All over this country there are people like you who are driving out of their way to pick up a prescription after work, using coffee breaks to visit someone and make him lunch, missing out on dates with friends in order to make sure someone is safe before they go to bed, or taking trips to the hospital.
We see you (we are you), and you are not alone. In the United States at any one time, 40 million adults are caregivers. You are more likely to be a woman — especially if you’re doing the difficult work of bathing and toileting — though the percentage of male caregivers is on the rise: in 2009, 34 percent of caregivers were men; as of 2017 that number was 40 percent. On average you provide more than twenty hours per week of care for four years. It’s a hard job, but when they look back on the experience most people say they wouldn’t trade it for the world.
But, as the airline industry reminds us: in order to help others, we need to put on our own oxygen masks first. We’ll go even further — since someone in a predicament is relying upon you: it’s selfish to not take care of yourself. Self-care is a muscle you need to learn to flex so it becomes part of your routine, instead of a rare treat. It means paying attention to yourself, even when the only thing you want to pay attention to is your beloved.
Here are some ways to care for yourself.
• Take time for yourself. Foster a contemplative practice of some sort. This means prayer, meditation, yoga, the gym, hiking, biking, dancing, gardening, writing. Find some way to connect with yourself, body as well as spirit.
• Share. Have a short call list of people who will listen, without judgment and talk about anything: colleague, spouse, friend, therapist. It doesn’t need to be a shrink, though they can be helpful, too. Venting over coffee with someone you trust might be enough. One way or another, unbottle yourself.
• Pace yourself. If your loved one is already in the late stages of illness, it’s likely a matter of a few weeks of serious effort. A sprint. If she seems to have months or years to live, you’re in for a marathon. Don’t make the mistake of trying to hold your breath until it’s all over.
• Distract yourself. Movies, golf, books, howling at the moon — whatever transports you for a bit. A glass or two of wine is not a bad idea, but be careful not to slide into coping mechanisms that will hurt you over time.
• Seek respite. For yourself. This might mean finding someone to take your place for a time, finding an adult day care program, or, if on hospice, arranging for your loved one to stay for a few nights in a hospice house or nursing home. Take small breaks as often as possible and longer breaks now and again.
• Watch your health. Be sure to factor in your own health and limitations. Do you need to see a doctor? Are you aching somewhere? Are you keeping current with your meds? Let an honest answer inform how you set up living arrangements for your loved one and when to seek home care or elect hospice.
• Recruit hospice and palliative care. It’s the explicit philosophy of both services to support caregivers. Yes, your own wellbeing is reason enough to invite hospice in.
• Find other people in a similar situation. Just as there are support group for patients with different illnesses, there are support groups for different types of caregivers. Are you the husband of a patient with Alzheimer’s? The daughter of someone with ALS? There’s a group for you. Conduct an online search for “caregiver support” + “(type of illness)” to find those resources.
• Reach out to friends. They probably don’t know how to help you and will be so grateful if you can simply tell them what you need. You can even prompt them: Help me think about anything other than illness.
• Engage HR. Make sure to check with your HR department about whether you qualify for, and how to best utilize, the Family and Medical Leave Act (FMLA). FMLA may not cover you if you work for a smaller business, but you should definitely inquire. FMLA protection or not, if you have a good and trusting relationship with your boss be sure to talk to her about your situation; often enough, there are creative ways to make it all work for everyone.
Taking care of someone requires taking care of yourself; you two are directly and intimately linked. Try to remember the gifts of caregiving: purpose, perspective, love. They won’t always make the toil pleasant, but they will help you keep your sanity. You are engaged in some of the most important and under-appreciated work there is. For all that gets sacrificed to make room for caregiving, many come to feel that the world they entered is more true and rewarding than the one they left behind. Hard and painful though these days can be, someday you might look back and miss them.
From The Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death by BJ Miller, MD and Shoshana Berger. Printed with permission from Simon & Schuster.
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