Guilt. Everyone feels it. Everyone talks about it. Everyone tries their best to avoid it by doing the right thing. But, no one ever tells you that there really is no way around it. Sometimes, no matter how many good things you do, you still find something to feel guilty about. This is especially true for caregivers. You could do a million things to care for your loved one, but you will still focus on the one thing you didn’t do. You will still end up feeling guilty about something.
As a part-time caregiver for my mom, I know the pervasiveness of guilt all too well. There are times when I’m sitting on my couch, watching a movie with my husband and cuddling with my dogs, and I am suddenly stricken with pangs of guilt. Out of nowhere I will just start thinking about my parents and berating myself for not being there to help them at that very moment. “What time is it? I wonder what they are doing right now. I wonder how their day was. I can’t believe I didn’t go over there to help them out. I can’t believe I’m sitting here watching a movie right now when who knows what is going on at my parents’ house. It’s not like my dad can ever just sit and watch a movie. I’m so selfish.” These are literally the thoughts that come into my mind out of absolutely nowhere when I’m supposed to be having a relaxing night with my husband.
Caregiver guilt can be so pervasive. It can take over and ruin all aspects of your life. I could spend hours at my parents’ house helping my dad take care of my mom, but I will still feel guilty when I have to leave. Of course, it doesn’t help that something always seems to happen as I’m about to walk out the door. My mom needs to use the bathroom. My mom starts giving my dad a hard time for being out all day (even though he was only out for a couple of hours). My dad seems so completely overwhelmed, as if my help has not even alleviated any of his stress. I will ignore the time on the clock and stay for longer than I had intended. I almost never leave their house when I say I’m going to. I always get back home later than I had planned. But, those pangs of guilt will still find me later that night when I’m sitting on my couch watching a movie. Why?
Personally, I think caregiver guilt has a lot to do with the fact that we can’t fix the situation. I want so badly to do something, anything, to fix my mom’s Alzheimer’s, but the reality is that I just can’t. So instead, I convince myself that if I had just done that one more thing or spent that one more hour at my parents’ house, it would have made a world of difference. Deep down I know that isn’t true. I know that no amount of my help is going to make my mom better. No amount of my help is going to make my dad less overwhelmed or less depressed. There is nothing I can do to make any of this go away, but that doesn’t stop the guilt from consuming me at times. It seems that there is nothing I can do to avoid it. No matter how much I do for my parents, I will inevitably feel guilty about something.
It has taken me quite a while to realize how invasive and destructive guilt can be. It can ruin your life if you allow it. I have recently begun to accept the fact that the guilt will most likely never go away. I don’t think there is anything I can do to avoid it. Instead, I have been trying to find better ways to manage it. Since I know those pangs of guilt will come for me at some point, I am now working on being able to recognize it as soon as possible. When I realize that I have allowed the guilt to invade my thoughts, I have to shut it down immediately. I mean, the second that I start having those guilty feelings, I tell myself to knock it off. “Stop thinking about your parents. Focus on the movie. You’re supposed to be having a relaxing night off with your husband. Don’t ruin it by allowing the guilt to creep in.”
If that doesn’t work and I continue to feel the guilt, I have to remind myself that I will probably always find something to feel guilty about. “You have done a lot to help your parents. It is ridiculous for you to feel guilty about not doing enough. Feeling this way is not going to fix anything. It is only going to make you feel miserable. Even if you spent every second of every day helping your parents, you would still find something to feel guilty about. Stop it!” These are all things that I say to myself when I start feeling guilty about something. I just repeat them over and over again in my head until I have pushed the guilt out of my mind. It’s always a work in progress, but it definitely helps.
If you don’t talk to yourself and coach yourself through these negative thoughts, then who will? The next time you feel the caregiver guilt start to creep in, try talking to yourself, either in your head or out loud if you feel the need. Sometimes I will even look myself in the mirror and talk to myself, out loud, even using my name. Think I’m nuts? Try it!
