You are a compassionate person.
When you hear that someone you care about has become seriously ill or disabled, of course you want to help.
It’s hard to know what to say or what to do. The awkwardness can be immobilizing.
Fortunately, there is a way you can help your loved one. A way that you probably haven’t thought about, but that will have a tremendous impact on their day-to-day well-being.
Take care of their caregiver.
Why You Should Reach Out to Caregivers
Most people have no idea how demanding family caregiving can be.
We live in a time when most aspects of our lives are automated and streamlined.
You can hire a specialist to help you with anything from organizing your home to fixing your car to launching a website.
You can purchase groceries, toilet paper, and virtually anything else you need from home and have it delivered to your door.
Even dating has become automated, with online matchmaking services designed to locate your most compatible partner with a minimum investment of time on your part.
Is it any surprise if you didn’t realize the enormous cost in time, emotion, and energy still expended by family caregivers? It’s something most people don’t consider unless they find themselves in that situation.
Truth is, family caregiving can be extraordinarily demanding work, and it is often done under enormous physical, mental, emotional, and financial stress.
Because the caregiver is the person most directly responsible for a patient’s well-being, that caregiver’s mental, physical, and emotional health is key. Yet there is no systematic support in place for family caregivers in most communities.
At best we tell caregivers to practice good self-care. But that often isn’t enough.
Most caregivers are already using the best options they have for respite and support, but chances are those resources are stretched thin by the needs of the family member they are assisting.
Some caregivers may be struggling so much to keep up with the needs of their loved one that anything extra—even something potentially helpful, like building support for themselves—just doesn’t make it onto the agenda.
I was my husband’s caregiver for the last year of his life, prior to his death from cancer. But despite that, I never googled caregiver support until writing this article.
Why not? It honestly didn’t occur to me. My life was so focused around caring for him that I barely remembered to eat. When his survival was in question, my own needs didn’t matter to me.
And besides, I didn’t have the time.
Understanding the Life of a Caregiver
In the months following my husband’s diagnosis with stomach cancer I cooked five or more meals a day. Don could only eat a few bites at a time, and he was often too nauseated to want to try. Constant fresh food was one way to encourage him to consume more calories.
Meanwhile, I lost 30 pounds in the course of a few months.
As the disease progressed, Don was often awake until 2am, sometimes longer, struggling with pain that worsened at night. I stayed awake with him.
Then in the morning he rested while I helped our four youngest children get ready for school and I went to work.
As Don became sicker, he was able to do less and less. Eventually he waited in bed for me to come home in the afternoon and help him bathe, dress, and take medications. I also took him to all of his many appointments.
I spent my evenings caretaking. Often that meant doing the things he was not well enough to do: shopping, laundry, cooking, cleaning, yard work, and transportation and homework help for the children. There was never enough time to just sit together.
It would have been a grueling schedule for someone who was not emotionally invested. But I was also processing my own grief.
I didn’t cry in the quiet of my room, at lunch with a friend, or out in nature, because I didn’t have time to spend in those places. I cried my way through the grocery store. I cried doing laundry, cooking, and cleaning. I cried while trying to learn the house and yard chores Don had always handled.
I tried not to cry through doctor visits and chemotherapy appointments, while helping him keep up with the job he was still trying to maintain virtually, or during the late nights when I sat awake and comforted him through the pain. But I wasn’t always successful.
Then, during the last month of his life Don was hospitalized. My job as a caregiver intensified.
He was often confused because of the high doses of medications he was taking. He tried to jump out of bed and pull his IV out. Sometimes he was combative toward others, but he calmed for me. Because I didn’t want him to hurt himself, or the staff to resort to physical restraints, I stayed with him day and night, sleeping in short spurts and timing even bathroom breaks when I thought they would cause the least disruption.
My experience isn’t unique. Although every caregiver’s circumstances are different, many are even more challenging than mine. All of them share the common link of being extraordinarily demanding, and at the same time largely invisible to the people around them. Caregivers rarely advertise the full extent of the challenges they are navigating.
Reaching out to acknowledge and support the work of family caregivers can make a difference in their ability to continue supporting your loved one, as well as in the quality of care they are able to provide.
How to Support a Family Caregiver
Help with everyday responsibilities: Most family caregivers are spread thin trying to keep up with normal responsibilities in addition to caregiving. You can help them to be more effective caregivers by easing some of that pressure. Ask if you could help with practical responsibilities like:
- Cooking (ask if there are special dietary restrictions)
- Yard work
- Pet care
- Paying bills
Offer comfort and support: When I was living in the hospital, small acts of kindness helped me to continue day to day. My daughter bought me a soft, warm blanket that I could wrap up in. A friend ordered turkey and mashed potatoes to be delivered to me when I didn’t leave the hospital on Thanksgiving. Family members brought me clean clothes and did my laundry for me.
Caregivers in different circumstances might appreciate a gift card for a massage, tickets to a movie or special event, or an offer to stay with their loved one so they could have a brief respite.
Comfort items like essential oils or flowers might brighten someone’s day.
For most family caregivers, watching their loved one decline is emotionally distressing, but there is often little acknowledgment or support for their emotional experience. Your acts of kindness communicate that you recognize and value them.
- Honor their schedule: Many patients have disrupted sleep, or specific times when procedures need to be completed or medications given. Caregivers may need to schedule visits around the patient’s needs or their own limited opportunities to rest or do essential tasks. Match your schedule to theirs.
- Help them manage communications: Understand that it can be time consuming and emotionally exhausting for caregivers to discuss the patient’s progress in detail repeatedly with many interested loved ones. They may not be able to spend the time they would otherwise making and returning phone calls. Don’t take that personally. Support their efforts to keep communication manageable. It may help to schedule updates through a designated contact person, for example.
- Don’t argue with treatment decisions: You don’t understand your loved one’s individual medical needs as well as their own team of doctors does—not even if your uncle’s neighbor had a similar condition, and not even if you looked it up on google. It is exhausting and emotionally difficult for caregivers to be asked to repeatedly justify decisions that they may not have personally made, and that almost always involve complicated medical and personal factors.
- Listen to what the caregiver has learned: They know more than you do about what is working the best right now for your loved one. Let them guide you in how to be helpful.
- Don’t make it about you: Your loved one’s condition impacts you. But it impacts you far less than it does the patient and those caring directly for them. That means even if you are hurting, focus on being loving and supportive to your friend and their caregiver. Look elsewhere in your support system to process your own feelings. Click here for a great discussion of this topic.
- Share appreciation: Write a note of appreciation for their efforts. Let them know that you see and value their extraordinary efforts.
You Can Make a Meaningful Difference
You know that feeling—that awkward helplessness that comes when you don’t know what to say or how to help.
You wish you could make the pain go away for your loved one, but nothing you can do feels like enough.
Fortunately, there is a way to meaningfully contribute.
When you reach out to support the person caring for your loved one, you help ensure that they can provide the best care possible, day after day, in big and little ways you could never have foreseen. You can support them in doing their job. And you can make a difference.