Caregivers’ Guilt
just a few weeks before Jack’s death
“A month,” she tells me, her tone accusatory.
I learned this when I arrived at the hospital to see Jack and he’s not in the room where I last saw him. I’ve had to hike to another building on the hospital compound to his new palliative room.
There I found the woman who answered when I asked how long it had been since I visited. She’s apparently the spouse of the person in the bed next to Jack’s. Looks like she’s looking out for him. She’s clear. I’ve been away too long.
Her derision slams me with a tsunami of shame. I crawl onto the bed beside him, looking for some sign that he’s just grateful I’ve come but his gaze is blank, not even searching for recognition; his shrivelled shape shrinks from my embrace. I am no longer the woman who advocated for him through three years of cancern, scanxiety, trediation, and chemalarm. I’ve abandoned him to the health care system. And to a stranger.
***
It’s six years since I agonized about putting Jack on a hospice waitlist and three years since I admitted my guilt in MAiD minus 10 - a day in the life of a caregiver/wife. I thought time had performed its miracle on me, smoothing out the emotional wrinkles of the tissue paper encasing my psyche. I knew I had lost forever the crispness of my pre-Jack tissue paper; trauma leaves its mark. But if you’d asked, I’d have likened mine to the sheets of tissue carefully folded and put away on Boxing Day, good enough to envelop whatever other package of anguish I will face in my life.
Yet this week’s horrific dream, described above, suggests otherwise. That decision to move Jack against his will to a facility where he would die apparently haunts me yet.
Google “hospice and guilt” and you’ll get screens full of links. Most take you to hospice websites, where carefully worded statements try to allay the feelings of those who are, like I was, in the unenviable position of being someone’s power of attorney for personal care.
I was too paralyzed to do much Googling six years ago, but had I done so, I would have found reassurance that the overwhelming guilt I had was common. The sites break the guilt down into a number of component emotions, each of which I experienced. They confirm, for example, the frustration I felt with myself for losing my temper with Jack, who, while having been the source of much frustration when he was well, provided almost limitless chances for it as an extremely cantankerous sick man. Those websites also touch on the resentment I felt for having this caregiving and deathwatch role for which I felt ill-suited and unqualified. Other hospice sites talk about the inferiority I felt when comparing myself to others in Jack’s circle who would visit, offer care, and seem so at ease with the role and the situation. Other validation comes from websites that talk about the guilt of hitting the capacity wall - that moment when the caregiving needs exceed what even a devoted spouse can offer, requiring others to step in. (I wrote about that moment for me in Jack’s Last Halloween.) And finally the internet is full of assurance that feelings of guilt for wanting just a little time off from the caregiver role is normal. That’s a source of guilt I felt strongly the night I hosted and catered my stepdaughter’s wedding, just five weeks before Jack’s death, and was in the throes of hosting (read about my love for it in Entertaining as Entertainment) when Jack had his last very unsteady turn around a dance floor. Had I been the dutiful caregiver that night, I wouldn’t feel the regret still today of not seeing him enjoy the DJ’s picks one last time.
Now I know the caregiver guilt from frustration, resentment, inadequacy, and the overwhelming urge to run away are all a normal part of the role. But six years ago? I struggled in the molasses of it, making damned sure no-one knew.
It’s like the drenching menopausal night sweats or not really liking Forrest Gump. We carry secrets to avoid harsh judgment (or in the case of the sweats, grossing people out). Let’s do each other the service of talking talk about this stuff to save ourselves a lot of aggro.
If you’re a caregiver with your own guilt story, please talk about it. Share it in the Comments below if you like.
If you like what you’re reading, there is no greater compliment than to become a subscriber. Sign up below with your email address to receive an email with my weekly blog.