“(Your name), you have done what you can with what you have right now. You have done enough for today. If you really feel like you haven’t done enough, then just do a little bit more tomorrow. Even if you spent every minute of every day taking care of (your loved one), you would still feel guilty about something. Feeling guilty is not going to change the past or fix the future. It will only make you hate yourself. You have done enough. Let it go.”
Caregiver guilt is always going to be there. It’s always going to find you. I have learned that it’s not about doing every single little thing you possibly can to avoid the guilt because you will likely feel it anyway. You will just drive yourself crazy doing a million things for your loved one and still end up feeling guilty for something. Instead, it’s about learning how to manage the guilt and escape from those pervasive thoughts. Sometimes you have to be your own life coach. You have to find a way to dig yourself out from that pile of guilt because it will bury you alive if you let it. So, don’t let it! You are enough. You have done enough. You deserve some time off. Let it go!
Hi Lauren, You are such a great caregiver; everyone says “take care of yourself first”; they just have no idea. The guilt is right there ready to eat you alive. You are doing a wonderful job. Hugs, Sherron
Thank you, Sherron!
Thank you for sharing! I feel the same way with my parents. My mom has dementia and my dad has a lot of health issues and I’m the only one who helps them out because my brother lives in New Jersey so I never feel like I do enough over there even though I’m there a lot of the day! I just worry about them so much. It is a very hard road ! Thanks for those tips I’m going to try my best ! 😊
You’re welcome! It’s so hard. I worry about my parents all the time. No matter how much I do, it never feels like enough. I’ve been really trying to push those thoughts away because it ends up consuming my whole life. I hope you find a way to manage your guilt, too. We deserve a mental break!
My niece is going through this with her father. I am sharing this blog with her to try and help her. Thank you for writing this. It is probably somewhat cathartic for you, but for other caregivers it can be a sanity saver.
Thank you so much! It is very therapeutic for me! If I can help even one person, it’s worth it. I didn’t have anyone when my mom was diagnosed, so I want to be there for someone else.
Ugh, the guilt is the worst.
It’s so hard!
Lauren, thank you so much for the “Alzheimer’s Daughter” blog. You described better than I have ever heard the emotions and feelings my sweet wife deals with everyday. My mother in law is in the midst of this cruel disease and it is a helpless feeling knowing you can’t do anything to help. If you have any perspectives on a caregiver to the caregiver, I would love to see them. My wife is an only child and she and her father are the caregivers for her mother. I consider myself the caregiver to the caregiver and would like to know what others in this roll do. My wife works so hard in her position then spends as much of her off time with her Mom. I do what I can to try and maintain our home, our kids, and the time we have alone. I still don’t think I am doing enough. I want to say THANK YOU from the bottom of my heart for your willingness to share in real terms what this horrible disease does to not only the loved one with the disease, but also to those who care for them. Your words give my wife comfort and encouragement as she walks through this season of life. Not even a husband who is in the midst of this can understand what this is doing to the caregiver both mentally and physically. Please keep this going and know that while you are there for all of us, we are with you in thought and spirit. Thank you again.
Thank you so much for your kind words! I’m glad my post comforted your wife in some small way. My best advice to care for the caregiver is just to listen. Don’t offer advice or suggestions unless she asks. Just listen and acknowledge how hard it is and how much it sucks. Give her a big hug whenever she walks in the door looking defeated. Doing small unexpected surprises for her is always nice, too. You can’t fix this for her. There is only so much you can do to make her feel better. Just being there for her is enough. Thank you so much for reading and reaching out. I truly appreciate it.
This was great Lauren! I was married for a month and a year, when the courts decided that my parents could no longer live together after 50 plus years, due to my mom’s combative Alzheimers. I had caregivers guilt for sure, my patience was not the best with her, my anger over the disease that took over her and changed her from my sweet and loving mom was the worst, and I cried when she was not with me, and cried constantly at work.
