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?
2 comments:
I can't agree more with this article. My husband was diagnosed with myxoid liposarcoma and had three surgeries this summer. I took care of our joint business, of our two young children, of the household, and, of course of him. All the trips to the hospital done in the limited windows of time between dropping a child off or picking them up from daycare, client calls, home chores, etc., drove me crazy. When he would come back home I'd have to push my emotions to the side and be whatever he needed me to be. He would pour out all of his pain and frustrations on me because he didn't want the kids or our family or employees to see him like that (he is very prideful). And I had to swallow the insults, the neglect, the rage, and smile and be there. All the while knowing that this whole thing can last for my entire life. We are in our mid-thirties, and some mornings I wake up not wanting to get out of bed.
And now fall is here and so is a recurrence of the tumor. He is headed into surgery next week and I am trying to hold back tears. How long can I keep it up before just dissolving into a mush of stress and resentment???...
You have carried such a heavy load for a long time. I can understand the tears and the resentments. How could you not be feeling that way. I wonder how you and your husband have weathered and negotiated through other complicated, awful situations. Is there anything you can bring to bear from past resolutions?
I often tell couples that while the illness is in one person's body, it's two lives that are dislocated, and two people who have needs. The ill partner is not the only one suffering. I wonder if there are moments you can carve out to replenish yourself -- going to Starbucks, for a walk, coffee with a friend. Are there some limits you can set with your partner? Can you tell him that you need to take a 2 hour break? Or that you just can't listen to his frustrations and pain right now -- but maybe later? I guess I'm asking if you can make even a little space for your needs. I hope you find some respite.
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