Three Things People Say that Make a Caregiver Cringe

What do I need? Where do I start?

During our twenty-one years of dealing with disability, people have taken really good care of our family. So I have hesitated to share today's post, thinking that it may make us appear ungrateful.

Believe me, we appreciate every good thought, prayer, and action taken on our behalf over the years. We are truly thankful for the caring people who surround us.

It is written, however, not to complain but to encourage others who might want to help their caregiver friends but don't know how to reach out effectively. Here's a few ideas of what caregivers need -and don't need- to hear from their concerned friends and loved ones. I've included some ideas that my friends have concocted for us that saved our sanity and made us feel truly loved.

1. "Let me know if there's anything you need."

On any given day, I pretty much need everything: rest, hope, money, respite, the weeds pulled in my flower garden. But I'm not likely to call you anytime soon. Our situation has taken so much of our dignity over the years, I just can't ask anyone for more. It's hard to always be the ones in need, so I will probably politely thank you and leave it at that.

I also know that most of our friends and family would gladly help out if they knew what to do. A great way to really assist your caregiver friend is to not wait for that phone call.

Just do something.

Don't worry if it's the right thing. They'll love you for trying, even if it's not really what they needed. Instead of a vague offer of help, pick out something specific and do it. For example, you can ask, "What is your favorite pizza and would Thursday night be a good time to drop it off for you? Or, "I'm thinking of weed eating a few weeds this weekend. Could you use an hour of weed whacking around your yard, too?" Drop off a deli tray or a plate of brownies. Stick a prepaid card in the mail for a meal at a restaurant that does takeout or curbside pickup.

Once when our son was being released from the hospital after suffering a particularly bad infection, a friend dropped off a gallon of milk, toilet paper, and a take-and-bake pizza. She didn't stay long, because she knew we were exhausted. And the pizza could be refrigerated until we were ready to cook it. What an awesome and thoughtful thing to do.

Recently, I had out-patient surgery. Two of my dear friends, who know that I can't ask for help, took charge. Because my husband had to keep up the caregiving at home, one friend drove me to the hospital, waited while I had the procedure, and drove me home. She also brought food for the frig. After I returned home, another friend babysat me for the afternoon while I rested. She brought food, too. I can't begin to tell you how much these two did to ease my recovery and restore my soul.

Helping out a caregiver doesn't have to be expensive, involved, or time-consuming. Just the fact that you took the time to reach out is healing to a family scoured out by overwork and sorrow. Sometimes that can be achieved by simply sending a card in the mail to let them know you're thinking of them or a Facebook message of encouragement.

2. "Be sure to take care of yourself."

Um, okay. I'm trying. But who will do my job for me while I get that pedicure?

Believe me, caregivers know that they need to take care of themselves. But most day, theys are too busy just keeping their heads above water as they are swept down Urgent River. It's like telling a drowning person to take time for himself. He can't do that. He's busy drowning. What he needs is to be pulled to safety, not a haircut.

A great alternative would be, once again, to put feet to your concern. See number one for ideas. Anything you can do to relieve some of the caregivers' burdens can give them a chance to find time for themselves.

You can also ensure that a caregiver is pampered by pampering her yourself. Soon after our disabled son returned home after his accident, a group of my friends threw me a shower at a friend's house. We ate together, they washed my feet, and they showered me with gifts. After all the weeks of standing beside our son as he fought for his life, I had almost forgotten how to do anything but exist in pain. The gift of an afternoon with my precious friends reminded me how wonderful it is to be alive.

3. "You should get out more"

This one is right up there with the previous comment. Obviously, if we could get out more, we would. Caregivers are not only too busy, they are often too tired to keep up much of a social life. This is part of the sacrifice they willingly make to serve their loved one. They understand what they are giving up, and they are willing to do it, which may seem incomprehensible to others.

Caregiving often leads to a sense of isolation and loneliness. Instead of shaming them for not being able to make the extra effort to socialize, consider how you can draw the circle that brings them in. 

Use some creativity if you can't figure out how to get them away for a respite. Why not give them a "shower" in their own home, so they don't have to find an alternate caregiver? You could gather a few friends, replenish their kitchen or bathroom necessities, and have some fun in the process. Or host an evening of bunco or a"movie night" in their living room. Have a barbecue in their back yard and give it a Caribbean theme. Take your life group to their place for a Bible study. Fill their house with laughter and love for a couple of hours and let them be refreshed. Just be sure to ask about any special considerations for their loved one.

Once an acquaintance who loves to cook insisted on preparing a multi-course dinner for us at our house. He even wore a chef's uniform and served us as we sat around the table and took in the wonder of it all. The meal rivaled anything we could have ordered at a restaurant.

What most people who care for others need is, really, just to be remembered on some level. 

Just the fact that you reached out and let them know they are not alone is priceless. Your expression of concern can be as individual as you are. Make it simple, or make it a multi-course dinner. What will matter is the knowledge that someone cared.

The Invisible Man: When We're Feeling Alone

Their faces smile back at me from the Facebook page. They're posing for the camera at a local restaurant. They swam and laughed at the annual "Chicks in the Sticks" camp-out. They're planning a girls' trip to the coast. Events at which I wasn't invited and knew nothing about.

Things I used to do before I became a full-time caregiver and an invisible (wo)man.

Not that I could do any of those things, anyway. My job doesn't come with vacation time. My husband, youngest daughter, and I carry the duties of caring for my quadriplegic son largely without respite. Our other children help whenever they can, but the day-to-day responsibilities are ours.

And I wouldn't have it any other way. I love my job. I love caring for our son. The gains far exceed any sacrifices we've had to make along the way. Since my son's accident seventeen years ago, I've become a certified nurses' aide and then a licensed practical nurse. I've written two books. I speak regularly to others about God's work in our lives. My life is busy and fulfilling.

But sometimes, I see the abandon with which others do things that would take days of planning for me, things which are totally impossible for us now. They all look so carefree. So abundantly full of time and energy and each other.

So totally out of my reach.

Recently my children arranged a rare two-day outing for my husband and I to celebrate our anniversary. As we took in the sights of a nearby city, we saw vacationing families everywhere. People with boats and cabins and time on their hands. I asked my husband, the one who stays up every night to watch over our son as he sleeps on the ventilator, if it bothered him that we didn't have the lives of most people our age. I knew how much he used to look forward to retirement and a chance to travel the country.

He turned to me with a smile and said, "No, I don't. You and are doing something together that is important for our son and for God."

Wow.

How could I forget that Facebook and television and the world I see around me aren't the true reality, but snapshots of lives suffering their own hardships? Everyone feels alone at times.

"Each one should test their own actions. Then they can take pride in themselves alone, without comparing themselves to someone else."
-Galatians 6:4 NIV


While it's true that caregivers often work alone and behind the scenes, we aren't really invisible. We're the point men in a fierce battle for the lives of those who are vulnerable, disabled, or ill. We give hope to the living and comfort to the dying.

Yes, it can be a lonely job. But we're never invisible. At least not to the ones for whom we care and with whom we walk side-by-side.

And to the God who has called us to this wonderful journey.