Remnants of the Shock Factor

On a beautiful Sunday evening this July, as I sat on the rocks in Maine while on holiday, a very good friend of mine put her hand on my shoulder, then took my hand and said, “Claire, let it go. It’s time to let it go. It’s time for you to stop being so hard on yourself”…  I was dumbfounded.  How could she tell what I had been feeling inside? I realized at that moment that the toxic feelings that I had been holding onto and only allowing my family to see were now making their way into my outside world as well.  For the past year, my husband had also been pleading with me to “let it go” and give myself permission to love, feel, be happy and “just be”.  Up until recently, I did not understand at all what he or others close to me, including a very important mentor in my life, were trying to say…until now.

I call it… REMNANTS of the SHOCK FACTOR:

•       When an individual suddenly becomes a caregiver without advance warning and their life changes “overnight”.

•       A cycle of anger, grief and mourning for the interruption of their and their loved one’s life.

•       Having to adapt to the constant stress of receiving the “phone call” and not knowing what to expect.

•       Having multiple “expect the unexpected” situations thrown at you constantly involving children, parents, in-laws, health, friends, work and home all at the same time and having to respond quickly.

Despite the fact that my 10  year role as a Caregiver to my mother ended on May 6, 2016, when she succumbed to Alzheimer’s disease, I had been so accustomed to constantly living in a state of “prepare for the worst”.  Every time my phone rang and I saw either the dreaded number from my mother’s long term care facility, the children’s school, or “unknown caller”, my body would go into a state of absolute rigidity, my heart pounding through my chest and the cold sweat beginning behind my neck.  A therapist that I had been working with compared this to being a soldier at war – not knowing when the enemy may attack.

The challenge of being in this state of mind over such a long period of time, 10 years in my case, is that it becomes a way of life, a habit that is hard to break. I recognized that I often felt “uptight” inside, but never fully appreciated the ripple effect that my state of being would have on my loved ones and my inability to truly enjoy all that they and life has to offer, including appreciating the beauty of that magical evening in Maine. 

As caregivers, life puts us through such a rigorous training program.  We become experts in responding to a multitude of situations, crisis, both physically and mentally and we all have our own coping mechanisms.  We rarely give ourselves permission to “just be” and enjoy our own lives as we are constantly distracted by our “care” responsibilities and responding to “what’s next”. During my caregiving years, I had pushed myself so hard to become a Superwoman who could respond to anything that I suffered the consequences by having a nervous breakdown in 2011.

Over the past few years, I have acquired numerous skills through therapy and workshops to overcome the “Superwoman” complex but realize now that the “remnants of the shock factor” became so inherent to me that they were having a significant impact on my relationship with my family, with myself and have been preventing me from living my own life to the fullest.  As my husband and close friend said to me, “Claire, it’s time to let it go”. Life may continue to throw challenges my way but I now recognize that it’s time for me to live, love, enjoy and breathe.

Coping With My Mother's Death…A Year of Personal Transition

It’s 3am and I’m wide awake AGAIN. My head is spinning with thoughts, my heart is racing and I cannot sleep.  Anxiety begins to build up inside of me contemplating the first anniversary of my mother’s death which is fast approaching and the unknown of how I will cope.   I have once again felt the wave of emotions flowing through me these past few weeks which I had managed to harness for a while but can no longer get a grip on.  I feel like a volcano that is waiting to erupt.  The first few days following my mother’s death on May 6, 2016, felt like a huge weight had been lifted off my shoulders.  I had been a caregiver to her since 2006 when she was diagnosed with Alzheimer’s disease, a diagnosis that would come a year after my father’s death in 2005 for which I was still grieving.  A few weeks following her death, I found myself catapulted into a state of anger and resentment towards the disease…emotions that I had worked hard at throughout the years to tame that were once again resurfacing. Random bouts of tears and profound sadness would occur most often while I was alone in my car where I could grieve privately, on my own.

 

I am not the same person that I was a year ago. My mother’s death had a much greater impact on me than I could ever have possibly imagined.  A tremendous shift happened.  What was the shift? I saw myself in her…All that she was, her vibrant, independent, elegant, athletic self and it symbolized how precious life is and how little time we have here.  Everything that I thought I knew about life, about myself dissolved in those hours that I lay in bed with my head against her chest, listening carefully as she took every breath, knowing that it would not be long before it were her last. Watching my beautiful mother succumb to the disease that would not only rob her of her mind, but in the end, of her body as well.  I thought that I would be ready… it had been 10 years. People kept saying, “It will be for the best when she goes”.  I stood witness to her decline in every possible way.  There are just no words that could possibly describe the sadness and sense of loss that I felt upon her death.

