Diance & Al
I never imagined I would be a good caregiver when that responsibility suddenly landed on me. I am not a naturally patient person, and I do not have a medical background other than raising four children and doing the usual mom level doctoring. But when my beloved husband, Al, was diagnosed with a “no escape” death sentence, a stage four lung cancer diagnosis, I stepped into the roles of caregiver and patient advocate overnight. I hit the ground running because I truly believed I could buy him more time. And somehow, with a lot of determination and love, we did. We were given eighteen more months together.
Al used to call me “Ms. Fix It.” I tried to fix everything, the big things and the small things, even the things I had no business trying to fix. I was usually pretty good at it. But caregiving teaches you fast. There are some things you cannot fix. You can only walk through them the best you can, while also trying to keep yourself together. And it is all right if you do not always feel strong. I used to tell myself, I do not lose. I can keep him alive. I always win. Looking back, that was hope talking. Love talking. Fear talking. And that inner voice kicked off our long fight, full of exhaustion, fear, tenderness, anxiety, discomfort, grief, and always love.
I have always kept journals. Writing was how I found my way through my feelings. I never thought those private entries would become a book, but they did. I wanted to help others who might see themselves in my caregiving story. Maybe they would feel less alone.
Fullcover.indd
Here is an excerpt from my memoir, A Widow's Fire: An Intimate Memoir of Heartbreak, Survival, and Moving On, where I write about something I came to know very well. Anticipatory grief. The quiet mourning that begins long before someone dies.
“When caring for someone over time, we may start to grieve that person long before they die, we grieve the loss of the person’s ‘former self.’ Experiencing loss on a daily basis, as well as anticipating the loss at the end of life, knowing what is coming, can be just as painful as the loss associated with a death. Caregivers may experience guilt or shame for ‘wishing it were over’ or thinking of their loved one as already ‘gone’ (particularly when someone has a cognitive impairment). It is important to recognize these feelings as normal.
“Ultimately, anticipatory grief is a way of allowing us to prepare emotionally for the inevitable. Preparing for the death of a loved one can allow family members to contemplate and clear unresolved issues, make end-of-life plans for funeral and burial, and experience their pain in stages. Sometimes, when someone has grieved a death over a long period, there is less grief when the person dies; sometimes there is more pain when a person dies.”
Every caregiver knows what it feels like to put on a brave face while feeling like you are falling apart on the inside. This is true whether you are a family member who takes on the care out of love or need, or a professional caregiver who brings skill and kindness to those who depend on it. No one is protected from the slow ache that comes as a precious life begins to decline.
I became very good at slipping into another room so I could cry, breathe, or simply let myself feel something without Al watching me. He was brave, and I wanted to match his bravery. Anticipatory grief has a way of surprising you at odd times. Still, I worked hard to stay calm, positive, steady, and loving. The love part was always the easiest.
And then Al died.
Even when you know it is coming, even when you have prepared your mind for it, the moment it happens still feels like a shock. That is one of the strange and honest truths of caregiving. You live through all the ups and downs, the laughter, the tears, the quiet moments, the moments of disbelief, and then it ends. The house becomes very quiet.
I would do it all again for Al.
If you are a caregiver, whether you are at the beginning, the middle, or at the very end of your journey, you are not alone. I am here with you. I have spent years working to heal. I have learned that grief does not go away, it only changes shape. I will always grieve the loss of my husband, but I have tried to turn that grief into something meaningful. My book is my offering, my way of saying, You are not alone.
My greatest hope is that my story brings comfort to others who are walking their own path through heartbreak, and that over time they will find their own peace, just as I have tried to find mine.