(Names and circumstances altered for confidentiality)
I spoke with a group of former well spouses. They began the support group as caregivers and helped each other navigate the difficult practical and emotional minefields through which they all traveled. As the years passed, many were widowed but stayed on in the original support group to help others. Over time, as more of them lost their spouses to chronic illness, they began to realize that they were now all coping with a different set of emotions.
Dealing with these feelings, being able to talk to someone else who felt similarly, and had walked in their footsteps was vital. And so they started a support group for former well spouses to help them deal with the post-care giving fallout they shared. I was amazed at their honesty. They told me that they knew their feelings would not be understood and might even be shocking for those who had never been long term care givers. But, for those who had, they wanted them to realize they were not alone. And so they shared these stories with me.
“This is the first time I am allowing myself to say this out loud to someone outside this group.” said Paula. “But I feel in my heart of hearts that I am not alone in feeling this way, and want others not to feel the terrible guilt I did when my husband passed on. When my husband died, and the hospital called to tell us he was gone, the first emotion I felt, even before the inevitable pain, was relief. It was relief for both of us – but initially, if I am being brutally honest, was my own relief.
He had suffered for many years and I had suffered right along with him. And now I was free. Free of the hell my life had been during the progression of his illness. I felt his pain and my own and now at least, his piece was over. And so I felt relieved – not happy. I knew I would miss him, but I would not miss what had become of our life together. If anyone wants to condemn me for this, let that person spend a day in the shoes of a long-term caregiver. Besides, I pay for the feeling of relief every day, with my guilt for feeling this way – even though I know that rationally, it is normal.”
Nancy understood and volunteered her own story. Her husband had been hospitalized just before her son’s bar mitzvah and so he was not able to attend the simcha. After the initial shock (and once she knew he was not in crisis and was being well cared for) she, too, said relief was her paramount emotion. She said for the first time she could feel what it was like to have a simcha like everyone else. She could give her son all the attention he needed and deserved without having to divide her attention between him and her husband.
She even had time to do some things for herself, like get a manicure and get some sleep before the simcha. Her husband’s needs were in the hands of the hospital staff. She was free to enjoy the simcha just like people who don’t have to attend to sick spouses do. It was wonderful. And because of her enjoyment, Nancy is also consumed with feelings of guilt that has haunted her for so many years, to this day.
As I talked to these former well spouses, I realized that young caregivers – the well spouse with living partner, were just at the beginning of their journey. This was a path of complex emotions and complicated relationships that would not end, even after the ill partner passed on. These were spouses who might very well be haunted for a very long time for simply feeling good about what the rest of the world takes for granted.
They were guilt ridden because they felt good about being able to lead a “normal” life, if even only for a few days or a few hours; culpable, because they could enjoy a simcha without the added burdens of caregiving. They coped with self-reproach because they suddenly felt happy about a future life with fewer complications. And so, they needed the support of their peers and for them that meant former well spouses.
They were dealing with feelings of guilt that they weren’t sure even current caregivers would understand, until they, too, would experience it. And I wondered when I left them, if the ripple effect of living with illness for so long ever ends, or if it just continues on a new level, forever.
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