This piece was originally written for the Mainstay Newsletter, a publication from www.wellspouse.org. Reprinted here with permission.
When my husband Vince took his last breath at 9:15 p.m. on January 17 of this year, he crossed over into heaven, while I crossed over from "well spouse" to "former well spouse." In that one moment, as my beloved husband was released from the burden of his devastating neurodegenerative illness, I was released from the overwhelming and excruciating burden of caring for all of his needs through the many years of his relentless physical and cognitive deterioration. But while Vince is hopefully at peace in heaven, my trials in this life have not yet ended, and I am left with the heartbreak of his loss and the need to eventually rebuild a whole new life.
I am very gratified that I was able to care for Vince at home until he peacefully passed away in his own bed, with me and his daughter beside him. But I must admit that there were times over the years when the caregiving was so intense and tortuous that part of me would feel some envy for those well spouses who passed over to the "formers" camp. I knew that I would miss Vince horribly were he to die, but the caregiving demands would sometimes feel unbearable.
Suddenly, in that one moment, all the craziness stopped—just stopped. Suddenly there were no more aides camping out in my house; no more incontinence to control or supplies to keep on order; no more meals to purée; no more medications to crush; no more wranglings with the healthcare system, insurance companies and pharmacies; no more daily schedules to maintain; no more research to keep doing on Vince's unusual genetic condition; no more injections, shaves and haircuts to administer; no more coughing to hear; ... and no more Vince ... no more holding his hand; no more reading prayers to him; no more showing him videos on the ipad in bed at night; no more talking to him and crying to him and singing to him, even though he hadn't spoken in years; no more having him next to me at night, somehow giving me peace at the end of a difficult day.
The usual semi-shock that seems to protect us after our spouses pass away and that gets us through the funeral, eventually lifts after a few weeks. Then it is just QUIET. Really QUIET. I realize I no longer have a daily routine, just hours and hours of QUIET. The memories begin to pour into my mind: not memories of the caregiving years, ironically, but memories of Vince when he was whole and healthy (which was mostly before we were married; he was ill for most of our 17 years together). I miss him, and I start to cry at the many triggers of memories of things we did together.
All the pre-grieving I did during the caregiving years and all the imaginings of what life would be like without him did not prepare me for the intense loneliness and lack of a purpose that I feel now. I am fortunate in having many friends to meet for lunch, a loving church community with activities for me to join, children and grandchildren, but there is still a huge hole in my heart which was occupied by the love of my life. I also mourn my lack of closure, since Vince didn't speak for many years before his death, and the communication we had in the earlier years of our marriage was not great because of the creeping brain illness. So, I am not only mourning his death, but I am also mourning the married life we never had.
I know I will heal in time, and I am functioning well, despite the spontaneous crying episodes and the strangeness of the QUIET. I trust that God has a plan for the rest of my life, and I am now trying to concentrate on recovering from the years of traumatic caregiving and loss, living at my own speed and doing what I feel like doing. I have my Former Well Spouse friends to help me along! You just never know what it's like on the other side until you arrive there—and it happens in one moment.
|For over 10 years, Terri Corcoran cared for her husband who was severely disabled mentally and physically by Fragile X Tremor Ataxia Syndrome. Before her husband became ill, she worked as a translator, editor and arts reviewer. She is co-editor of the Mainstay newsletter and chair of the Well Spouse Association Public Relations Committee. For more information visit www.wellspouse.org |