This Moment

Treasuring This Moment in Time 

I describe the day I heard my husband had frontotemporal dementia as my “this moment in time” day.  From this day forward our life would never be, and has not been, the same.  

It’s very easy to see how people would see such news as only a negative, but I came to see an opportunity within the sadness. “From this day forward,” said the doctor, “your life will be different. You can do anything you have done before or have wanted to do, but will do it differently.”  His statement resonated in my ears and in my mind, but even more deeply in my heart. The tornado known as FTD had hit and had carried me to an unknown and frightening land.  As I regained my composure, the paths ahead of me became clearer and I had choices to make as to which road would lead me to becoming the best FTD caregiver I could.

I have come to realize that at the moment of diagnosis, the doctor and family members present know in the deepest sense that moving forward will be profoundly difficult work.  But I also know that there are different types of difficult work and choices to make: how can I work productively to make every moment count.  Like many of us, I am fortunate to have had some people of great wisdom, clarity and empathy in my life.  This was definitely a time I needed to call forth the strengths and skills I had learned from them along the way.

Three C’s followed by three P’s

 From one of my wise mentors I had learned a method for regaining perspective called “the three C’s:” I didn’t cause it. I can’t change it; and I can’t control it.  If ever a situation warranted embracing the three C’s, confronting frontotemporal dementia is it.  The increasing pace of research gives us hope that the future will include ways to control FTD, but at this moment its progression is relentless and the prognosis is completely devastating. 

My mentor taught me to follow the negative three C’s with three P’s: pause, pray (to whomever is your higher power) and proceed.  As I paused to reflect, I knew that I faced a moment of choice.  The reality of diagnosis and prognosis were harsh, but I had to decide how to proceed on this journey.  I pictured that moment as a wooden ruler.  At one end sat the delivery of the diagnosis and at the other end, the prognosis that this will be terminal. No one can truly know the length of time in between, but between those two constants, which embody the three C’s of didn’t cause it, can’t change it, and can’t control, it is a variable about which I do have choices: how shall we live each moment?      

I decided to make the difficult work productive: to make life as enjoyable, dignified, and meaningful as possible for as long as I can, with a spirit of love, empathy, and warmth, and a positive approach to this moment only.  That is what we had as I began to this unfamiliar path, and as the doctor said, we could do the same thing now, just do it differently. 

Finding a way to proceed

 The doctors advised us to start right away to form a circle of support.  Again, the magnitude of the challenges that come with FTD make this much more than a sentimental idea.  It’s essential for both the patient and those caring for him or her.  Reaching out for support can also be hard work because by default, we families carry the responsibility to tell people what FTD is and what assistance we need. 

 The people we have met over the past two years have formed a circle that keeps me aware of what is needed to live This Moment in Time.  Our circle includes our primary doctor, neurologist, clinical director, psychologist, caregiver support group, the good people at AFTD, and our friends and family.  If you build a support structure, then strength, courage, and endurance will follow, and life can flow in to bring you some joyous, moments.

 After devouring every piece of information I could, I realized I needed a way to maximize Richard’s functioning and take care of my own needs in the new role of caregiver.  I developed a tool – we call it “the curriculum” – that works for us and is designed as a way for Richard to experience success, maintain dignity, and engage in activities that will keep his mind stimulated.  At the same time, I needed a plan for self-care to be sure I could maintain a positive outlook.  The curriculum for Richard and for myself has given me a sense of being in charge of my life again, when that feeling could have been in real danger.

Pause, pray and proceed:  it’s a mantra I rely on daily.  I do this through meditation, and my favorite is to meditate on gratitude for little things.  There are many little moments that I treasure.  I carve out bits of time for myself and my friends regularly.  I have very deliberately developed a network of men friends who I have educated about this disease and engaged to have nights out with Richard, so I can have a free night.   I attend a caregiver support group, and caregiver conferences and retreats.  

 Taking care of myself is the most unselfish gift I can give to my husband.  Our deliberate approach to accommodating FTD adds to my wellness and is reflected in his ability to stay active and engaged in valued activities of daily living. It doesn’t make the problems go away, but it does help us deal with some of the aspects of this terrible disease.  My wellness is a product of the choice I made at the beginning and have maintained: 

 

This moment in time is all I have.

Choose to look at what he can still do, not the losses.

 The tornado hit, nothing will ever be as it was.  As Richard and I make our way in this new strange land of FTD there are many adjustments to be made, many frustrations and unwanted challenges.  Yet, we have all that we need.  We need to see what is right before us. We need to pause to be able to access it, and see what strengths, courage, and empathy we have.  I cannot live in the past or predict what the future holds for us in this disease.   I have only This Moment in Time.  What a valuable moment, a treasure.

  

Written by Eleanor Vaughan, caregiver and AFTD volunteer.  Eleanor has developed a comprehensive approach to caring for her husband that is described under Structuring the Day in this section.