IF you are terminally ill, this is for you IF you have a loved one with a terminal illness, this is for you IF you know anyone that is going to die someday…… spoiler alert:  this is for YOU.  

Send me an email for more information on how I can help you create your end of life plan, and how I can help you create your own vision for how you would like to die when your time approaches.

Death is inevitable, planning for it is optional.

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In Loving Hands Workshop

in loving hands

I had the honor of attending an all day workshop yesterday at the serene and beautiful Center at Westwoods.  This workshop focused on the art of green, family-led deathcare.

I was looking forward to listening to some wonderful leaders in the family led death-care movement. There are a few people who I found via the internet or personal recommendation early on in my death care training.  I can’t tell you how cool it was to have them all together in the same room for a day!   Heather Massey is a licensed massage therapist and family led death-care educator.  I love the energy and enthusiasm that Heather brings to EVERYTHING and couldn’t wait to listen to her.

Ruth Faas owns Mourning Dove Studio and is one of the first people I started to communicate with when I was still studying to be an End of Life Consultant and knew we’d be moving to Massachusetts.  Ruth sells eco-funeral supplies, but that is only the beginning.  Ruth has a heart open wide and holds loving space for those that are navigating the death journey either personally or as a loved one.  She beautifully weaves art expression into her connection with people and allows a special type of healing to take place.

Last but certainly not least, I had been looking forward to meeting Karen Van Vurren for quite some time.  Karen  is the founder of the educational non-profit magazine Natural Transitions.

To be with these gifted and loving women was a real honor.  We also had a very educational talk by Ashlie Taylor.  Ashlie is the incoming president of the Funeral Consumers Alliance of Eastern Massachusetts and was incredibly helpful to us as she explained some of the new protocols in MA for death certificates.   I was pleased to hear more about Mount Auburn Cemetery from Candace Currie.  As wonderful as it was to learn more about their green options, I was thrilled to know that there are other cemeteries throughout MA that will allow green burials.  For more information about what green burial even is, feel free to drop me an email.

I hope we have many more of these in months and years to come.  I’d love to see more people who just want to take ownership of their own death management and those of their loved ones attend these workshops.

Healing begins when we do something.  Lovingly caring for the body after death aids immensely in beginning the grief process.  Like everything else in life, it should be all about what you are comfortable with, and what will serve you.  You may want to simply bathe and dress your loved one before calling the funeral home or you may want to hold the entire funeral process in your home.  The choices are yours to make and the most vibrant experiences happen when there as been as much pre-planning as possible.  To learn more about options and even the step by step processes, set up a complementary meeting to get started.  I look forward to hearing from you!

 

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Comfort All Around Us

 

cardinal-red-bird

I love this guy.  Cardinals have held a special place in my heart since I was just a young girl living in Ohio.

We had moved back to the Midwest from Maine and it really wasn’t a happy time for me.

I longed for the ocean, seaside forests, fog and beach combing.  My most beloved moments were climbing the rocks, searching for ocean life and beach glass.  I loved Maine more than I could articulate even as a youngster, it was literally woven into my soul’s fabric.  Having to leave what felt like my true home was filled with emotions that seemed bigger than life.  Of course, as children, everything in our little worlds feels HUGE.

It only took a few years to know that it was just a phase of life, and that phase would then eventually become another phase.


 

Our house back in Ohio was a great house for a nature lover.  We had some farm animals, a small orchard, beautiful fields and lots of woods with a creek.  The expansive yard was a true bird haven.  There would be times when I’d count 30 or even more pairs of cardinals in the bushes.


 

The irony was not lost on me that after moving back to Maine a number of years later, it was rare to ever see a cardinal!

During the last few days of my Dad’s life, I checked out of my normal routine (job included) and moved into Dad’s room at the nursing home.  It was a time that I was honored beyond description to be present for.  It was also a time of deep despair and sadness.  Suddenly time was speeding up and as much as I did want my Dad to be done with his suffering,  it was breaking my heart to come ever closer to the final good bye.

Early in the morning hours, just barely after dawn, I had moved off the side of Dad’s bed to a chair by the window to stretch my back and try to coax my spine into some semblance of normal posture.  Just outside his window at the base of a small tree in the courtyard landed a beautiful scarlet male cardinal who looked directly into the window as if to say, “I’m here.  I’m here for you, to bring you comfort and I’m here for your Dad and Mother too.”  I felt time briefly stand still until he finally decided to seek some food in the grass.  He graced us with his presence or a few hours and then flew away.  

I looked for him each morning at dawn and again at dusk, but he did not return.   Then not long after my dear Father left his earthly body, the cardinal flashed brilliant red by the window as he landed under the tree.  There he stayed for quite some time, quietly comforting us as only an animal can do.  


 

There is comfort everywhere.  When you open yourself to nature, to beauty, to our fellow human beings, there is comfort all around us.  We just have to look.


 

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