It’s now been one year since the death of my wife, Clare, after her ten year struggle with Alzheimer’s disease (AD). As an AD spouse for ten years, I experienced more days of sadness and grief than I can count. On some days, my sadness led to severe depression. I wanted to continue living so I could be with my children and grandchildren, as well as with special relatives and friends, but at the same time I questioned how I could ever again find happiness again similar to what I had experienced with Clare. On some days I literally did not get out of bed because I was so depressed. I felt married and widowed at the same time those last few years as Clare’s AD worsened to where she no longer knew my name, or that I was her husband.
There were several inspirational thoughts that keep me afloat during my darkest days as a caregiver, and some of these thoughts were extremely helpful as I dealt with the sadness, grief, and tremendous feelings of loss that I experienced for many months after Clare was gone. I present them here in the hope that one or more of these inspirational thoughts may also be helpful to you.
For many months I kept singing along to two Katy Perry songs ... “Roar” and “By the Grace of God.” On my worst days I sang them aloud, over and over and over again, shouting more than singing, both at home and in my car. In “Roar,” 1 Perry sings about having “the eye of the tiger, a fighter,” and that she is “a “champion.” I wanted to feel like a champion. I wanted to feel in control of my life again, and feel that I was going to come back from my despair and depression.
In “By the Grace of God,” 2 Perry sings about how, after a love break-up, she finds herself lying on her bathroom floor. She sings, “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay.” She also sang about how “the truth was like swallowing sand,” a fairly good description of how I felt on some days knowing that I was losing Clare more and more each day and soon would be widowed ... and how I felt after I had to face the reality that she was now gone forever. Sadly, the only certainty with AD is that death is inevitable ... there are no AD survivors.
There were many other phrases in "By the Grace of God" that I related to ... lines such as "Running on empty, so out of gas" and "Found I wasn't so tough." But that song also had the line, "I am not giving up." Louder and louder, over and over again, I would shout out that song ... and it helped me. A lot.
Something else that helped me a lot was re-reading the “Serenity Prayer” 3 that I keep posted in my home office ... “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” These words reminded me that I had to accept the reality that Clare was dying and there was absolutely nothing I could do to change that reality. All I could do was make sure that Clare was receiving the best care possible and was as happy as possible.
Those same words were just as valuable after I lost Clare ... I had to accept that she was gone from my life, but also accept the reality that I needed to move on with my new life as a widower. I also knew I had to accept the fact that I now had to make some important decisions in my life and not dwell on what might have been or could have been. I had to focus on what I needed to do in order to give myself the best opportunity to live a reasonably happy and healthy life as a widower.
I also came across some very wise words from Swiss psychiatrist Elisabeth Kubler-Ross, who wrote this about grief: “The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.” 4
And that brings me to the last inspirational thought I want to share, words that led to my “Aha” moment. I no longer remember where I read these words or who wrote them, but the author said that when you lose a loved one, instead of looking back with sadness at your loss you should think instead about how fortunate you were to have had your loved one in your life for all of those years.
When I read those words, I literally looked at a picture of Clare and cried ... but I also smiled, recognizing how incredibly lucky I was to have been with Clare for all those years, and how instead of mourning her loss each day I should feel incredibly happy and lucky that I shared 51 years with her. I know that I will grieve forever, but each month I am making progress in learning how to live with that grief.
These inspirational thoughts continue to keep me going even now. I sincerely hope that one or more of these thoughts may also bring solace to others. A caregiver watching a loved one die of a degenerative disease such as Alzheimer’s ... a disease that is without any hope of “remission” or “survival” ... cannot avoid deep emotional pain and anticipatory grief. An Alzheimer’s widow or widower may find that pain and grief remaining for a long time after the death of a loved one.
But if one can find some comfort in the words of others, the path to moving on with one’s life during and after caring for a loved one with Alzheimer’s may be somewhat easier. I know it was that way for me.
Published in AFA Care Quarterly, Spring, 2017, pp. 8-9. NOTE: This issue has a wedding picture of Clare and me on its cover, along with another picture of us in happier times, and includes several more pictures of Clare and me alongside my article. This issue can be accessed online at: http://www.alzfdn.org/Publications/afa-care-quarterly/