A great number of Americans end up as caregivers for their loved ones. This can happen quickly or slowly, overnight or over years with gradually increasing care needs. Whether through disability or aging, life hits people hard.
The rising costs of health care mean that many families can’t afford professional help or assisted living. Even if they can afford assisted living, adult children become caregivers for their parents in the sense of needing to make difficult medical and financial decisions on their behalf. Spouses and siblings can also end up shouldering the responsibility for care.
Caregiving is difficult, even for extended family members and professionals. It’s draining, heroic work. Even professional nurses deal with compassion fatigue and have to take care not to let being a caregiver affect their personal lives. But what if being a caregiver is your personal life?
How to Avoid the Perils of Caregiver Burnout (and Why You Must)
In dealing with those who are undergoing great suffering, if you feel ‘burnout’ setting in, if you feel demoralized and exhausted, it is best, for the sake of everyone, to withdraw and restore yourself. The point is to have a long-term perspective.
– The Dalai Lama (more quotes)
I’ve experienced both forms of caregiving, although luckily not for immediate family members. When I was only 10, my mother was a live-in caregiver for an Alzheimer’s patient, and so I spent those years living alongside dementia and learning about giving care. When I was in university, I took a summer job caring for a gentleman with cerebral palsy. I’m by no means a professional, but I’ve had some experience with the tolls of caregiving, both as a child and as an adult.
Give yourself permission to be fatigued
Many people run themselves ragged out of the sense of both responsibility and guilt; the notion that it’s “not about you” but about the person receiving the care. This much is true, but remember that your health is an important factor in your ability to function as a caregiver. Correlations have been noted between stressed caregivers and shortened lives of dementia patients.
It’s not selfish to need personal time, to be fatigued, or to struggle with burnout.
In a sense it’s more difficult for a non-professional caregiver to find the right balance — especially for people who work, and then have loved ones to care for at home. Maybe childcare enters the mix, making life even more complicated.
So what does permission to be fatigued look like in this situation? Okay, you’ve allowed yourself to say “I’m fatigued,” but it doesn’t change the fact that you don’t have the time or money to do anything about it.
The next thing you need to give yourself permission to do is seek help, professional if necessary. Don’t feel bad asking family or friends to help you take a day away or an afternoon to run errands. Get in touch with a social worker, look into nonprofit care programs in the area, and look into your state’s medicare/medicaid program (if you’re in the US) to see which services and benefits your loved ones might be eligible for.
Know the difference between caring and enabling
Making the decision to move loved ones into care facilities can be excruciating. Quite often, people who are aging will be very resistant to accepting professional help or leaving their home, even if they agreed to do so “when the time is right.” The truth is, the time will probably never be right for someone to abandon their home, especially if they are already suffering from dementia. But the time will, eventually, be necessary.
Many people, feeling unable to “be the bad guy” and force the issue, opt to take care of their aging relatives rather than push them into assisted living or get them diagnosed. They decide to provide care either by visiting them often, moving into their loved one’s home, or moving the loved one in with them.
The problem is that aging-related health difficulties get worse, not better, especially without professional intervention. Sooner or later, you won’t be able to keep up. Out of forgetfulness or stubbornness (or both), people who struggle with dementia miss medical appointments, lapse on bill payments, and eventually behave in self-destructive ways.
It’s extremely important not to keep emergencies or serious health issues “in the family.” If someone falls, passes out, or suffers even a minor injury, it’s not a betrayal to call emergency services instead of helping out yourself. This can result in diagnoses for conditions even you may not have known about.
The fact is that the more you try and take on the difficulties of care, in order to avoid ugly conversations about power of attorney, loss of driving license, and assisted living, the more you enable an unhealthy and dangerous lifestyle. Don’t let guilt limit your choices when it comes to providing care for your family. Running yourself ragged just to enable a continuation of dangerous living conditions doesn’t help anyone.
In the end, it might not even be as disruptive as forcing someone to leave their home. Health technology is improving all the time, and a greater number of people are able to age in place thanks to remote monitoring technology, along with regular caregiver visits.
Sometimes, the only solution is outside help
If you’re sick of reading articles about “taking time for yourself” because they’re unhelpful when you have no time in the first place, that may be a sign that it’s time to ask for help. Time is a luxury that some people just don’t have. But living that way, with no time for yourself, is unsustainable. Eventually, it all comes crashing down and you and your loved ones get hurt.
Caregivers need a number of tools to function effectively: legal tools, enough medical know-how to help administer medication, and perspective about one’s own emotional health, to name a few. To succeed, caregivers need a support network that can help provide them with these tools.
In my experience, the only real solution for people whose lives are dominated by caregiving is to seek help. That help can come in many forms — just remember it’s not a failure to ask.
- State Elder Care Resources
- Community Care Programs
- AARP Caregiver Resources
- State Medicare Information
- Resources for Adults with Disabilities