Saturday, March 26, 2016
What Happens to the Caregiver When the Ill Partner Needs Surgery?
A dear friend had an episode of dizziness and a touch of confusion the other day. He is now scheduled for open heart surgery. You never know when a wound that's slow to heal or a bruise that just grows worse or a cough that lasts for months will wind up being a diagnosis you really don't want to hear. The point is not to live in fear; but to really live.
My friend has been getting MRIs and ultra sounds, talking with a multitude of specialists, touring cardiac ICUs of local hospitals. Every clinician he meets is friendly and reassuring. All his questions get answered. He is being well looked after.
His wife, however, is relatively invisible to these excellent professionals. She is an appendage, a steady hand to hold his frightened one. Not one of these very excellent clinicians asked her if she had any questions, much less how she is doing. And much less, how they are doing coping with this crisis together.
The partner in these situations is too often, sadly, a sidebar. But a side bar of whom much is expected. The partner is expected to be fully present during the hospitalization and fully responsible for the heavy load of caregiving that will be needed when the patient is back home. And the caregiver must give care whether or not she/he is exhausted from sitting for days at the hospital bedside, missing sleep, and eating badly. And she/he must take on the heavy care load at home that often involves helping the patient move, dress, shower, get to doctors' appointments, in addition to grocery shopping, laundry, child care, and going to work. And all this is on top of the caregiver's emotional exhaustion that comes from fearing the worst, watching her sweetie in pain, and feeling illegitimate for having her/his own needs and frustrations.
How much more bearable this load would be if health care professionals understood that their patient's outcome will be strengthened or weakened depending on the resilience of the caregiver and of the relationship between the patient and caregiver. If the caregiver sinks, the patient will sink even lower. If the caregiver feels recognized and appreciated by providers, she/he will transfer that support back into the caregiving relationship.
Of course, not all providers neglect the caregiver. And not all caregivers can, or want to, serve as caregivers. I would like to hear about your experiences as the caregiver at a time when your partner needed hospitalization. Did you feel recognized, or invisible?