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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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@tavi we haven't heard from you for a while. How are you?
Thanks for checking - I appreciate it. I've been reading and learning from everyone posting to this site - thank you all so very much. I hope to be able to return your gifts in the future! I've been quiet in order to essentially reserve energy and focus -- I'm working pretty hard to figure out the best path forward for my husband and me -- I want very much to try to provide him the comfort of care in our home. However, he can no longer understand that I cannot do everything by myself - especially since he is not aware that he awakens 5 or 6 times every night and needs to completely change his clothes due to sweating. His daily behavior is also changing -- he's become very dependent, needing to know where I am and what I'm doing at all times and he has started to have serious confusion / agitation late in the afternoon. I may be one of the textbook cases of facing caregiver exhaustion and waiting too long to research, find and introduce the breadth of external help that is required for care at home.... I've started working with our local Home Health Services group -- the visiting nurse came for the first time last week and suggested some additional medications that might help with the agitation.... I am also planning to add more hours to the companion care we currently have. Finding caregivers who understand and can manage the full range of behaviors is challenging. Again, thanks for checking - I have not talked about "guilt" in this post so I will end with a comment. It is critical for my sanity to remember that my best effort today is sufficient -- whatever combination of care I am able to establish, it will not stop this awful disease but it will bring comfort in the moment to both my husband and to me.
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3 ReactionsHi @tavi Wishing you well on this stage of your caregiving journey. None of them are easy, but times of patient change are especially challenging for sure. My wife became very dependent on me, too. I think in certain people at certain times it is 'normal' for them to seek some level of comfort, especially during those times of change. So they look to their greatest source of that and it their primary caregiver. My wife used to get agitated when I would be out of her sight to go to the bathroom 🙂
During the nights, if it wasn't medication related, I found I had to dial back my care. I began slowly increasing the intervals between changes, etc., adding a layer of towels and pads on the bed above the sheet, etc. to 'slow down' the process in the night.
Sundowning is a very common symptom and both my wife and mother in law exhibited it. Our doctor began adjusting the times of dosages to combat that. Didn't relieve it all, but did help.
Peace and strength!
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2 ReactionsProviding care for our family members who are struggling is essential. Taking care of yourself is important as well. I praise your choice of getting additional help for your husband. You need time for yourself, if anything, to just take a nap without interruption. You can't take the chance of you becoming ill yourself. Do you have family or friends someone from church that could help out at times? Someone your husband knows that would be willing to spend an hour or so with him while you run errands or go out for lunch. Do not feel guilty for doing something for yourself. Even see if someone could bring in a meal or two so you won't have to cook. If someone asks how they could help, ask them to provide a meal now and then.
You are on the right track in getting extra help. Your love and support for him is wonderful.
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