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Lessons About Caring for the Caregiver

By Liz McLean, F.E.A.S.T. Volunteer

“The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away.”   -Barbara Kingsolver

I’ve had a relatively easy life. There is someone who has always had it worse, right? But I have been hardship adjacent always. A neighbor gets cancer. A friend’s husband gets into a serious car accident. My brother gets shot. My best friend is depressed. My sister-in-law’s mother gets Alzheimer’s disease. Ad infinitum.

Often, we hear these stories and we want to help, but don’t know how. It’s scary to sit with someone during their worst times because I’m afraid I’m going to mess it up somehow. I suspect that others think this too. Because of this fear, we hold back. We censor our words. I say things like “let me know if there is anything I can do to help?” or “My thoughts and prayers are with you.” It feels generic and hollow, but no words are adequate. It feels unnatural. My other one is “that really sucks and I know there is nothing that I can say to make it better.” That one feels more authentic to me.

Currently I’m not hardship adjacent, but hardship beachfront. My daughter is sick with ARFID and I can’t fix her. And doctors are doing their best with this new disorder with no known cause. Besides ARFID she has had chronic GI problems that we’ve fought, but recently this insidious disorder has ramped up with new symptoms and higher stakes. The illness got so big as she literally got so small. Her sickness is like a petulant child who is entering the tween stage along with my daughter and yelling, “pay attention to me!” I feel raw and knotted as I drown in Google results.

Through this, I have amazing friends. My people want to help and inevitably ask, “what can I do to help?” That got me thinking about how we help. I’ve said those words to many, but never really understood what would help best until my own crisis. Given this insight I feel remorseful for the times I could have done more or worse for when I didn’t show up at all. So here are some suggestions now that I’ve been through some tough shit. And while my battle has been ARFID I wrote this mostly in general terms that could apply to helping anyone in crisis.

How to Help an ARFID Caregiver

Don’t ask, just do. Many crises don’t come with a how to help list. Natural disasters do. There are sleeves to be rolled up and debris to be cleared. But most times people suffer without a visible to do list. When I ask someone “is there anything I can do to help?” 99 times out of 100 the answer is no. If you want to do something just do it. Help take care of the nagging things of life. Take that meal. Buy a massage or cleaning service gift card. People may not know what they want or need, but dust bunnies and empty fridges show no mercy when one’s respective world stops.

Listen and talk about the banalities of your life. I used to think it would be selfish to talk about petty things to someone who was in a crisis until now. After updating a friend about my daughter, I begged her to tell me about anything going on. I wanted to know about the boots she scored on sale or about how her husband feels like her third child. It may feel inconsiderate to talk about frivolous things when someone is enduring something serious, but right now it’s fresh air to me. Much of my energy is spent on the momentous, I want the mundane.

Only give advice or your opinion if asked. (I’ll get specific on this one.) This may feel damn near impossible. Everyone has a friend’s cousin who once . . . and we want to share that story at school pick-up. With good intentions, I want to say things like “have you thought about?”, “what you should do is”, and “what I would do is.” (What we should do is strike the word “should” from the English language). A little ARFID 101 to help with the learning curve. No one knows the cause so don’t go looking for it by suggesting something like gluten. Sufferers don’t experience hunger like we do. So please don’t ask the caretaker what the sufferer likes to eat.  They don’t. Period.

We want to have the answer, for both egoistic and altruistic reasons, when our people are struggling. Having now been on the other side of good intentions, I now know what I’ve long suspected. Advice is not one of those things I ought to give unless asked. Recently I’ve longed for the kindness of strangers, because strangers may not feel comfortable recommending tests or diets out of the risk of being rude. They might just see someone who was suffering and try to comfort, not question or fix. If you are a subject matter expert, or know one, by all means weigh in. But if not, best to just listen and seek to understand. And if you are really on your game, show empathy (see number 4). If your friend does ask for advice, give it lovingly.

Show Empathy. An advanced step, but too important to skip if you are able to pull it off. Using words is essential. The other bullet points entail cooking, hugging, and listening. This goes beyond that. When someone shares a hardship it’s easy to acknowledge how much something sucks. That is sympathy. The next step I want to take is to “me too” and “you are not alone”. I do that by taking my heart to a time when I felt similar, or the same, as my suffering friend, and my words come from there.

Some may say “what could I possible contribute that even compares to what this person is going through?” I rarely have the same experiences as my neighbor or friend. However, I am human, and have the same emotional responses of fear, love, anger, confusion, etc. There is an irrational thought that our experiences have to be the same or the same level of burden for us to share them. There is no master list of evie-stevie events ranked by severity. As if personal hardships could even be measured–that’s what makes them personal. When someone has had a bad break-up and another person has been laid off from a job, they have both experienced loss. Once my head and heart has me back at the time of loss, I can talk about how it felt. Empathy comes from the Greek word Empatheia meaning “in (from em) feeling (from pathos). Once you are expressing those feelings you can ask the question “Is this like that for you?” That opens up the conversation for an emotional connection with your friend or in short, that “me too” moment needed in crisis to prevent isolation. We don’t share our own gooey tough stuff because we don’t want to offend. But by not sharing out of fear that our experience won’t measure up, we leave the other person emotionally alone after he/she has been vulnerable.