 

How have I changed this past year? Depending on how one may see it, I have become much more authentic as a person yet others may view it as “harsh”.  I can no longer pretend at anything anymore. I can no longer tolerate being around anyone whose energy does not serve me. Yet I have also become more loving and passionate towards the people and causes that I care about, making sure to cultivate and nurture the friendships that are meaningful to me and to pay closer attention to expressing my love towards my family, knowing that our time together on this earth is so brief.

 

This year also provided many positive experiences. All of a sudden I was becoming drawn to people and opportunities that were outside of my box.  The friendships that I began to invest in as well as the new individuals that entered into my life all had the same quality – STRENGTH. Strength in character, strength in physical appearance, and strength in dealing with challenges.  After spending so many years of caring so intensely for another human being, I find comfort in being surrounded and supported by these friends and their STRENGTH…

 

How else did I change?  I began to develop a sense of urgency to understand my own purpose in this world.  Waking up every day for months feeling like “life was a destination” as opposed to living in the now and enjoying the journey. I felt the constant need to accomplish, accomplish and accomplish as if I had been given only a few months left to live.  Thankfully, I have acquired the necessary tools over the years to press the “RESET/ABORT” button and have been working hard to get back on track in order to allow myself to “live in the now”.

 

What I know for sure is that I am not the same person that I was a year ago. And that’s OK…Over the past many years, I have acquired a tremendous amount of hands on experience in the field of “Expect the Unexpected”.  As much as I thought that I would be prepared for my mother’s death, I was not.  Yet, there has never been a year where I have learned so much about myself as a human being and for that I am extremely grateful.  Most importantly, I recognize that for however long I have left on this Earth, my love and memories of my beautiful mother will never die.

Navigating the Journey of Alzheimer’s Disease as a Caregiver – The importance of Education and Support

Never before has there been so much attention focused on Alzheimers disease, including the unfortunate reality of early onset, afflicting people who are 55 and over.  According to Alzheimer Society of Canada, there are currently 564,000 Canadians who are currently living with dementia and 25,000 new cases being diagnosed every year.   A tremendous amount of attention has also been placed on the roles and responsibilities of the caregivers and the challenges that they face while caring for a loved one. The reality is that the disease has been around for a very long time, yet the stigma that is still attached to speaking about it prevents many families and caregivers from seeking the necessary help and support they need.

 

As compared to other diagnosed diseases, the family is rarely presented with a “prescription of care” or “road map” of how to navigate the challenges that are associated with managing and living with this disease. The medical community does not automatically educate individuals and refer them to the available support services.

As a Professional Alzheimer Care Consultant and former caregiver to my mother for over 10 years who recently passed away this year from the disease, I have met and continue to meet numerous individuals in my position who have lived similar journeys and the common thread among all of us is that we wish that there could have been someone helping us make a plan in terms of obtaining the type of support that we need and point us in the direction of where to obtain it.  

 

Alzheimer’s disease threw a curve ball into my life when my mother was diagnosed in September of 2006 at the age of 74. My father had recently passed away, I was 38 years old, my 3 children were very young and I was working full-time. I am an only child and the weight of the responsibilities and decision making regarding my mother fell 100% onto my shoulders. There was no “prescription” that was given to me as to how, where, when, who could assist me in managing this disease.  I was completely unfamiliar with any of the symptoms, expectations, challenges that she, and inevitably I, would face in caring for her.  I became caught up in a cyclone of caring for my mother that would last for the next 5 years until I suffered a severe nervous breakdown in July of 2011. I had placed unrealistic expectations upon myself and thought I could do it all without any help from anyone.  The truth is, I desperately wanted and needed help but I was too stubborn to ask for it and second of all, I did not know where to turn to get it. 

My personal experience with Alzheimer’s Disease has taught me that seeking support and becoming educated about the disease from the very beginning would have had a profoundly greater impact on the quality of care that my mother received as well as the level of stress that I endured as a caregiver.

