The Caregivers' Guilt Dumpster - Open for business

Posted by Scott, Volunteer Mentor @IndianaScott, Sep 4, 2016

I titled this discussion with tongue-in-cheek, but only part way. As this caregivers discussion group has begun I have been struck by the number of times the word 'guilt' is used by us caregivers. It is unfortunate, understandable, unnecessary, and, to me, more often than not, unwarranted!

I believe 99% of our guilt is so unwarranted we caregivers need a place to get rid of it. This gave me an idea....

So here is our Caregivers' Guilt Dumpster! Feel free to check in, and make a deposit anytime you want! The dumpster is big, it has no weight limit, 24/7/365 availability (since we as caregivers often live on that same 24/7/365 schedule), no fees, and the lid is now open! 🙂

I'll start.

More often than not, I believe a person is thrust into a caregiving role. It seems to just happen and we answer the call for some variety of reasons. Those who adopt the nickname of 'caregiver' obviously have accepted our call.

As we each know, caregiving comes with no employee handbook, no job description, no timesheet to clock in and out, and an awfully slim benefits package. I likened my initial feelings as a caregiver to those I had the first time I jumped into the deep end of a swimming pool. In over my head and trying my best to just not drown.

In the 14 years I was my wife's primary caregiver I had loads and loads of feelings of guilt. Heck, sometimes I would feel guilt before I even did something because I was unsure of my ability to do what she needed. But, thankfully, we always seemed to manage. Not always the smoothest of managing, but we did get to say 'mission accomplished'.

Yes, the 'mission' at hand would get accomplished and sometimes I would be repaid with a smile and sometimes with a snarl. While the 'mission' got done -- however my feelings of guilt often did not end. To fight the guilt, I finally began to use a mantra/image to help me through the guilt. Before I would start, I'd close my eyes for a brief moment. When I would reopen them I would say to myself "Well, Scott, no one appeared in this room to take my place for this task, so all I can do is give it my best."

This did help. I still had some, but at least less, of the guilt. My reality now is too much of those feelings of guilt still nag at me and hang on my shoulders like a weight. So I leave it here. Now. Today. In the guilt dumpster!

Feel free to have at it!

Peace and strength to all caregivers!

Interested in more discussions like this? Go to the Caregivers Support Group.

Profile picture for rasasarabis @rasasarabis

I have been the only caregiver for my 86 yr old mother for the past year. Before moving in with us she needed very little assist...then she got sick when her chronic hyponatremia really bottomed out and her CHF exacerbated. Not to mention the AAA that surgical treatment for is not an option. We decided to bring in Hospice as she required so much equipment, medicine, and thought it would give me a break when they came. Now she is actually transitioning in the dying process and requires total care. Now I'm not only exhausted, but feel so bad for all the time I was tired and crabby when she could do but wouldn't. I'm doing the best I can, but still feel like I should be doing more. I have been unable to work since last October as she needed someone here 24/7. I cry in the shower, yell outside ( thankfully in the country ) and try to put on the brave face the rest of the time. My husband works out of town so it's me, her, 3 dogs, and a house with 10 acres to care for.
Thanks for a place to vent

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@rasasarabis Your plate is so very full and likely somewhat lonely, too. So difficult to watch our loved ones fade away and really struggle as their health deteriorates. My husband is 85, dementia and CHF that is rapidly progressing. I, too, feel so much guilt and look back on the last dozen or so years and think that wasn't so bad. Even then though I was fustrated and complaining the entire time. Forgive yourself, accpt we cannot change the past and then move on. You are there for her now when she needs you the most.

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Profile picture for jenniferkr @jenniferkr

@rasasarabis Your plate is so very full and likely somewhat lonely, too. So difficult to watch our loved ones fade away and really struggle as their health deteriorates. My husband is 85, dementia and CHF that is rapidly progressing. I, too, feel so much guilt and look back on the last dozen or so years and think that wasn't so bad. Even then though I was fustrated and complaining the entire time. Forgive yourself, accpt we cannot change the past and then move on. You are there for her now when she needs you the most.

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@jenniferkr thank you. I've always wanted the best for her. To see her get some resemblance of her independence back. Now...no chance of that. Roles really to switch as our parents age.

