Almost daily, the same thoughts play over again in my head… Why do I feel so guilty about my ability to care for my loved one? There doesn’t seem to be enough time in the day to get things done for them, let alone for myself. How do I handle the guilt and anger? Resentment is setting in as my loved one is taking so much of my time and energy! There is nothing left for me at the end of the day. I am so busy that I don’t have time to eat!! If this sounds like you, know that you are not alone. It is time to give yourself grace!

Caregiver guilt doesn’t end when a loved one’s life does!

It continues until you begin to heal from the pain of losing them, and from the self-realization that you did all you could, and it was ENOUGH.

You question what more you could have done to help during their care journey. And when the doctor’s care plan calls for removing sweets from their diet, your first thought – is it really worth extending their life? In your mind, their comfort and happiness (quality of life) outweighs more time with them. After all, time is not on their side at this point, and their favorite foods seem to give them comfort, so why take them away?

During the most stressful moments in my care journey, emotions got the best of me.

I lashed out at everyone around me and was impatient everyone around me. And when I thought about why, I wondered if it was me or the disease taking control of my loved one? Emotional exhaustion set in, and I often thought I couldn’t add another thing to my plate! It was full. All I wanted to do was pull the covers over my head and sleep; sleep through the sadness of it all and through the exhaustion I was feeling deep inside. When I was alone and was sure no one could hear me, I screamed for someone to please help me! But when the dust settled from my tantrum, I realized no one was coming to help. The emotional rollercoaster I was on was one from hell, and all I wanted to do was to make it stop. After all, I wasn’t sure what a caregiver was anymore, but this was too much for me to handle.

It seemed like all I was doing was walking in circles and getting nothing accomplished!

Have you ever felt like this? Perhaps you are in the middle of your care journey and are wondering when and if these feelings will ever stop. If I am being honest with myself, I felt all these emotions and more when caring for my mom years ago. Now with my dad, my emotions are all over the place once again. Some days ‘my cup runneth over’ with empathy and patience as I maneuver the challenges of caregiving. Other days it is downright painful, and the guilt is too much for me to bear! My promise to be there for them is drenched in guilt and resentment. Emotions are out of control, especially at the thought of losing myself in the process.

I lost my mom 20+ years ago and am still working through the guilt about her care. Could I have done more during her illness? When she craved sweets, should I have given them to her regardless of the doctor’s orders? Looking back on her care journey, I wrestled with the guilt of withholding comfort foods (sweets) from her. Rather than let the lack of sugar in her diet be a point of frustration for her, I followed doctor’s orders. Her last months were emotionally frustrating as her cravings for sweets intensified.

Feelings of overwhelm caught me off guard, and my frustration about her care and the guilt that accompanied it took over. Breathing through the anguish was not an option for either of us. Often, I felt I could not take a few moments to myself just to breathe! There was no way, or so I thought, to take a step back and collect myself so I could be the best daughter I could be. I needed to be there, to be strong for her, understanding of her illness, and in charge of her care plan. The guilt of second guessing everything about her care was more than I could bear! She depended on me, so she didn’t have to worry about her disease, and the pressure to get things right with her care was tremendous.

So many emotions flood our minds when we are in the middle of a caregiver crisis.

But these emotions kept me from forgiving myself. 

GUILT

I had feelings of guilt like I never felt before. Guilt that I was not doing enough in mom’s time of need and wishing I could have done more. Overwhelm and resentment followed because I realized I was all alone, while everyone around me was living their best life. Realizing I couldn’t do the simplest things for her with a better outcome brought me to my knees. Each time I thought I had forgiven myself, guilt wedged deeper and deeper into my mind. It was relentless.

FEAR OF FORGIVENESS

Once the diagnosis settled in, I wondered how I would ever live without my mom! At times, the fear of losing her was more an enormous burden on me. Growing up, I relied so heavily on her for guidance, that I took our time together for granted in her final months. Not asking enough questions when I had the chance about her family of origin, her teenage and young adult years is the guilt I live with now. Those family recipes I grew up enjoying, I now have no way to record them. I was so focused on living in the moment of her care, that I failed to think about all the things I wanted to know once she was gone. Now I am left with this empty feeling and a whole lot of guilt! How do I forgive myself for not being there like I should have? How am I going to get through life without her? Fear throws you off balance during your care journey, but believing you did all you could, can be very healing when it comes to forgiving yourself. If I forgive myself, then I am admitting that I was at fault for something and I just can’t live with that!

SHAME

When I had conversations with other family members, I felt ashamed that I wanted to put myself first. Some understood the Oxygen Mask theory, while others did not. Here is a quick reminder about the loss of cabin pressure while in the air. The flight attendants make an announcement prior to take off: If we lose cabin pressure, an oxygen mask will drop from the ceiling. Please put your mask on first before placing a mask on your child. This seemed a bit selfish the first time I heard it, but if you think about it, it makes perfect sense. You cannot be of any use to your loved ones, if you are not first ensuring that you are able to breathe. Some family members believe that caregivers have no right to think of themselves first since they chose to care for their loved ones in the first place. They try to push self-care off as being selfish because it makes them feel better about their choice to help or walk away from care. And I already feel the shame of entitlement to have my own life!

ANGER/RESENTMENT

I am so angry at my family for letting me handle all the caregiving duties. While they go off to live their best lives, I am left to clean up the mess, making sure mom/dad gets to doctor appointments, takes medications, gets groceries, and stays safe!

Why can’t I have some time off to live my life too? Resentment took over my emotions when I thought about how much I had given up to care for my parent. I didn’t realize when I agreed to care for them, my entire life would be consumed with their care. Doesn’t anyone see that I am struggling and need a break? Taking out my frustrations on everyone around me was a daily occurrence. Mostly, I am angry with myself for not speaking up to others because I am important too! This situation is my fault for allowing caregiving to consume my life. Can’t someone see how much I am struggling?

When in doubt, Give Yourself GRACE. Ok, how do I do that?

So, what do you do with these feelings? You give yourself grace, of course! It sounds much simpler than it is. Forgive yourself for all the actions, reactions, and emotional outbursts you have while caring for your loved one. And forgiving those around you, will help you begin to heal once your loved one has passed. Give yourself permission to have the feelings you have and forgive yourself for mistakes you have made. Whether it is behavior that hurt someone else or lapses in judgment, no one is truly perfect. So, forgiving oneself is the best way to begin to heal and to move forward with your life!

Grace is our way of forgiving ourselves for being human, fallible, and seemingly imperfect. Who wants to be so perfect that they worry about saying the wrong thing or making the wrong decision? I have enough to worry about during my care journey than to walk on eggshells without enjoying each moment for what it is!

What happens if we can’t forgive ourselves? We step a back from all the chaos, take a breath, and find something to be grateful for no matter how insignificant it may be. If we realize that some things are out of our control, and will take care of themselves, then we can begin the healing process and for just a moment give ourselves grace!