My sister and I struggled with trying to keep our jobs, while keeping her for 2 weeks at a time and having my dad visit with her on the days that we traded up. I was lost and confused and no one to reach out to for answers, until I found an Alzheimer’s support group. My husband and I were the youngest members at our location. This was our saving grace, the knowledge that was shared helped us both out. My guilt poured out onto my husband as he didn’t sign up for this, I felt so bad and at times I neglected him to take care of my mom and then my dad. My husband is a true saint and completely understood, though he has not been through this with his family. His faith is just that strong. We were not able to have kids due to some complications, but we know in our heart that God wanted us to take care of my parents, and I would do it all over again. My mom has been gone for 2 years, but as she always told us, if you can lay your head down at night and know that you did right by God and you feel in your heart that you did the right thing, that was all that is important. Thank you posting the “real” stuff about Alzheimers.
Thank you for sharing. I can’t imagine dealing with all of that, especially so early in your marriage. I’m happy that you found the support you needed before it was too late. Your mom was right. You have to be able to lay your head down and know that you did the right thing. We’ll never be perfect, but we just have to do our best. Thanks for reading.
Thank you for this. I feel the same way. Both my parents have Alzheimer’s. I live half the year in Utah and the other half in Calif. My parents live in Calif. It’s so hard for me to help them being so far away. I feel guilt most of the day everyday. I have a brother who lives a couple blocks away from our parents. He helps some…but he works full-time and goes to school. It’s hard for him to be with our parents all the time. I try to get caregivers to help them but my dad gets angry and makes them leave. He’s getting angry all the time lately. I don’t know what to do.I call them everyday and remind them to take their medications.I order groceries online and have them delivered…but I just can’t stop feeling so bad about not being with them more often to help. I’m working on it like you recommended. I really appreciate the article you wrote. It made me feel better.
Valerie, thank you so much for reading! I’m so sorry that you are going through this with both of your parents. How awful! I can imagine the guilt is more than double. I understand your brother, too, because even if you live close to your parents, it can be hard to care for them while working and living a full life. It’s such a tough situation. I’m glad my article helped! Thank you!
I feel terribly guilty because my mom is in a dementia unit and I don’t feel she is bad yet. Let me back up and explain she started out in assisted living 3 yrs ago because our son’s brain tumor cancer returned. I was 3 hrs away caring for him in the hospital then nursing home where he passed after cancer took him. That was 2 yrs ago and I still can’t move past it. We put him through so much trying to cure him.
My mom is very demanding and gets so agitated and mean, mainly to me. I try to get her out and make the trip every other day and call daily. I tried getting inhome care but she wouldn’t let them in and got confused about her meds so when I couldn’t be there we felt a home was best but she can’t get along with anyone, even herself. She’ll be a spry 99 this month, hates her life but needs the assistance she gets. Shes been in 7 rooms and throws fits till she’s moved. She puts me through the wringer but I feel guilty that she’s there and so unhappy.
I’m so very sorry for the loss of your son. That is so heartbreaking. I’m so sorry you are going through this with your mom. I wish there was an answer to it all. You just have to do what’s best and remember that your mom has lived a full, long life up until this point. You are doing the best you can. Thank you for reading.
Thank you all for the input – am not feeling so alone tonight in my thoughts of guilt, and yes, anger too….we all have the same problem – we’re just human!…..let us not forget that, and just do the very best we can under the circumstances.
You’re so right. We’re all doing the best we can!
You’re insight is so common to all of us who have struggled to care for a victim of this demonic disease. My wife was young when she first manifested symptoms – in her late fifties, and to be honest, I could not have navigated these murky and dangerous waters without support from our kids and friends. I’ve searched for the appropriate metaphor – it’s like peeling an onion one layer at a time – watching your loved one disappear in pieces, but I don’t think I’ve found the right one yet. But I thank you for you blog.
Thank you very much. I’m so sorry about your wife. It’s such a cruel disease.