 

Alzheimer’s disease and related disorders have no cure yet – and as the population ages and more people are diagnosed, we need to ensure that the public become better educated about how to deal with dementia. One of my main objectives in founding my consulting firm, Caregiver Crosswalk, is that I can help families navigate this journey and help them connect with the many important resources that are available in the community.

The Final Goodbye

This is the first blog that I have been able to write since my mother passed away on May 6, 2016, succumbing to the final stages of Alzheimer’s disease. I woke up at 3:30am this morning, words spinning in my brain, so I decided to get out of bed and bake cookies for a fundraiser that I have been organizing all week.  What makes this situation odd is that in general, I do not bake. The cookies are in the oven and I’m at the kitchen table allowing myself to let the words flow.

Perhaps I was naïve, but as much as I thought that I would be prepared for my mother’s death, I certainly was not.   After years of witnessing both the cognitive and physical decline that the disease would bring, everyone, including myself, would say, “she’ll be in a better place once the day comes”.  Well the day came and I was not ready to let her go. 

I had been down this road before, accompanying my father on his final journey in 2005 when he died of congestive heart failure.  But that was different.  My father had suffered from a multitude of illnesses throughout my entire life and my mother had been his caregiver.  We had both witnessed his suffering throughout so many years and he kept wishing for his day to come.  And when it did, despite the tremendous sadness, there was peace. 

Sitting beside my mother’s bedside, holding her hands, resting my head on her chest, and stroking her hair.  Watching and counting every final raspy breath, witnessing the gasps of air, wondering when it would be her last.  I have never ever experienced such profound grief in my life.  I felt like a volcano about to erupt and so it did a couple of weeks following her funeral.  I found myself consumed with anger towards the disease that had robbed her of her golden years.  Despite her many years as a caregiver to my dad, my mother was a very healthy and vibrant woman, both physically and mentally…until Alzheimer’s disease.  It took a few weeks for me to once again return to a place of acceptance and let go of my pain.

I was also not prepared for the personal “shift” that would take place inside of me. I had often heard from other women about how a mother’s death “can change you”, but never understood the feeling until now.  I can only describe it as a sense of returning to my roots in order to understand my true purpose in life and continue surrounding myself with positive people and commitments.  I have also become extremely intolerant to nonsense.   The clock is ticking and life is going by way too fast.  

Despite the grief, it has been quite a surreal privilege for me to personally accompany both of my parents on their final journey. The look of death does not haunt me, only the final goodbye. 

Expect the Unexpected…And Then Some

I woke up this morning looking forward to attending a very good friend’s birthday dinner that was taking place this evening in addition to popping into a fundraising event benefitting youth at risk.  Instead, I’m lying in bed after arriving at the ER by ambulance, having every part of my heart analyzed, and being diagnosed with pericarditis, which is an inflammation of the lining of the heart.  The symptoms are quite similar to a heart attack in that a sharp pain comes on very suddenly which can leave you quite breathless and fearing for your life until properly diagnosed. The good news is that I will be fine with rest and meds, but it was a very unpleasant experience to withstand.

As I lay in the ER waiting to go from test to test, I recalled how many times over the past 15 years I had to expect the unexpected, especially during my most challenging “caregiving years” of looking after my mother who was diagnosed with Alzheimer’s disease.  Outside of my role as a caregiver, there was a whole other universe going on involving my children, my husband and his family, our dogs, our business and his/my own health that made sure we were paying attention. I have come to learn that as soon as one challenge becomes resolved, there will always be another one waiting around the corner to surprise us with.  These situations and even serious traumas used to cause me tremendous anger, frustration and grief as I just could not understand why “stuff” kept happening.  After many years of being put to the test, I have come to understand that as difficult as they are to cope with, they often times have a lesson embedded into them…albeit not easy to deal with but a lesson nonetheless.

As caregivers, we resent “unexpected surprises” of this kind yet it is life’s way of reminding us that we are vulnerable as human beings. We commit a lot of our energy towards others and ignore the signals that our body is telling us because we just don’t have the time to deal with it…until of course a crisis in some form hits that shakes us to our core so that we pay attention.  I am no stranger to the ER and have had multiple visits there over the past many years.  Although I am no longer as entrenched in the same amount of caregiving as I have been in the past, old habits are hard to break.  I sometimes place too many expectations on myself until life has a way of showing up and says, “Claire, slow down and pay attention”…Well rest assured, after today’s adventure, “I’m paying attention…for now.”