“Buck Up Buttercup” …and other stupid things not to say to a stressed out caregiver…

buttercup

I know what I need. I need a manual and to know what to say and what not to say when I meet a friend who is clearly stressed to the point of spilling over. I suspect that I am in good company.

The week before last,  I spilled over and I dumped on a staff member in the hall, where people could hear me. Wrong, so very wrong. Then I cried.  Bad judgement, no filter, and no control. I lost it. I was told that my students were feeding off my stress, that I needed to buck up, be strong, and stay focused. Perfect. Problem solved.

This made me think of some other things that people have done or said lately that weren’t particularly helpful:

“You are the rock.” Be careful. Although this sentiment is well-meaning, it doesn’t provide a chance to grieve, cry, or allow an opportunity to feel weak. I cannot be strong all of the time or I will not make it. Sometimes I just need a safe place to unload, to say things out loud to people I trust so that I can process and move forward with a plan. I need people to just listen and nod.

“I know how you feel.” I’m sorry, but no you don’t. You don’t know that every single aspect of my life is up in the air. I feel like the parts and pieces of my life and my family are like the little pieces in a snow globe. Nothing is settled. Everything is uncertain. I am just trying to get some control and some peace. I’ve mentioned it before: “I don’t know how you feel, but I have experienced great loss, disappointment, and illnesses, and I do remember how hard that was,” is a much better idea.

“Just let me know what I can do.” It really isn’t helpful to a person in crisis, because we don’t know what we need. During the last unexpected crisis, I did know that I needed my animals taken care of, I needed my students cared for, and I needed to stay close to my loved one. It was helpful to have meals delivered, for people to pay toward the hotel stay, and for people to bring me clean clothes. The best gifts were money so that unplanned bills could get paid, gas cards, grocery cards, and thoughtful notes & texts that I didn’t necessarily need to respond to.

“How are you doing?’ People mean well, but most don’t want to know and would be shocked by the response. They don’t know how to react to: “I’m barely hanging on by my fingernails. I am at work because I must, but my heart is home. I am terrified about what this is going to do to my budget. What in the world am I going to do? How am I going to pick up his responsibilities and mine too? I am worrying every single second that I am away from him.” The fact is that I am trying desperately to do what I need to do, but my emotions are likely to change at any moment. What I really need is a card, a hug, a piece of chocolate, a cup of coffee, and to be noticed.

“I’ll be over some time and we’ll ——–.” Please don’t say that unless you mean it. My husband sits at home EVERY SINGLE DAY. He is mostly alone except for when Home Health comes for therapy. He is lonely. He needs help with doing yard work and other house projects. The best thing would be a visit and help with a project. His love language is “Acts of Service” and he feels so good at the end of the day when someone has worked side by side with him to tackle home or yard projects. My suggestion is not to promise anything if you are not willing to follow through.

“He will be in a better place.” If you are a believer and a born again Christian, you are absolutely right. However, that isn’t helpful. He’s 50. He’s being taken early. He’s being taken from those who love him desperately. The best place for him right now is here with us. Please don’t say that. It is not his time to go. God doesn’t need another angel right now. Please, I beg of you, don’t say it.

“You are still young and can marry again.” I warn you. If you say that to me, you might lose your teeth.

“God doesn’t give us more than we can handle.” That is crap. He didn’t give this mess to me. God might allow me to go through the storms of life, and what is comforting is that he won’t leave me. He also provides me a way of escape by clinging to him and relying on His people. Then He will use it for good. People are watching and there are lots of opportunities to live out my testimony. However, I am human and sometimes I lose it…like the week before last.

My whole world has shifted. My “Real World GPS” is having fits. Every time we leave the house, I have to think about what equipment we will need. Is it wheelchair accessible? Can he use the walker? Are there rugs that he can trip on? Steps? A ramp? Too crowded? Dementia + Stroke means nothing happens without lots of preplanning and thinking. Bath chairs, wheelchairs, walker, a sling, portable urinal, meds, medical alert system, hospital bed… all with a smile on my face so as to not give him any idea that I am stressed. Totally not fair at 50.

Sometimes I feel like I need an escape, a day to go away and get things done. A day to go and buy new socks, change the oil in the car, pick up prescriptions, or shop for a birthday present. I can’t just run to the store after work anymore, because my husband is home alone, often times scared because he forgot I had a meeting and he plans for me to be home at 4:00, even if I called at 3:00 to remind him. I have to carefully plan, schedule coverage, and check in at very specific times of the day. But what happens when the coverage doesn’t show up? What happens when I need to go away for a couple of days so that I can clear my head and swallow enough fresh air to continue as if I’m not stressed at all? Where will he go? Who will take care of him? I need help, and “I would like nothing more than to spend a couple of days with your husband so that you can go away and clear your head,” would be the biggest gift anyone could ever give me.

As my husband struggles to change the oil, the plugs and the blades on the lawn tractors from a wheelchair, I am thankful for the gains that he is making. He has figured out how to drive one of them by sitting side saddle and driving with his opposite foot. (It looks wicked safe I might add.) This has improved his mood, which has improved mine. The sun has been out, and that has helped as well. The fact of the matter is that when he is happy, I am happy. Well, mostly happy, most of the time.

It’s okay to say, “I’m sorry,” but expand on that. I’m guilty of that too in the past, and now I know that it’s not helpful. “I’m sorry you’re scared. I’m sorry you were dealt this horrible deck of cards. I’m sorry that you’re stressed, worried, on edge. But you’re in my thoughts…” Be specific. Validate my feelings.

It’s okay to say, “I’m praying for you.” It gives me hope.

It’s okay to ask me to go out for coffee. I’m busy and worried and feeling upside down more often than not, but I need people’s time too. I need to vent, to talk about other things in the world, to sit and listen to a good friend talk to me about their child’s graduation, plans for the summer, or their own worries that they’ve been hiding. It’s nice to be distracted. I need that.

“How are YOU doing?” The most important thing that I can stress to people is that the people directly under the line of fire are hurting too. Yes, my husband is hurting. I can’t even imagine what he’s thinking or feeling. But what about me? I can’t help but feel invisible a large amount of time, but this has changed my world. I want to matter too, I need attention from other people, friends, and family. I do not want to feel invisible, and I don’t want my children to feel that either. Because right now we do. Please don’t forget about us. Keep checking in. Keep popping in. Keep sending those little notes and cute puppy and kitten videos that make us smile. We live for it and it keeps us going.

Do something. Say something. Just be there. Something is always better than nothing, even if it isn’t polished or perfect. It shows you care.

*A big thank you to my daughter Elizabeth, for her contributions, proofreading and editing.

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