Reversal of Roles

Last Friday morning, I received a phone call from one of "V"s other caregivers asking if I could come in a bit early... as early as possible.  She had been there for well over forty hours straight, as the Hudson Valley Region (which really is beautiful most of the year) had been hit with yet another crippling snow storm.

Thanks to My Son, Peter, for Finding My Car!

Of course, this was no problem for me.  A welcome any additional time I am able to spend with "V", would had just celebrated her ninety-sixth birthday.

 

Shortly after that phone call, I received a very different call.  The Social Worker at my Dad's Hospice wanted to inform me in advance that a decision had been made to unplug the heart machine that had been keeping my father alive for the past seven years.  He was no longer cognizant, many of his body systems were shutting down, and the heart pump itself was failing.  Once unplugged, the Social Worker compassionately explained, my Dad's heart would stop and he would finally be at peace.

 

"When will the machine be unplugged?" I asked her shakily.

 

"I don't know, Honey, but it will be sometime today," the Social Worker replied kindly.

 

"Will you let me know when it happens?" I asked again, holding back tears.

 

"Absolutely," she promised. 

 

She was true to her word.  Two hours after I arrived at "V"s, I received a phone call informing me that my father's heart pump had been unplugged, and his heart had subsequently stopped beating. 

 

"Your Daddy is at peace now, Honey," the Social Worker told me.  I asked her for the exact time of death, and was informed that it was about five minutes before her call. 

 

The situation felt surreal in a way.  For one thing, I am probably twice the Social Worker's age, and yet she was calling me "Honey."  Secondly, I was sitting in the living room of a  woman, who was almost twice my age, whom I would be providing care for during the next two days.  I would really need to pull myself together.

 

Or maybe not.

 

When I arrived at "V"s, I decided to tell her exactly what was going on with my Dad.  She is a keenly alert and highly aware woman, and I knew she would detect any change in my emotion or behavior.  It seemed like the right thing to include her in information that could cause me to start weeping at any given moment.  If anyone knew about loss, it was "V".  When you live to see ninety-six, it is not at all surprising that you have also experienced much sorrow over the course of those years.

 

"Just so you know," I explained to "V" shortly after the previous caregiver had gone, "I may be making and receiving a bunch of phone calls over the next few days."

 

Without asking why, "V" told me that it was okay.  I believe she had every confidence that I would still do my utmost to provide the best care for her during my shift.  She probably had more faith in my ability than me!

 

I briefly wondered why she hadn't asked why, but the answer became instantly clear.

 

She didn't need to.  She already knew that my father was dying.  I had just taken a week to drive down to Florida and back with my son and nephew so that they could say goodbye to their Grandpa.  I had even sent "V" photos of our journey along the way, which her daytime caregiver shared with her so that she would know we were safe and sound.  In response, I received inspirational texts telling me to "Drive safely" and that "Our thoughts and prayers are with you."

 

You see, "V" and I have become friends.  Real friends.  Perhaps it's simply a function of my role as an at-home caregiver, as you really get to know a person when you spend forty straight hours in their company week after week. 

 

But with "V", it was more than that.  Unlike my relationship with "M", who was in the devastating grips of Dementia, "V" is mentally sharp as a tack.  Sharper, actually!  She can pick up on intonations and body language with the best of them!

 

Plus the nature of our relationship was completely different.  With "M", I took great pleasure in bringing her out to places that would trigger her long-term memory, frequently leading to delightful trips down her unique memory lane. 

 

"V" and I, on the other hand, spent most of our time in her home... sharing meals, movies, and much conversation.  We had established this as the basis for our relationship even before we had become snowbound most of the time!  Companionship.  The main reason, really, that I am there in the first place, even though providing safety and oversight are supposed to be the key components of my role. 

 

In fact, I consider "V" to be one of my closest friends.  We talk to each other about everything, from sharing funny stories about our pasts to much deeper conversation that delve into our feelings and beliefs.  It is a unique relationship.  And very special.  It is the type of bond that perhaps can only be understood by fellow caregivers.

 

So, quite naturally, after I received the phone call that confirmed my father's passing, "V" waited a few moments before gently asking me if I was okay.

 

"Yes.  Thank you," I replied, sniffling into a tissue.  Even though the news had been a long time in the making, it was nevertheless painful to hear.   Death.  No more phone chats.  Or visits, infrequent though they were.  No future opportunities to say to my father, face-to-face, "I'm sorry for..." or "I really do love you in spite of..." or "Thank you for the time that you..."  At least no chance to do so in person.   I've already planned to take the time to have these discussions with my Dad more often, even though his body has been laid to rest.

