Toll free: 1-855 542-5672 (1-855-KICK-MSA)

“On the Importance of showing up & trying” – By Kimberly Bohannon

Kimberly S. Bohannon was a caregiver to her husband Steve, who passed from MSA at the age of 49. She regularly writes about her experiences in a blog on Medium. Today, for the first time, we share an excerpt from Kimberly’s blog about caring for her husband.

Are you uncomfortable being around terminally ill family and friends? Here are some tips on visiting with a loved one.

Like many people, before I became a caregiver to a terminally ill and disabled husband, I used to be afraid to be around a friend or family member who was terminally ill. I was uncomfortable, I didn’t know how to act, and I didn’t know the right things to say. I was afraid of what THEY might say and then how I might respond.

In my mind, I could already see how this would play out: I would say something thoughtless like “How’s it going?” and then my friend or loved one would respond with “Terrible! Can’t you see I am dying here?”. Then I would stumble into an awkward, apologetic drama of “I am so sorry” and “I understand it must be terrible what you are going through.”

Truthfully, I had no clue what they were going through. I just tried to overcompensate my fear of what to say. Then as quickly as possible, I would find a ridiculous excuse to leave. Well, at least in my mind, that is how it was going to happen. I get uncomfortable just thinking about how I used to act.

I now realize it wasn’t my fault for not knowing how to act or what to say. I don’t think there is a class in high school, college, or marriage counseling on doing this. If I were creating it, I would call it “Terminally Ill Conversation 101: How to hang out with your terminally ill friend or loved one and not freak out”.

As a caregiver, I encountered this scenario quite a few times. I have a couple of tips I want to share based on my experience to help you overcome your fears!

1. Show up. This is the easiest thing you can do for your loved one and probably the hardest thing for you. It means you have to acknowledge your fears and the reality that they are dying. You don’t have to bring flowers or food; however, I can tell you from personal experience I would never turn down either. The point is you don’t need an excuse. Just show up.

2. Be yourself. Remember, they are the same person on the inside you have known or loved; they look different outside. If you call that person a funny name, it is ok to keep calling them their nickname. If you always gave big hugs, keep giving big hugs as long as it is ok with your friend or loved one since we have just been through a pandemic. You probably think to yourself, wait a minute, they are in a wheelchair, or they have wires and tubes coming out of them. Ok, well, then improvise. Don’t pretend all of that stuff isn’t happening. It is ok to say, “I want to hug you, but I am afraid I might get electrocuted with all of these wires you are attached to,” or maybe “I would love to hug you, but I am so clumsy I will probably disconnect your feeding tube.” I have attempted this one and almost pulled out my husband’s feeding tube a time or two because I am clumsy. Ok, perhaps I have a very warped sense of humor. Being a full-time caregiver for six years to a terminally ill and disabled husband will do that to you. It is called a coping mechanism.

3. Give yourself grace. You might stumble through this. You might say the wrong thing. You might cry, and you might not know what to say. These are all ok. None of us have this all figured out. The most important thing you can do is try.

I still don’t say the right thing every time I am around a terminally ill loved one or friend. I still get uncomfortable when I see someone I have known in better health, and now they are in a wheelchair, using a walker, or very feeble. I get uncomfortable because I have to face my own mortality. I have to face the fact that someday, I may be in that same position. I have learned to give myself and others around me grace and show up and try.

To read more from Kimberly, please visit her blog on Medium.