When the latest issue of Nursing 2013 arrived in my mailbox a decade ago, the title article caught my eye immediately:
Easing the burden on family caregivers
I'd been a full-time caregiver of a high-level quadriplegic son for sixteen years at the time. I loved my job, but I was always eager to learn anything to ease the workload. I grabbed magazine and scanned past the clinical stuff to get to the end. I wanted to see what their ideas were for "easing the burden."
As I guessed, there was no magic bullet, no miraculous new methods for helping family caregivers. There were, however, some things worth noting. Today, twenty-six years into caregiving, I've pulled out some of their ideas and added a few things we've learned over the years to share with those who care for loved ones.
1. Don't be afraid to ask others for help.
Caregiving is a marathon. No one can take on the crush of duties day after day after day without some respite or assistance. It's hard to ask for help, to feel needy. But those around you may wish they could help somehow and just not know what to do. If you're not comfortable with having them take over the actual caregiving duties, you could see if they would be willing assist you in chores once in a while. If you have the financial resources, you can also pay for such chores as yard work and picking up groceries to save valuable time and energy.
Getting help not only relieves the physical burden, it allows both caregiver and patient a chance to interact with others, a vital necessity for both physical and emotional health.
2. Think in terms of team-building,
After Kevin's initial injury and the weeks in the hospital and rehab, we all felt like victims of the system. A lot of good people worked hard to help our son survive. The medical system is an institution, though, and institutions often must sacrifice individual attention to accomplish the most general good.
In the process, Kevin - and we - often felt marginalized and manhandled. We responded by closing ranks around him and getting home as soon as possible. As he improved, we couldn't wait to get to the safety of home and do things in a way best for us and our son.
At home, we developed our own schedule and cared for our son by ourselves for many years. After more than a quarter century of caregiving and suffering some health challenges of our own, we knew it was time to get help. Though we still do most of the work, we now have a nurse come in once a week. She, in turn, has been able to find us others to help ease the burden. She is, in fact, the one who has championed the idea of developing a "team."
Depending on the type of home situation you have, let others make whatever contribution you feel comfortable relegating to them. Homes certified by the state will need to have substitute caregivers meet certain qualifications.
But by all means, let others mow the grass and bring you groceries.
3. Adapt an assertive coping style early on.
This is probably the most crucial thing we had to learn. Everybody needs an advocate when they are seriously ill or injured. In the fog of a medical crisis, it's easy to accept whatever the medical providers tell you, because they are the professionals. But they don't know your loved on like you do and won't care nearly as much. Being assertive will actually reduce your sense of vulnerability and helplessness. Just be sure you listen to both your loved one and the professionals and understand the landscape before you charge in.
Those who are naturally more passive are more susceptible to crumbling under the burden of caregiving. They tend to stay isolated, worry more, ask fewer questions, and develop a negative attitude. A healthier coping lifestyle involves actively taking charge of the situation, asking questions and pursuing the answers that will benefit both the caregiver and the patient.
4. Learn all you can.
Understanding what is happening to your family member is crucial to providing the best care with the least amount of emotional strain. Research the disease process or injury, available treatments, and the usual prognosis. It's especially important to know such basic techniques as how to correctly turn a person in bed, infection control, and bed sore prevention. Find out what, if any, community, church, and government resources are available.
5. Be kind to yourself.
Caregivers often put the needs of others ahead of their own. In order to take good care of a loved one, you need to be good to yourself, as well. This is easier said than done, since it's often hard to find time for anything besides work. Try to give yourself permission to care for you. Your family member needs for you to be well.
Hospital emergency departments employ a term called "triage" to decide which patients should be treated first. The idea is to put the most important cases at the front of the line. Do this with your life. Develop your own triage system to care for the most crucial chores in your day. If something can wait until tomorrow and you're exhausted, put it at the end of the line. This works well for emotional issues, too. Don't waste your tears on things that aren't worth your energy.
6. Talk to someone.
Develop an emotional support system. Have at least one or two people who you can call when you need to cry, vent, or just talk. Don't just run to those who will agree with everything you say, though. Develop friendships with those who will listen and speak the truth. It's a two-way street; engaging with others gives our lives new perspective. It may even ignite a fresh appreciation for all we have gained through our own situations.
Photo Courtesy Erik Thorson 2023
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