 

If anyone understood how I was feeling after hanging up the phone (and believe me, I certainly didn't), it was "V".  She, more than anyone I've ever met, knew about loss, grief, and later on, after the pain has subsided, acceptance.  How many treasured friends, family members, co-workers, acquaintances she must have lost over her many years.  

 

"I'm sorry," I snorted a few tissues later.  I found myself feeling guilty for experiencing sadness in front of her, a woman who had just celebrated a birthday which commemorated yet another year of living beyond most of the people who were her peers.

 

"It's okay," she said softly.  "How odd," I thought, then spoke.  "Here we are reversing roles, and I'm the one who is supposed to provide you with support!"

 

I looked over at her for the first time since receiving the news about my Dad.  The expression on her face was remarkable.  Despite all her losses, she looked so calm and content, perhaps knowing that sometime soon (hopefully not too soon!), she would maybe meet my father in a more peaceful place...  Joining her beloved husband, siblings, parents, friends, other extended family members, co-workers, acquaintances, and a long lifetime's worth of people who had touched her life in some way and then departed from this world, leaving behind their essence as a human being.  Their spirits.

 

It was time for "V" to watch the local news on TV, which, not surprisingly, was chock-full of weather related stories.  Roofs collapsing.  Cars colliding.  Traffic not flowing.  Trains delayed.  Flights cancelled.  Homes without heat or water.  People without food or shelter.   And inevitably, a very sad story or two about someone who had tragically lost their life in a snow-related tragedy.  

 

"Maybe these unfortunate folks will meet my Dad," I wondered as I began preparing for dinner.

 

My weekend with "V" turned out to be as wonderful as usual.  We talked a lot about our fathers, and whenever I began to get a little glum, all I had to do was look around "V"s dining room, filled with an extremely colorful and vast array flowers she had received during the week for her birthday.

 

And Valentine's Day!  I had completely forgotten about it until "V" offered me some of her exquisite chocolates. 
 

My Dad had passed away on Valentine's Day.  A day dedicated to love and friendship and telling the people who mean a lot to you that they mean a lot to you!

 

Before I finished my shift, I made sure that I told "V" that she was one of those people.  I thanked her sincerely for sharing Valentine's Day with me, (not that she really had a choice in the matter), and for comforting me as I grieved the loss of my Dad. 

 

"It's okay," she responded with a smile, that same calm and content expression again on her face.

 

"I'll see you next week!" I said definitively as I exited into a blindingly white winter wonderland.

But nothing is certain.  Each moment we live is a blessing, as we never truly know if it will be our last.  That's why it's so important to take comfort in your family and friends, or whoever is in your life at any given time. 

How grateful I am to have "V" in my life at this particular point in time.  And how privileged I feel to know her as not only a person that I provide safety and oversight for, but also as a treasured friend... a relationship that requires no role reversals.

My Dad would have liked her!  And vice versa!  Maybe they will meet one day...

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Note to Readers

I hope this finds you all safe and sound. 

 

Those of you who do NOT live in the Mid-Western, Northeastern, Mid-Atlantic, or Southern regions of the United States, which are presently being pummeled by snow, ice and severe cold, are probably experiencing either torrential rains or devastating droughts.

 

If any of you know of a more pleasant weather condition somewhere in this vast country, please let me know.  Perhaps I could come visit you!

 

I wanted to clarify for you the three blog posts from February 4th, 2014.  These were the ones just prior to my trip to Florida for my final visit with my father, Bill Wilson.  (He has now gone to a more peaceful place, having passed away on Friday, February 14th, 2014 - Valentine's Day.)

 

Let me first thank all of you readers for sticking with my blog so far.  It means a great deal for me to be able to share the stories of my caregiving experiences with others who are interested in hearing about them, and I am sincerely grateful for your loyalty.  I hope that in some way, my tales are bringing a bit of joy to your hearts.

 

Speaking of joy... That is the word that best explains the blog posts from February 4th, 2014.

 

I have been submitting some short articles, so far about caregiving experiences within my own family, to a wonderful on-line publication called The Caregiver's Voice.  The focus of this website is to bring support, compassion, and humor to people who are caring for loved ones who have Dementia related diseases.  The entire essence of The Caregiver's Voice is one of JOY, and so I started sharing some very personal stories with the Editor, Brenda Avadian, that I hoped were both joyful and inspirational.

