Being a Caregiver

By Donna Schempp, LCSW

Caregiving often creeps up on you. You start by dropping by your mom’s house and doing her laundry, or taking your dad to a doctor’s appointment. You find yourself doing grocery shopping and refilling prescriptions. Gradually, you are doing more and more. At some point, you realize you have made a commitment to take care of someone else.

Sometimes, caregiving is triggered by a major health event, such as a stroke, heart attack, or accident. Maybe you suddenly realize that dad’s memory lapses have become dangerous. Life as you know it stops and all your energy goes to caring for your loved one. Caregiving has become your new career, and you adjust to a new normal.

The Caregiver Role

Caregivers can be spouses, partners, adult children, parents, other relatives (siblings, aunts, nieces/nephews, in-laws, grandchildren), friends, neighbors. Whatever your relationship with the person you’re caring for, it’s important that you add the title caregiver to the list of things you are. Without identifying yourself as a caregiver, you won’t know to search for resources that can help you navigate this new role.

But caregivers play other roles as well. You may be employed full or part-time. You may be raising children, or be a volunteer, a spouse, have other family commitments. Adding caregiving to that list can easily lead to frustration and exhaustion. You might need to navigate social service systems, call doctors while you’re at work, advocate for the care receiver, and take care of their day-to-day needs, while you try to do all of those same things for yourself and your family.

You are rarely trained to do the broad range of tasks you are asked to do as a caregiver. As a result, you may end up, for example, with back strain because you haven’t had the benefit of training from a physical therapist on how to correctly transfer someone from bed to chair or wheelchair to car. Or you find yourself battling with your mother who has Alzheimer’s because you have not learned the skills necessary to communicate with someone with a cognitive impairment.

Here are some of the common tasks caregivers do:

• Buy groceries, cook, clean house, do laundry, provide transportation
• Help the care receiver get dressed, take a shower, take medicine
• Transfer someone out of bed/chair, help with physical therapy, perform medical interventions—injections, feeding tubes, wound treatment, breathing treatments
• Arrange medical appointments, drive to the doctor, sit in during appointments, monitor medications
• Talk with doctors, nurses, care managers, and others to understand what needs to be done
• Spend time handling crises and arranging for assistance—especially for someone who cannot be left alone
• Handle finances and other legal matters
• Be a companion
• Be a (usually) unpaid aide, on call 24/7

What are all the things you do? Try making a list, both for your own clarification and for other family members who may not be aware of your efforts.

First Steps for New Caregivers

It’s easy to become overwhelmed as a new caregiver. Here are some steps that can help:

• Identify yourself as a caregiver
• Get a good diagnosis—from a specialist or geriatrician if necessary—of your loved one’s health condition
• Learn what specific skills you might need to care for someone with this diagnosis (Caring for someone with Frontotemporal dementia, for example, is different from caring for someone with chronic heart disease)
• Talk about finances and healthcare wishes
• Complete legal paperwork, e.g., Powers of Attorney, Advance Directives
• Bring family and friends together to discuss care
• Keep them up to date on the current situation
• Identify resources, both personal and in the community
• Find support for yourself and your loved one
• Remember, you are not alone

Keys to Caring for Yourself

It‘s one thing to gear up for a short-term crisis. But it takes different skills to provide care over a longer period of time. You’ll be more successful if you learn to take care of yourself, starting immediately. Some things to remember:

• You cannot be perfect
• You have a right to all of your emotions
• Depression is the most common emotion of long-term caregivers
• Set realistic expectations—for yourself and your loved one
• Learn about the disease and what you can expect
• Learn the skills you need to care for the care receiver and which ones you are or are not able to perform
• Learn to say “no” to things you cannot do
• Learn to accept help from others
• Build resilience
• Identify your button-pushers/stressors
• Identify your coping skills
• Remember the big three for successful coping:
• Eat right—good nutrition as opposed to stress-snacking. Limit alcohol and other drugs
• Exercise—it may be hard to find time but it’s the best cure for depression and increases your endorphins (“good” coping hormones)
• Sleep—7-8 hours is hard to get but essential. Admit when you are experiencing burnout and get help

Most importantly, remember that taking care of yourself is as important as taking care of someone else.