I feel guilty a lot. I mean a lot. But that’s okay. Its okay for me to feel whatever I am feeling, heck, I am a caregiver for my husband who had a massive stroke and suffers with severe aphasia and cognitive disabilities. I work. I am trying to make our fixer upper of a house more livable. I think that makes me a super hero and grants more room for more feelings, making mistakes, and sometimes just needing to walk away and take a moment for myself to decompress.
Caregiver guilt is a common feeling whether that often stems from feelings of inadequacy, resentment or fatigue. It often stems from the immense responsibility and stress of being a caregiver and the feeling that one isn’t doing enough, even when making significant efforts. Feelings of guilt increases when we, as caregivers, try to compensate by trying to take self-care time for ourselves. This guilt can increasingly negatively impact a caregiver’s mental and physical health, leading to stress, burnout, and even physical strain in a viscous self-feeding cycle.
What causes caregiver guilt?
Feeling overwhelmed: Caregiving can be demanding, both physically and emotionally, leading to feelings of being overwhelmed and unable to meet all the needs. I have so much that I am working on that I know I am not doing everything 100% I am always overwhelmed and I just cant keep up. These feeling are often exacerbated by the fact that I have days where I cant move and barely accomplish anything because that is what my body needs me to do. On those days it just has to be enough to cook my 3 meals, clean the kitchen, take care of the dogs, and maybe do a laundry or clean out the fridge!
Unrealistic expectations: Society and even the caregiver themselves may have unrealistic expectations about the level of care they should be providing, leading to self-criticism. When is enough enough? I often feel guilty because I know I should be helping Glenn with physical and speech therapy but I have just gotten to the point where I am doing to many other things and just cant find the time. I do have him set up to do therapy at the YMCA 2 times a week and he gets to the YMCA almost everyday and enjoys his time there so for me at this point in time this is good enough. Glenn also goes to speech therapy once a week and he has a few speech therapy apps that he plays with every day. So when I start to feel guilty I tell myself that I have set Glenn up to do the best he can do for himself. If I can find time I will work with him, but if not at least he has a pretty good foundation that I created for him.
Competing responsibilities: Caregivers often juggle work, family, and personal health alongside caregiving duties, which can create a sense of being stretched thin. There is so much I want to accomplish for myself, but I have to take care of Glenn and take care of the house and take care of the dogs and mow the lawn and do the grocery shopping and and and. It never ends, but I still want things for me. I have decided that I am going to do some of the things I have been wanting to do and work through my guilt. I have no choice and neither do you.
Difficult decisions: Making tough decisions about care, for example, deciding to place a loved one in assisted living, can trigger feelings of guilt and regret. I am just getting to the point where I wonder if placing Glenn somewhere isn’t the best for everyone. When I think about it it creates such enormous guilt. I am not any where near making a decision and I luckily don’t have to be.
Unresolved issues: Past relationship issues with the person being cared for can also contribute to feelings of guilt. Glenn and I had a very contentious marriage exacerbated by running a restaurant together. We were just getting to a point where we wanted to work on the marriage and try to let all past grievances go….. ……and then he had a massive stroke. There are many days I think about why I fought so hard, or why he had to drink so much, or why did we never see eye to eye. Those thoughts absolutely suck. All I can do is tell myself it was what it was then and it is what is now and force myself to forgive the past and the present and keep moving forward.
Feeling undervalued: Caregivers may feel unappreciated by the person they are caring for, or by other family members, leading to feelings of resentment and inadequacy. Glenn has absolutely no clue how much I do. When I try to point it out he will belittle me and mock me. Yes it hurts, but then I remind myself that he is brain damaged and I just leave it at that and move on. I don’t know if he cant see it or if he doesn’t want to see it. I have no idea what is going on “up there” and frankly it doesn’t matter. As long as I do what I need to do and I do it with earnestness then I am okay. Sometimes family will think you aren’t doing enough, all I can say is tell them to come help! If they don’t then tell them to mind their business. My family thinks I do too much so I am on the opposite end of the spectrum, which is a little confusing.
Feeling stuck: Some caregivers feel as if caregiving has taken over their lives, leaving little time or energy for their own needs. They often feel guilty that they are not living up to their ideals about their own lives and spend countless hours wondering if they are doing the right thing, which, often leads to feeling guilty for even entertaining the idea.
How to cope with caregiver guilt
Acknowledge and validate your feelings: Recognize that your feelings are normal and that it’s okay to feel stressed and overwhelmed. What ever you feel you are allowed, so go ahead and feel it. Heck go outside in a rainstorm and scream about it!
Practice self-compassion: Be kind to yourself and avoid harsh self-criticism. Acknowledge your efforts and the challenges you face. Be realistic in your expectations and remember that our society is not set up in any way to help caregivers. It is really just you against the world so take time to recharge so that you can keep up the good fight.
Seek support: Talk to friends, family, or a therapist about your feelings. Consider joining a caregiver support group. Even an online or Facebook support group can do wonders.
Set boundaries: Learn to say no to extra demands and prioritize your own needs. Delegate tasks and ask for help when you need it. Personally learning to say no and not feeling guilty about it is probably one of the most difficult things I have been learning to do.
Take breaks: Make time for yourself to rest and recharge. Engage in activities that you enjoy. Obviously the more time you can spend doing this the better you will feel, but even 15 minutes will help. When Glenn is settled in a task I will often attempt to conquer a personal goal even if something else isn’t going to get done. I consider being able to do this an art. Give it a try and see how you feel.
Focus on the positives: Acknowledge the positive impact you’re making on your loved one’s life and remember the reasons why you are caregiving. This is the point I usually remind myself that no “life is not a wish-granting factory” and that I need to find glimmers of hope and joy in the little things every day.
Caregiver guilt is a common and often difficult experience. By recognizing and validating your feelings, practicing self-care, setting boundaries, and if need be, seeking support,you can learn to manage your guilt and prioritize your well-being as a caregiver.
