The Dark Side of Grief...

In this blog and my previous blog, I have talked about grief and how it affected me. What I have not talked about much were the dark days of grief. There were many days when depression and tears dominated my life. Those days have subsided greatly, but they are not completely gone.  

The reality is that I began grieving the moment Pam received her diagnosis. We had great plans for the next several years and a bucket list of places we wanted to experience together. Once the doctor said, “No more travel,” I began grieving the loss of our future plans.  

 But it was not just the plans that I was losing. It was our time together.  After a lifetime of raising a family and building careers, we were finally going to have time that belonged only to us. We could live at our own pace and enjoy the years we had worked so hard to reach. The diagnosis changed that future. Instead of adventures, our lives would now revolve around doctor appointments, caregivers, diminished abilities, and increasing dependence.  

The widely accepted Kübler-Ross model of grief describes five stages: denial, anger, bargaining, depression, and acceptance. But grief does not follow a predictable path. People do not necessarily move through those stages in order, and some may never experience certain stages at all. I do not believe I was ever in denial about Pam’s diagnosis or where it would lead.  

For me, there were plenty of evenings sitting in front of my computer, sobbing and wiping away tears. I could not sleep. I could not focus. I simply did not care.  But it was never really about me. It was always about Pam.  

As I learned more about Lewy Body Dementia and its progression, I struggled to understand how we were going to face what was ahead. Pam lost her sense of time. She could no longer understand the difference between daylight and night. She would sleep for hours and then spend hours watching This Old House on television.  

There were blessings along the way. Pam’s sciatica made walking difficult, which meant she did not wander away from home. She had hallucinations, including one where the bronze elephant doorstop appeared to be moving across the bed. The psychiatrist suggested removing the elephant from the room. Courtney took it to her apartment, and that particular hallucination stopped.  But the hallucinations themselves continued. Several times a day, Pam would carry on conversations with people who were not there.  

We were fortunate that she never developed severe delusions or violent behavior. Without those blessings, keeping her at home rather than moving her into memory care would have been much more difficult.  

Watching Pam experience those changes led to some of the darkest days of my life. I experienced periods of deep depression.  My personality is not one that would consider harming myself, but there were days when I simply did not care about myself.  My only job was taking care of her. My only job was honoring the vows we made when we got married.  

 But being a caregiver was something I was completely unprepared for. What did I know about caregiving? I was an engineer. I spent my life solving problems and avoided most of the emotional things. Some evenings, after getting Pam changed and settled into bed, I would just sit there and sob.  

 Even worse, I violated one of the most important rules of caregiving: self-care.  I stopped walking for exercise. I gained 70 pounds during her last eighteen months. I simply stopped caring about myself.  

 When Pam passed away, I was relieved. Her suffering was over.  But mine was just beginning.  How was I going to live alone after fifty-two years together?  For twenty years, we had been homebodies on our farm in Maine. Our days included taking my Red Hemi to car shows, riding horses together, and traveling in our motor home. The car was sold. The horses were gone. The motor home was sold.  The life we had built together was gone.  What was I going to do?  

There were many days when I was overwhelmed by depression. Even my therapist began discussing the possibility of medication, something I was not ready to consider.  

There were days when I spent the entire day sitting at my computer or in my recliner watching YouTube. I had no interest in doing anything. I could not read because I could not concentrate. I slept poorly, except when I fell asleep in the recliner.  

Then, for reasons I still do not fully understand, those feelings slowly began to fade.  I became interested in the planting area in front of my condo. I started setting up a small woodworking shop in the garage. Little things began giving me purpose again.  

I still have moments when tears come unexpectedly. I still think about Pam every day. But those thoughts are often accompanied by a smile as I remember something she said, something she did, or something we shared.  

There were some very dark days.  But those days were not going to bring her back.