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The Caregivers' Guilt Dumpster - Open for business
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!
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@schmidty1212 I know that feeling I go twice a week to exercise I am gone 45 minutes but lately he is by the door with his cap on waiting, it breaks my heart when I have to say. I am going on my own. He did come the other day and stayed in the car 25 mins his choice so I guess my time will be the 25 mins inside until it gets to the point I have to take him inside with me. So many times he is ready to leave, one time I couldn’t find him and he was sitting in the car so I just drove around for a while, I try to put my self in the same position. All we can do is try our best.
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5 Reactions@jeanadair123 thank you I appreciate that. I agree, it helps to empathize. I appreciate the supportive words. I think you have a good outlook on things, even down to looking at the 25 min that you do have vs the 20 min you don't have. Whatever helps keep us moving, and its something different for all of us, we all have to find that thing.
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3 Reactions@jbug25
I know a lot of time has passed since the hydration discussion. I have had the same struggle with my father. I discussed it with many docs and nurses and although I received hydration goals (ie how much he should consume to stay hydrated while not overdoing and causing congestive heart failure), all anyone suggested (besides the IV, which he was adverse to and the doc later decided wouldn’t be a good idea for him given some other health issues) was a thermos filled with what he should drink in a day and have him drink it throughout the day. Many reasons why that wouldn’t and didn’t work in his case. I tried putting small bottles of drinks and just enough Keurig coffees in his Keurig drawer all of which added up to the amount he was suppose to have, together, and telling him what was there was his goal. Didn’t work without my constant monitoring and nagging. Not sure why I didn’t think before, and probably others already have, but the perfect solution dawned on me one day . Dad has to take meds about six to seven times a day, throughout the day (and some I can purposely space out to accommodate a more even hydration schedule ). I fill a plastic cup with about five ounces of water and give it to him each time I take him meds. He has committed to drinking it all every time I provide it. If he ever seems like he isn’t going to finish it, I wait to take the cup back, explaining that we are wasting too many by not reusing them more than once (he just throws them away or stacks them in his room).That gives him a minimum of about 30-35 of the 50 or so ounces the doc wants him to have a day, consistently and spread out through the day and evening—which was another facet of this. The rest he can make up with coffees he serves himself through the day from the Keurig, or small juice he has in case he is thirsty other than the med hydrations. It has been such a blessing! This and being more conservative with sodium foods has resulted in some really positive changes. Hope this helps. Of course, my dad needs me to take care of his meds as he can no longer do it—it may be different for you if you aren’t the one dispensing!
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2 ReactionsThanks so much.
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1 ReactionHi Everyone, I'm so happy I've found this DUMP page--(and many others in the Mayo clinic group). My issue is also impatience with my beloved husband's inabilities, "blowing it," "losing my cool, " and so forth. Sometimes I'm scared that "the only thing I have to look forward to" will be my husband's death ... his MCI will only get worse (it's currently undiagnosed; he's dealing with a different diagnosis of prostate cancer). It was scary even writing that sentence. I'm trying to get to a place where I concentrate on enjoying all that is enjoyable in our lives right now and accept that for some unspecified amount of time, this IS and will be my life, caring for him, cooking, cleaning, helping him with his bills and money matters; driving him if he needs to go anywhere. I'm trying to RELAX into this, just accept it. There is much that is beautiful about our life together, he has been the love of my life. I just need to adjust my focus ... but sometimes, yes, I feel I just can't do any more than I'm doing. And know that going forward, more is going to be needed. This forum is already a crutch actually, a place where it's safe to vent on all the unspeakable things I can barely face ... Thanks to all of you for sharing.
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13 Reactions@workwoman Welcome to Mayo Clinic Connect! Some of the other discussions will show you the positive times people have had. Thus, this dumpster page was started: keep the good and bad separated. I’m glad you have joined but, hopefully not just for the bad stuff!
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2 Reactions@workwoman I'm sorry to welcome you to this world, but we're here for you and each other.
I'm amazed to find so many parallels in your situation as me with my husband, his progression, my feelings (up, down, positive, negative, patient, off the charts frustration and finally so much fear and sadness for our future and our relationship, or what's left of it. It's very hard to swallow, I get it!
Peace to you.
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9 Reactions@workwoman
It’s a journey that we can only take one day at a time. ..every day is a new day. I try to put my mistakes in care giving from the day before behind me and focus on how I can do better with each new day. My husband of nearly 45 years can’t help it that he has Alzheimer’s. He has always been there for me whatever my need, I will always be here for him, on the good days and on the not so good days (which are starting to outnumber the good ones). It is getting harder, but I am also getting tougher. I search constantly for ways to make his life better. Don’t be so hard on yourself. Just do the best you can. Ask for help when you need it. Read through all the posts and comments here on Mayo Connect. You will quickly see you are not alone. We are all here looking for suggestions in caring for our loved ones and helpful advise on taking care of ourselves so we can be the best care giver that we can be.
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11 ReactionsI share what you described. One thing that seems to be helpful to me is saying to myself “it’s just life”.
For some reason reiterating that phrase to myself helps me focus when my world seems overwhelming.
I’m always open for other healthy ways to handle feeling overwhelmed too.
I wish you well and keep up the good work !
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7 Reactions