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.

Babbsjoy - you were reading my mind!
I, too get irritated when I’ve really done my best, not talked harshly, tried to keep a calm look on my face, after I’ve been interrupted for the umpteenth time for another request by my husband who has LBD. Because he is no longer able to operate a TV remote, a cell phone, computer nor read, he is bored, frustrated and lonely. The second issue is that he has microscopic colitis that comes and goes at will. Not only does he have gut issues from the dementia sometimes, but the colitis on its own is dreadful, so we are pretty much stuck at home. It is hard to be everything they need. Actually it’s REALLY hard. And, no one who hasn’t been down this road really knows what it’s like. I don’t even share with friends / family everything - only here. I’m so grateful for the fellow who started this - and I’m really so sad that we have to have it and need it to save some sanity. Peace, Cheryl

REPLY
Profile picture for lcl44 @lcl44

@jillsy Wow, we have quite a bit in common! My husband’s an engineer who still has an amazing ability to think through and solve “fix-it” problems but is getting more forgetful of things and slower at solving puzzles, and of course if physically not able to do the things that he once did, and that frustrates the heck out of him. Re: procrastination we have this saying: “Just because I have not yet done that thing I said I would there’s no need to remind me every six months.”
We have a Tennis Channel subscription which after obligatory evening news, Jeopardy and Wheel of Fortune rounds our our evening TV watching. Live tennis going on somewhere in the world all the time.
Hang in there!

Jump to this post

@lcl44 What a coincidence - my husband is also an engineer - ex-college professor. I wonder if they're more apt to get dementia?

REPLY
Profile picture for jillsy @jillsy

@lcl44 What a coincidence - my husband is also an engineer - ex-college professor. I wonder if they're more apt to get dementia?

Jump to this post

@jillsy
Interesting thought but it looks like the opposite is true.
https://www.alz.org/news/2021/higher-ed-lower-risk
However, I found this online …
Some research indicates that for those who do develop dementia, higher education can lead to a more rapid decline after diagnosis because they have accumulated more pathology before symptoms become apparent. However, this does not mean they are more likely to get the disease.

REPLY
Profile picture for brynmick @brynmick

My wife of 53 years has dementia, diagnosed 3 years ago. Mostly I can keep my voice gentle and get her to do what she needs to do. But when she doesn't seem able to do something then I sometimes feel my voice rising and getting more urgent. Then afterwards I feel guilty for putting her under pressure like that. Fortunately she doesn't remember these episodes. But I do.

Jump to this post

@brynmick ya know we are so hard on ourselves. You sound like a loving kind person. If you happen to get frustrated or impatient occasionally I think you should cut your self some slack. If you were a screaming lunatic or a raving maniac that would be different. Be kind to yourself. I’m trying to do the same, so I know it’s hard.
You’re doing a really really important thing in life, and it sounds like you’re doing a really good job. God bless.

REPLY

Just what I needed to read today. Or any day when yet another ability suddenly leaves my husband’s repertoire.
First the usual internal cranky feelings cascaded, and I got him “rebooted.” Then he went outside to walk around for a bit.
It’s now 10:17am and I’m enjoying a breakfast of chips and salsa and a little quiet time.
None of this is normal (especially my breakfast) but I’m learning to roll with it.

REPLY
Please sign in or register to post a reply.