Don’t show empathy. There’ll be times when you can’t empathize because of nothing to draw from. How do you empathize when your life experience falls short? You don’t. When I was in my late twenties, I was leading a small discussion group with brain injury survivors. The sweetest man confessed that he thought his wife was having an affair. His wife was an incredible caregiver, and I doubted his fear, but I had no way of knowing the truth. But the problem was is that he neither did he. He knew his brain was damaged and questioned his own judgment. I was able to provide comfort and sympathy, but I was out past my skis when it came to empathy. I showed up the best I could without providing empathy. There was no “me too” moment.

Let the person be a mess. I didn’t want to fall apart in front of the police officer who pulled me over for speeding this morning. Normally, I would wish for tears with the hopes of sympathy rather than a citation. I didn’t want to be a mess in front of Officer Jones. But when I think about it, I don’t want to be a mess in front of many. Because when someone falls into a puddle I feel obligated to do any combination of things including cheer them up, find a silver lining, get them to rally or the many other flavors of “rally” such as “man up”, get it together, etc. We are quick to fix. And for me this is due to my own discomfort in the moment. Men get accused of fixing to avoid feeling. But I think women are just as guilty of avoiding feeling in a less overt way. We may not fix but instead we ask a million questions. (I blame all popular programming actually. Things always resolve and too quickly with a musical montage.) I want to try to let people cry more and hope they don’t apologize for it. Because people who are suffering are often caregivers and cannot fall apart in front of their loved ones. I can let my daughter know that I’m scared and don’t have the answers. I want her to see my feelings to the extent that I’m human. But beyond that I have to be her rock. I have to show her quartz even if I only feel like talc.

If you can make someone laugh, by all means do. After you’ve given someone the space to be a mess this is a good one to employ. Laura Ingalls Wilder said, “A good laugh overcomes more difficulties and dissipates more dark clouds than any other one thing.” The funny things in life exist to help us through pain. Yes, comedy is fantastic in general, but humor has the very important job of healing. In my family, we are not the best at a lot of items on this list, but we are masters of this one.

Open the door for details, but don’t go hunting for them. People want to know all the details. Maybe because they think you want to share all the details. I now know why sites like Caring Bridge exist, because it is exhausting updating people, as much as you may like talking with others. My oldest friend wanted to know everything about my daughter’s care. Everything. “And what was the doctor wearing when she recommended the surgery? Can you trust someone who wears Vans over the age of forty?”  On and on until she finally said “I’m sorry. This is too much. Isn’t it?” I was emotionally cashed. I didn’t need anyone to help me evaluate the efficacy of drugs, supplements, Wiccan ceremonies, surgeries, etc. That was already scheduled between 1-4:00 am daily. I needed someone to say, “aw honey” and let me be a mess. In short, let the hurting friend drive the conversation.

Know that we are going to get it “wrong” and that’s okay. Probably the most important item on the list. There are times when I’ve shown up and put my foot in my mouth while stepping in it at the same time. We are going to get it wrong sometimes. Being human, we mess up— a lot. Fear of not getting it “right” is one of the main reasons we stay away from dear friends in suffering. What makes connection through crisis possible is two-sided. Someone has to show up and attempt to comfort the hurt. And the hurt one must show compassion to the friend who is trying to say the “right” thing. A friend of mine impetuously told me that maybe my child was lactose intolerant because “someone she knows…yada, yada, yada, and she’s a new kid now”…etc. My response could have been based in hurt and anger for her ignorance and diminishing my daughter’s health problems to a food intolerance. I could choose to channel my pain into sarcasm and strike her with my words. Thankfully, I know her intentions were good and given the proper time and understanding she would never have chosen those words. When we are the suffering friend, we need to practice Viktor Frankl’s famous words “Between stimulus and response there is a space. In that space is our power to choose our response.” As a sufferer, choose compassion for how difficult it is to comfort sometimes through life’s messy, painful situations.

Hopefully this list gets us closer to building connections with others during times of heartache, which is what we all want and need. To do this we have to show up. I want to be with you along with my thoughts and prayers, not in lieu of. I will try these things and preemptively practice self-compassion when I get it wrong. But I want to at least be the friend “made of dearer stuff” than the one who stays away.

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3 Comments

  1. Lisa Burns

    Liz, thank you so much for this! It’s truly heartwarming and beautifully laid out, how we can help each other AND ourselves. xo

  2. Daryl

    Thanks so much Liz for this beautifully written piece. Poignant and funny and so very human. Showing up for one another in times of distress and crisis, and being willing to listen is such a gift. And just doing something instead of asking ‘what can I do?’

  3. Sarah

    Thank you Liz, this has made me think a lot about how I both give and receive care. I now have a deeper understanding and approaches to try in my own relationships x

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