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.”

Many Thanks, But We're Not There Yet...

How many times have I heard that phrase from caregivers over and over and over again in the past few years while trying to offer some form of support or help? It’s as if caregivers were born with this instant response in order to deflect any attempt to penetrate into their world where they are desperately wanting assistance but feeling too overwhelmed with what needs to get done as well as an unjustified sense of “GUILT”!  Why is it that caregivers (by definition I mean immediate family members – spouses and children) feel that they do not have PERMISSION to ask for support when caring for their loved one and more importantly, why do caregivers feel that they do not have permission to have a life for themselves?  On average, only 12% of caregivers of dementia patients reach out and seek support.  I was enlightened by this fact last week after having the privilege of attending a class at the University of Ottawa whereby a very talented and passionate student was defending her thesis entitled “Assessing Caregivers Hopes and Expectations for Respite Care”.

Truth be told, my own response when offered help would be, “I’m good, thanks”.  The truth of the matter is that I was NOT good…EVER!  I was MISERABLE!  Like all caregivers who have had ENOUGH, when given the right opportunity in the right setting, I was able to pour my heart out, waiting, hoping, begging for a recommendation/solution that would end my misery but as soon as one would be presented to me…my response would automatically be… “Many thanks, but I’m good”!   I thought that I was alone in my stubbornness but obviously not as I keep meeting fellow caregivers who are adamant about convincing themselves and everyone around them that they are somehow resilient enough to walk their journey alone without any form of support…until they are not…and a crisis occurs that not only has a profound impact on their own health, but will have a ripple effect on all those around them including the ones that they are caring for.

To my fellow caregivers, please STOP saying “we’re not there yet’ and open up yourselves to the support that is available to you.