When Caregiving Becomes a Death Vigil

When Caregiving Becomes a Death Vigil

When Caregiving-1You’ve journeyed through caring for a loved one for years, months or weeks but the time creeps ever closer and you no longer can ignore the one fact that you have been fighting, the one fact you’ve been denying….the person you are caring for is going to die.

You’ve just turned a page that you never wanted to turn.  What now?

Tuesday, May 10 at 3 PM EST, I am offering a free webinar that introduces us to what to expect as you prepare to hold a death vigil.

Some of the answers to your questions may just surprise you!

Follow the link below to register for this live event.  If you can’t make the call in person, a replay will be available to listen to at a later time.  Stay with us to the end as there will be a special offer for you.  See you then!

Webinar: An Introduction to Death Vigils

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Serving the needs of Caregivers

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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When one book  became two

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 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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