Earlier this summer, I joined the ranks of the nation’s 34 million family caregivers. I became the primary caregiver to my husband, a role I was neither expecting, trained for, nor am especially good at. And just this week I learned that my caregiving responsibilities may escalate as we determine whether it makes sense for him to receive dialysis at home for what will likely be the rest of his life. For that to happen, I ― known as his “care partner” in all the literature ― will need to be trained in yet one more thing that nurses go to school for years to learn. I will have to be home every night ― and sober, as one caregiving friend jokingly pointed out ― to put the needles in his arm and start the machine just like the real nurses at the real dialysis center now do. I will have to learn how to recognize the signs of something going wrong, how to handle an emergency, and how to stay calm if something unexpected occurs. I will do this five nights a week, while I continue to work full-time during the day and take care of our two children.
The absurdity of this actually happening aside, I listened patiently as the doctor explained at-home dialysis to me and the difference between peritoneal dialysis ― (that’s a permanent catheter in his abdomen from which fluids are pumped in and out while he’s attached to a machine for about 10 hours a night) ― and home hemodialysis (which requires a fistula in his arm and me there to start things up and make sure nothing goes awry as the blood flows out of his body, is cleansed of toxins, and then put back in).
“It may prove technically difficult,” the doctor told me, “but it can be learned.”
“It can be learned,” I repeated after her, convincing no one ― and certainly not myself.
At this juncture, three months into having my family’s life turned inside out, I have just one question to ask: Does anybody actually give a rat’s ass about caregivers? Because honestly, it does not even remotely appear so and they keep piling all this crap on that family caregivers are supposed to do.
Caregivers save the government more than $500 billion a year by doing jobs that nurses and paid professionals should be doing. We do disgusting things like empty urine bags attached to catheters and measure urine output, clean ports, dress wounds, wipe asses and bathe bodies that bear no resemblance to the men and women we loved and married or who once gave birth to us. We cook specially prepared meals, test glucose from blood we draw, give injections and measure bed sores so we can tell the doctor whether they are worsening. We brush our patient’s teeth and hair, make sure they take their pills, remind them how the physical therapist says to “transfer” from being seated to standing. We do their exercises with them in the hope they will one day be able to tie their own shoes again, or speak coherently, or take a few more steps without a walker. But until those things happen, we accept that our fate is to basically wait on them hand and foot ― to do everything, no matter how much it grosses us out. I know a woman whose husband with Alzheimer’s likes to stash his soiled diapers under the bed. She says it reminds her of when the cat brings home a dead mouse as a gift. “Just not as cute,” she says dryly.
Among ourselves, caregivers bitch. We admit to one another that there are days when we hate our patients and hate ourselves more for feeling this way. We want our old lives back, the ones where our spouses were partners and not patients. It’s why we fly into rages when they cheat on their diet, refuse to take their meds, or want to sleep all day. We want them to invest fully in their health ― the way we have been forced to do ― and when they don’t, we want to thrash and scream at the injustice of it all. I remember a note a caregiver sent me: “Today is one of those days that I wish there was a plug to unplug.” We’ve all had those days.
Caregivers deal with everything. The medical care stuff, the appointments, the paperwork, the misfiled benefits claims, the bills that insurance should have covered but didn’t. We spend hours on hold with the VA or Medicare or our private insurance companies. We deal with the doctor who leaves a voicemail saying “better get him in here STAT because he needs a transfusion,” and then we deal with that doctor’s office staff who wants to schedule it for next month. We sometimes hear from an estranged sibling or sister-in-law with “suggestions” about what we should do differently. We call those the “dance on our last nerve, why don’t you?” calls.
Frustration is our middle name and anxiety management our game.
Personally, I’m just hoping to beat the odds that say caregiving could easily leave me dead, broke or both.
Caregivers who drop out of the workforce because they can’t manage their full-time jobs along with their more than full-time caregiving wind up reducing their future Social Security benefits and retirement. Plus, no job, no contribution to a 401k. And anywhere from 30 percent to 70 percent of caregivers die before their patients. Why? Caregiving is stressful. There is no breathing room, time for yourself, no ability to maintain friendships and connections outside the caregiving world.
In the harsh light of reality, family caregiving comes down to this: It is the sacrifice of at least one healthy life in order to prolong the ending of an unhealthy one. It is very harsh, I know, but it’s the truth. Hearing that your patient isn’t likely to make a full recovery isn’t the worst news a family caregiver can hear. It’s that nobody can say how much longer this life-in-limbo will go on.
Truth is, caregivers are the most overwhelmed group of people I have ever encountered. As one young military wife who cares for her husband with PTSD posted on a secret Facebook caregivers’ group, “Has anyone ever had a doctor ask them ― the caregiver ― how they are doing?” I’m betting not. And the answer is: Not very well.