A common affliction arising in the loved ones of the dying is caretaker burnout. November is Caretaker Awareness Month, recognizing the thankless hard work of Caretakers everywhere.
Caretaking is an honorable but exhausting business that can completely eclipse the caretaker’s normal life. Often, it’s someone with no relevant training. Burnout is especially likely to strike if you’re dealing with a person needing attention night and day, interrupting your sleep, and making you anxious.
Burnout is especially common if you are caring for someone with dementia, between witnessing the devastation and having to constantly be on guard against the loved one wandering off or burning down the house. Not to mention the total disruption a demented person can wreak. And with something like Alzheimer’s, this can go on for years. It’s liable to break down even the strongest person.
Typical signs of burnout include mood swings between anger, sadness, hopelessness, and irritability; sleeping badly; not eating enough or sometimes eating too much; social withdrawal; and pretty much any other stress-related symptom.
Caregivers face guilt about leaving a loved one. There’s the fear of them dying while away (though there are stories of the patient apparently intentionally dying when their loved one is not there because they don’t want them to witness this event—which can be anything but glamorous). There’s also the mistaken notion that it’s unacceptable to do something pleasurable while your loved one is dying. These sorts of concerns prevent people from taking proper breaks from their caretaking duties.
The most basic prevention advice is all that healthy living stuff, like eating right, getting enough sleep (most people need seven to eight hours), and exercising for at least twenty minutes three times per week, doing something like brisk walking that gets you a little out of breath.
You may object that you don’t have time for these remedies, but “Finding time for oneself is the most frequently reported unmet need of family caregivers,” says a Caregiving in America report from 2006.
Social connections have never been more important. You need someone to talk to, to unload on. This can mean friends or family, and it’s preferable to meet in person, but talking by phone is second best. Also, various websites connect people dealing with the same stresses. The Johnson and Johnson site www.strengthforcaring.com and www.cancercare.org are two examples.
Hospice can usually arrange for respite care where someone steps in to provide a break. The Agency on Aging (www.n4a.org) also provides help and advice. Congregants at your church or other kinds of caring organizations are often happy to help out. Don’t be afraid to ask or delegate. People will ask if there’s anything they can do; keep a list to help you remember the things you really need help with for when people do offer.
Sometimes the stress pushes people into full-blown anxiety or depression, which may need medical treatment. Caregivers are often so consumed by their care taking that they don’t recognize problems in themselves. Don’t be dismissive if other people voice concerns about you, even if you think it’s just because they don’t understand what you’re dealing with.
If you’re the busy, competent one in the family, there’s a high risk most of the caretaking responsibilities will get dumped on you if some relative needs tending (the only wise thing one particularly obnoxious attending surgeon said when I was a medical student was, “If you want to get something done, give it to someone who’s busy” so competent/busy people often get overloaded.
If you are being the caretaker, you shouldn’t have to do all the other chores – just because you are the one who’s there. Find the strength to be assertive. If your time’s spent attending to a dying loved one, it’s reasonable to not have to arrange the kids’ carpool, the office outing, the church yard sale, whatever. Learn to say no.
Finally, be aware that your whole life has been disrupted and put on hold to do this honorable and loving task. When your loved one dies, life reverts to normal, except for the large hole left by the sudden absence, of course. Suddenly your days are completely different. Prepare mentally for when this happens. Think about how it will be afterward and plan for returning to daily life, and maybe even for a getaway to recharge your batteries.
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