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Profile picture for loopycann @loopycann

@colleenyoung Yes. A great idea. I carry guilt from caring for my mom & sister. My mom fell & broke her hip, @ 91, on my watch. Every morning , about 6 am ,i got up to make coffee & start the day. As i came downstairs , i passed her room & knowing she was very light sleeper,i would say quietly, “its just me. Its very early. Dont get up yet. Ill be back about 40 minutes”. It wouldnt wake her at the volume i was speaking,so when she answered”okay” i knew she was already waking up. After i came back down to start the day,i found her on the floor! She had fell going to the rest room & broke her hip badly. She wasnt crying or hollering. She was very quiet & unnaturally unconcerned. She got an operation and all seemed well,but she wasnt hersef again. Its my belief she had a stroke & fell. She had,had a stoke a couple of years earlier & we recognized it & rushed her to the hospital. I dont think the doctors caught it, this trip. She was before the fall, able to converse, watch tv ,walk with no issues , & was nice to be around,but now after, she acted like she couldnt understand people, didn't talk much, couldnt folliw directions to do the nessasary things to heal from such an awful break. ,etc. She eventually passed 1 year later, in a residential hospital. She was 92. My guilt is great just because I was powerless to help my mom. I feel I should have gone in at 6am & made sure she didnt fall. I tell myself maybe then she’d still be with us. I go around & around in my head of what i could have done differently. Im crying just typing this.The guilt is real and it never lets up. Im caring now for my sister,who is 72. She has dementia so bad she sputters instead of speaking because she cannot find her words. She slams things when shes mad & sometimes hits me with an object if she gets frustrated. I have severe rheumatoid arthritis,my hands are crippled now. She gets agitated & frustrated if i cannot show her how things work. Occasionally,when she strikes me with something or pounds on the dashboard when im taking her somewhere in the car, I get irritated & raise my voice to her. She will pout,then apologize. I feel terrible i hollered. I understand and follow the fact that she means none of it. She is interacting the only way she can. I love my mother & my sister,very much. Im so afraid ill lose her. The Guilt is real.

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@loopycann, I wish I could lift that guilt from your shoulders. You're carrying enough weight. We make the decisions with the information, energy and compassion we have at our disposal at the time. Of course, you could've gone into your mom's room that morning. But at the time, you were acting according to the information you had and with care. Your mom is a light sleeper so you wanted to signal to her that you were there, but also give her the time and space to either continue to sleep or slowly wake up. That was kind and caring.

The next sequence of events were not in your control or the cause of any action you did or didn't do. Your mom wouldn't want you to think that way. She wants you to be kind to yourself. ❤️

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First up, I love this Guilt Dumpster! And I chuckle this morning, because I'm anxious to post how I'm feeling. Okay, I feel guilt over not feeling guilty, over my husband's care. Maybe it's because before my mother died, I should have left my job (Aha, there's the culprit of my targeted guilt) and cared for her as only child. I did everything I could remotely, I set up elder care, etc., because I was in Boston, she lived in Virginia and my husband working in New Jersey. What I couldn't provide was what she needed most: the ongoing emotional support from me just being there, to touch, feel, and take her daily fears away. So now, I have an opportunity for a do over, with my husband's care. I didn't sign up for his MCI or to be a caregiver. Scott is right there is no job description. But what I do know; I'm here, with that touch, feel and helping to dispel any fear that may come his way. While he's still functioning and knows me, and through whatever comes our way, I'm here to make his life better, and in doing so, mine too.
Thank you, Guilt Dumpster! Best, Karla

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Profile picture for Colleen Young, Connect Director @colleenyoung

@loopycann, I wish I could lift that guilt from your shoulders. You're carrying enough weight. We make the decisions with the information, energy and compassion we have at our disposal at the time. Of course, you could've gone into your mom's room that morning. But at the time, you were acting according to the information you had and with care. Your mom is a light sleeper so you wanted to signal to her that you were there, but also give her the time and space to either continue to sleep or slowly wake up. That was kind and caring.

The next sequence of events were not in your control or the cause of any action you did or didn't do. Your mom wouldn't want you to think that way. She wants you to be kind to yourself. ❤️

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@colleenyoung
Well said and I second it!!!!

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