When we think of the end of our loved ones’ lives … if we think of it … we imagine them going quickly and gently into that good night. While this is sometimes the case, the more common reality is that the end of life is a long, sometimes painful slog attended by offspring or younger (usually), more able-bodied (to begin with, anyway) siblings, spouses, or others.
The caregiving role can start with a bang—a catastrophic fall, a stroke, an accident—or a whimper, a gradually diminishing capacity for self-care. However it starts, it often continues longer than you anticipate and involves a level of exquisitely tedious repetition that you wouldn’t have believed possible if you hadn’t experienced it.
You may handle it well, you may not. You may sometimes rise above yourself and what you’d prefer to be doing, you may sometime descend into the worst sort of self-pity, the most extreme emotional melt-down—gales of tears, caverns of dark thoughts, a messy and unbecoming rage at the circumstances visited upon you and the person for whom you’re caring.
Although you would sometimes give everything you own to have your life back, you care about the person you’re caring for. You feel a fierce protectiveness, a deep need to ensure that person’s comfort and safety. At the same time, you feel an equally deep longing to sleep, eat, and indulge in spontaneous activities like a movie or travel without investing thousands of dollars in paid caregivers.
Unless you’re in the fortunate 1 percent, you worry about money constantly. Caregiving highjacks truckloads of it, not to mention productive (i.e., compensated) time and an unquantifiable amount of concentration and focus. It’s hard to switch from external to internal, from listening, planning, and evaluating on behalf of someone else to thinking constructively about anything unrelated to caregiving. The days when you could idly stare out the window, your mind wandering and then focusing on an idea, are few and far, far between. Now, if you have an idea or inspiration or interest, you have to somehow shoehorn it into the mundane: grocery shopping, doctor appointments, bed baths, endless loads of laundry, pharmacy runs, in-home care visits, bill-paying, topping up incontinence supplies. And good luck to both you and your loved one if you get sick or develop, oh, say, back problems. There’s no “Time out, I need to rest today” card in caregiving.
Gradually, your optimism and reliance on the medical profession fade. You realize that at some point, you and the person you’re caring for are out of options, and that until the day caregiving ends, you’re both on your own.
When a calamity hits, there’s a flurry of activity—paramedics and their sirens, emergency rooms and their confusions, family and friends gathering, specialists opining. But over time, people and doctors lose interest. In the first case, it’s hard for people to hang in with someone else’s tragedy; their own lives take precedence, as they should. In the second, once the medical profession has done its thing and the patient hasn’t responded, or is slow to respond, it moves on. It’s called allocation of resources, and if the patient is elderly, those resources tend to be reallocated rather quickly. This makes economic sense, but if it happens to you, it feels like you and the one you love have been abandoned on an ice floe. No, sorry, no more physical therapy, no more occupational therapy, no more speech therapy … what’s the point, after all?
People tell you how noble you are, how wonderful it is that you’ve accepted this responsibility. But unless they, too, have done it, they really don’t know the extent of the responsibility you’ve taken on, and how completely not noble you are in doing so. It’s less a choice than a debt that’s come due. It’s a role taken on because there are no other options that will leave you feeling like you’ve done the best thing for the one you love. It’s a role you take on because you love the person and cannot abandon him/her to this country’s for-profit institutional systems—where return on investment trumps compassion; where bureaucracy rules; where individuals, especially vulnerable individuals, are at risk unless you spend your days (and nights) at their bedside; where simple human kindness and dignity are in short supply, constrained by short staffing and income-generating business models. It’s a role you take on in spite of being terrified that you won’t be able to handle it.
When you become a caregiver, you’re responsible for another individual’s life in many, if not all, of its dimensions. If the person you’re caring for is compos mentis, you share the duty with them. If dementia, stroke, or some other condition has stolen that capacity, it’s all on you. You not only have to figure out the best way forward for your own life, you have to figure it out for someone else’s as well. If you get it wrong, that person will pay for it.
Bringing in paid caregivers is one often-recommended way to maintain your sanity. The downsides—in addition to the cost (see financial worries, above)—involve unknowns about the caregiver’s reliability and responsibility, which can vary wildly; capacity for empathy, for considering what it must feel like to be in the situation the care-receiver is in and how to make that situation more tolerable; honesty; kindness; patience. You can pay someone to show up. You can’t pay someone to care, particularly not to care as much as you do. And it’s not reasonable to expect it. But it would certainly make your so-called “respite” more truly a relief.
So you get some time out, some time alone or with friends and family, and during that time, anxiety hums constantly in the background. You wonder if the caregiver is attending to your loved one or idly surfing the web on his/her cell phone. Engaging with your loved one or texting and posting on Facebook. Tuning in to Downton Abbey (good) or Judge Judy (not good). Wondering what you’ll find when you return. It’s almost not worth the time away.
Then there are support groups. Many people find them helpful, non-judgmental places to vent, forums for advice and commiseration. There may be something wrong with you, however, because you find them demoralizing; they add to the fog already drifting through your days. You come away from the meetings feeling worse instead of better.
And finally, there are the critiques from others who can’t bestir themselves to help but are always available to provide an evaluation of your performance. If only you weren’t so controlling, you’re told; you’re wearing yourself out and it’s your own fault. You wonder what would happen if you weren’t controlling. Who exactly would make the decisions? Who would execute them?
You’ve read that the end of caregiving is not relief, but grief. You contend that it’s both, and that these reactions aren’t oppositional. You most sincerely hope that you survive your caregiving years with the sufficient strength and resources to enjoy whatever’s left of your own life. And that if/when your time to be a care-receiver comes, others will do a better job than you did.
Caregiving tempers you, forces you to face your own shortcomings on a daily (sometimes hourly) basis … to identify the limits of your physical and emotional endurance and to go beyond them because there’s no other option. And while it’s made you more assertive—some might say aggressive—on behalf of your loved one’s needs, it’s also made you more tolerant, more patient, and less judgmental overall. And it’s given you a bone-deep appreciation for the small, daily kindness of friends and family, for their altruistic concern and their practical help.
Every day, you try to do your best for the person you love. Some days you will, some you won’t. But in the end, you will not regret making the effort. And you earnestly hope that your own death comes quickly and quietly and spares all who love you the caregiving experience.