 

The three blogs represent this hope happily coming to life over the past several months.

 

If you are interested in reading any of the articles, just go to http://www.TheCaregiversVoice.com and click on the topics.  My son, Peter, and I were the focus of a Feature in December, 2013, and I couldn't be more proud of him.  The second two articles fall under the Inspirational topic heading, and are about my Father-in-Law, Ole Juul, currently in the grips of Dementia, and my late Grandmother, Rose Ancillotti, who lived with Parkinson's Disease for many years. 

 

That having been said, I promise to bring you more stories about my time with "V" (most of which have occurred while being snowbound!) following my father's funeral later this week.

 

Again, I thank you all for following my journeys, and wish you peace, love, and JOY... whatever the weather may be!!!

 

 

 

 

 

 

A Long and Winding Road

Every now and then, life throws us a curveball.  An unexpected turn in the road. 

Sometimes, the road is well-worn and long-traveled, the destination often eluding us as we cling to the steering wheel in a desperate effort to dodge the twists and turns. 

Often, the road is straight and steady, and we stay on our path we the utmost diligence, knowing where we are meant to arrive.

And occasionally, the road is short and swift, leading us exactly to where we are supposed to be at the right time.

This last scenario hasn't occurred as frequently as I would have liked during my lifetime, but I am grateful that it happened to me a few weeks ago.

And because of this journey, I apologize to my readers for the interruption in my blogs.

I would like you to meet my father, Mr. William James Wilson, or Bill to pretty much everyone who knows him.

My Dad, Bill Wilson, watching "Tom and Jerry" with his Grandsons

Of course to me, he is Dad, or Daddy, as my Sister and I will always refer to him when we are chatting about him by phone, text, e-mail  or, when we can spare the time, in person.

He is 73 years old, out-living many of the Wilson family members by decades.  Sadly, this includes a Grandfather I never met, who died of a heart-attack in his forties, and Grandma Wilson (as my sister and I referred to her), who sadly suffered a stroke while my family was visiting her Florida home.  She was only fifty-two-years old, two years older than I am now.  I was just a little girl of eight or nine at the time, but old enough to remember the pain it brought to my father. 

Over the many years since then, life in the Wilson family has continued to be quite a ride!  My Mother and Father separated when I was a Senior in High School, and subsequently divorced the following year. 

My Father quickly married again.  His wife, a deeply devoted woman named Nancy, has been with him for thirty-three years, almost twice as long as my Mom and Dad were married!  She has two daughters of her own, and both girls (now women close to my age) grew to love my Father as if he were their own.

My Dad had his first heart attack at the age of forty-nine.  It was a massive coronary requiring at least a quadruple by-pass.  Boy!  Was I worried last year when I was the same age.  I thought that the Wilson curse of early demise would get me, too.

But, miraculously, it didn't strike my Dad, so why should it target me?  I can distinctly recall the doctors predicting a life expectancy of no longer than five years for my Father after that first heart attack.  And here it is almost a quarter of a century later!   Way to show those doctors, Dad!

Seven years ago, my Dad, who had moved down to Florida with Nancy a few years earlier, suffered a second heart attack.  The irony was that he was actually in the hospital already to undergo a different procedure.  Talk about being in the right place at the right time.

The damage was severe, and the cardiology team installed what was then a relatively new marvel of modern medicine, a V.A.D., short for Ventricular Assist Device.  This handy dandy mechanical pump has virtually kept my Father alive since then, which is truly an amazing feat!  As grateful as we Wilsons are to have him around, it has nevertheless been sad to see a once active and vibrant man limited by an extremely heavy and cumbersome battery pack that is constantly attached to a belt around his waist.  Everywhere he goes, he takes a supply of batteries with him.  And at night, when not using the batteries, he must be plugged in.  If not, his heart will stop.  Power failures are NOT an option, and a generator is an absolute essential!

My Father has nevertheless managed to lead a fulfilling life with his V.A.D., continuing to participate in things that he was able to, like visiting his seven grandchildren and attending regular 12 Step Meetings.

