Five Ways to Deal with Caregiver Guilt

Five Ways to Deal with Caregiver Guilt

⠀⠀⠀⠀⠀As a full time caregiver for my husband with ALS, I get so excited for my day off. By the time Sunday rolls around I am more than ready for a break. Typically I use those 8 hours to get groceries and do stuff around the house. Recently I took myself to a movie. I love going to the movie theater! The last movie we’d seen in the theater was John Wick 2.
My friends were busy and I wanted to go to the movies, to do something normal. Before the movie I grabbed a burger. I have no problem eating alone or going to a movie by myself. I’ve been to a concert alone because I wanted to and no one else was available, explored cities by myself when I was on business trips. Alone doesn’t bother me.

Though I don’t mind being alone, I also very much enjoy experiencing life with my husband. We’ve been so active in our lives, exploring different places, trying new restaurants, going to movies and concerts. Without Brian of course there is a certain loneliness that goes along with it, but this is more about the guilt. When I pull out of the driveway on my days off, I immediately feel guilt that I’m leaving Brian behind. He’d get out if he wanted to but it’s so tough on both of us. He tells me to go and have fun and doesn’t make me feel bad about it, thank goodness.
Still, I do. As I eat, I feel guilt. Strolling into the theater and enjoying the sights and sounds of the big screen, guilt. Getting to drive, to walk, to talk, to be normal. Awful guilt. These feelings are there day to day, but they also seem to be directly proportional to the amount of fun I’m having, or enjoyment I’m getting from something.

So, the guilt definitely takes some of the joy out of my days off. At the same time I am acutely aware of how grateful I am for my health and my able body. And for the fact that Brian is so sweet and doesn’t add to my feelings of guilt. I talk to him about it and he says he appreciates that I feel that way, but don’t bother. He accepts what is, and though I’m sure he is envious of me getting out, he is cool about it. I don’t know that I could remain so positive. He continues to inspire me.
I hate ALS. I hate it with every fiber of my being. It’s impacts seem to know no bounds. I don’t want to keep talking about it. I don’t want to keep living with it. I want it to go the f*ck away. From our lives, from anyone’s lives, from existence. Right now, it’s all we can do to manage it and not let it eat us up. We are both determined to do what we can do LIVE with it the best we can and continue to enjoy this thing called life.

While I can’t stop the guilty feelings all together, I do take steps to try and minimize them a bit. Here are five things that work for me. Hopefully at least one of them can help! 


Accept and Own

checkmark icon and a thumbs up to represent accepting and owning the guilty feelings

 Most people are going to feel some guilt for being healthy when someone they love is sick. A wise woman once said something to me that I have come to realize is so true. You can’t help the way you feel.

Recognize that it is guilt that you’re feeling and accept it. Sometimes the guilt comes from getting to do normal things. Sometimes the guilt comes from other aspects of being a caregiver. Either way, call it what it is and let yourself feel it.

Identify the Why

icon of brain with several question marks inside to represent the wondering of why about guilty feelings

Why are you feeling guilty?

As I said before, the guilt can stem from different things. I feel the most guilt when I’m experiencing the most joy from something that Brian can’t do.  When those feelings well up I have to remind myself that it’s not my fault that he has ALS. It’s not my fault that he is trapped in his own body. He can’t do certain things because of a disease, not because of anything I did.

There are times, though, when I feel guilty about the caregiver that I am to Brian. Sometimes I slack on things that need to be done, but that I can put off another day. Like washing Brian’s hair or giving him a shave. If I tell him I want to do a certain task and ask if we can ‘do it tomorrow’ he usually says yes. He’ll tell me if he really wants something but sometimes when I push things off I feel guilty for putting myself first. 

It then becomes finding a good balance of things that can wait and times when I just need to suck it up and sacrifice what I want to do.

Why are you feeling guilty? If it’s ‘because my loved one is sick’. That’s not your guilt to have. But if it’s ‘because I’ve been slacking in some of my caregiver responsibilities’ then take some time to shift some priorities and get back on track.

Stop Comparing

icon of scales to represent comparison. red circle with line on top to represent no or don't

Connecting to other caregivers is important. It helps you feel less alone in the caregiver journey.

Following other caregivers on social media and being in caregiver groups online is a great thing. You can share experiences and learn from others. At the same time, it can lead to a common social media trap, which is comparison.

As with everything in life, people are into different things and live their lives in different ways. Living with a long term illness is no different. There are different types of patients and different types of caregivers.

Some caregivers seem to be so much more together than me. And some seem to be struggling more. That’s kinda life in general right? Be grateful for what you can and try not to compare too much. And remember, social media is very rarely everyone’s 100% truth. Just the way it is.

Try not to compare. It is the thief of joy. One way to lessen guilt is to do the best you can. That’s all you can do, and let others do theirs.

Take it Easy on Yourself

If you’re anything like me, you are your own worst critic. When I mess up, no one is harder on myself than me. I over analyze all the ways I could have done better and why I’m such a loser. It’s something I’ve done for way too long.

For a long time after I became a full time caregiver I would look at my to do list at the end of the day and scold myself for the things that didn’t get done. One day I decided to mix it up and instead of doing that, I would add to my list all of the things that I did but had not planned on. That helped to balance things out and showed me, on paper, that I had done much more than what I’d planned on for the day.

Managing ALS can be a very repetitive thing, but there are some days where Brian’s secretions are out of control and he requires suction multiple times. That throws off my focus, so on those days I add ‘suction’ to the list, or other things that come up. Then, at the end of the day I feel a bit more accomplished and less worried about the tasks that didn’t get crossed off.

Caregiving is such a hard job and comes with so much stress and other emotions. Take it easy on yourself, you’re only human! I’m working hard each day and I need to pat myself on the back more. I bet you need to as well!

Talk About It

icon of two people at a table, facing each other, talking

Call a friend. Call your mom. Meet up for coffee. See a therapist. Talking about your feelings can help in a huge way.

Caregiver guilt is more than just feelings of guilt from being healthy or getting to do fun things that your sick loved one can’t. Often there are feelings of resentment or anger toward the person for whom you’re caring. The patient can’t help being sick and while you know that as the caregiver, sometimes there are feelings of resentment toward them still. Being a caregiver comes with sacrifice. It’s human and normal to feel this way.

It’s normal, yet keeping all the feelings pushed down all the time isn’t healthy. Find someone to talk to. Friends and family might not know exactly what to say but your support system, no matter who, is there to do just that, support you. Find at least one person you can talk to, just to get it off your chest. It can help and then you can work through some feelings, release that pressure and move on. Usually, the person you’re talking to has stuff to unload as well.

Hope this helps anyone dealing with caregiver guilt, at least a little.


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