Last year, while caring for "M" during the holiday season, I was gifted with the opportunity to spend a day with my Dad.  It just so happened to be his twenty-five year sobriety birthday, and I couldn't have been more proud of him.  Coincidentally (???) carrying the same name as the co-founder of Alcoholics Anonymous, Bill Wilson, my Dad had managed to remain alcohol free despite all of his physical health issues.  We were able to have lunch together, and it was a healing visit for both of us, especially me, who was very much in need of making amends with my Dad for years of distance between us.  I was blessed by the visit, and figured it was the last time I would see my Dad, for he disclosed to me that he now had cancer.  Merkel Cell.  An incurable type of cancer that had established itself in his leg.  He intended to fight the villain with all his might, but the outcome still looked dire.  And thus, my Dad underwent a year of intensive Chemotherapy and Radiation treatment in an attempt to beat yet another deadly disease.  After all, look what he had accomplished with his coronary health!  Beating all the odds!

Three weeks ago, I got the call that my Dad's battle was coming to a close.  The cancer had spread, and even though everyone always thought that the V.A.D. would ultimately wear out and be the cause of his life's end, the doctors were now certain that a shut-down of the kidneys due to the spread of the Merkel Cell Cancer would lead to my Dad's departure from this life.

I was very lucky.  I had a chance to see my Dad last year and come to peace with our relationship. If I've learned only one thing over my years, it's how importance a sense of closure with the past is in order to remain at peace in the present... and to move forward.

Upon getting the call about my Dad's prognosis, I made a quick decision that involved no second guessing.  I knew instantly what road I needed to take. 

And so, I packed up my son, Peter, now sixteen and a half years old, along with my Sister's son, Patrick, who recently turned seventeen, and rented a car (my most affordable option).  They had not seen their Grandfather in several years, and surely deserved a chance to say goodbye. 

We arrived at the Shands Medical Center in Gainesville, FL on Tuesday evening, January 28th, just ahead of Winter Storm Leon that crippled the Southeastern portion of the Country with its snow, ice and cold. 

Amazingly, a good piece of timing on my part.

The following morning, my Dad was transported to Tuscany House, a Hospice located right in the community he and Nancy reside in.  Patrick and Peter helped pack up his belongings, the most important of which was the V.A.D., and we arrived at the hospice shortly after my Dad did.

What a wonderful visit!  Although it was only a few days in length, it was a case of perfect timing.  For once, the road of my life thus far filled with far too many unexpected twists and turns, had led me to exactly the right place at the right time. 

The boys, who had grown quite significantly since the last time my Dad had seen them, could not have been more helpful in getting my Dad settled in his room at the Hospice.  They handled the situation with a level of maturity and compassion that, I must admit, surprised me.  Who were these two strangers that looked and sounded like my son and nephew?  I couldn't have been more proud of the two of them!  Their Grandfather, now in his final stages, looked nothing like the man they had last seen, but this did not phase them in the least.  The three of them sat down at the kitchen table for drinks, got to know the the Hospice staff, and acted as if the situation had been this way for years!

As for me, I had been down this road on my own only a year ago, when I was able to have lunch with my Dad during my stay with "M". 

I never thought I would have a second chance to travel the same path, and was immensely grateful for a another opportunity to spend some quality time with my Dad.  Our relationship over the past three decades, at best, had always been strained, and while I was growing up, it was often oppositional.  If course, my Father's battle with the bottle played a huge factor, as he was not a happy drinker by any means.  But my own part in our distance had become quite clear to me over the years, as I had deliberately shut him out of my own life.  Second chances are few and far between, if at all, so I relished every moment I could during this goodbye journey.

My Dad has declined significantly since entering Tuscany House two weeks ago.  The boys and I are back in the bitter cold and snowy Northeast, and my Dad is safe and very well-cared for at the Hospice.

It is a very beautiful and serene setting.  A warm (usually), sunny (typically) place to come to rest.

I continue to call the staff daily for an update on my Dad's condition, but he is no longer able to speak on the phone.

Most of the time, I am told that he is sleeping peacefully, after having been sedated due to agitation and confusion.  It is painful to hear this, but necessary.  I want to know exactly what is going on with my Father's condition. 

How different from all those years of separation and resentment.  And how lucky I am to realize the change.

Life is too short to be filled with negativity and anger.  I've learned that the hard way, but I least I finally understood the lesson.  We never know when the road is going to end, whether it is long and windy, straight and steady, short and swift, or riddled with unexpected twists and turns. 

I certainly don't know where I am headed next... other than to "V"s this weekend to wish her a VERY HAPPY 96th BIRTHDAY!!!

And afterwards, I hope to return to my regular blogging routine. 

A very special thank you, all of my readers, for allowing me to share an important part of my personal journey with you.  The road that will, hopefully, soon lead to peace for my Dad, William (Bill) James Wilson. 

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