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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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I have seen the progression of this disease on my spouse. The delusions become more common along with the wandering. My solution was to partner with God and accept it was part of his plan for her. My shoulders are only so broad to handle the pressure and it helps to have the burden shared.
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5 ReactionsWhen my wife came down with ALS, we didn't know what was going on. As we went to Mayo for diagnosis and it took almost a year to find out, I realized I was not strong enough or smart enough to be her caregiver. Our number two daughter took on the task. She amazed me, she still does. Now she thinks she is my care giver.
But she recently got divorced (Today!) and will be looking for a job. I don't drive or own a car any more. I don't have a bicycle either and I live in the country--very rural. We will see what happens.
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4 Reactions@emteenest2 @jeanadair123
I so get you both about not having anything to talk with friends about/life passing by! I take care of my dad and it’s pretty isolating. Most of my close friends have not had this experience and cannot relate. And I don’t want to be the Debby downer person either. But it’s best if I just keep the conversation going about them and their lives. Most are traveling and enjoying grandkids, etc—so it’s easy. My closest friend and her husband just moved to be near their first grandkids. When I expressed sadness that she would be gone, her response was “Well, all we do is talk on the phone now, so nothing will really have changed, right?” (It’s been tough to leave my dad home alone.). Ouch. Life as I knew it before this care journey began almost six years ago, is not there waiting for me……
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2 Reactions@jeanadair123 yes it would be nice. It would force me to put on some makeup (lol)
I am sorry to hear about the bruising from restraints. My dad had Alzheimers and thankfully did not need them. My husband has bruising from lots of infusions and blood work. The nurse recommended Arnicare cream. We got it on Amazon and it is amazing. Do try it. I hope you are doing ok.
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1 Reaction@babbsjoy i agree. Life “before” will not come back. At least not as we knew it. It will be different, but I do so hope we can make it fulfilling and filled with some amounts of happiness and health.
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2 Reactions@emteenest2
I have faith that that will be so!!!!
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2 Reactions@babbsjoy I actually found someone who I could trust that could come and be with my husband for a few hours. We will try for a couple of hours next week I’m hoping all goes well because my husband just wants to be with me all the time. Although now he on an additional new medication for his cancer and if I don’t watch what I say he gets irritated and can be nasty but he forgets quickly, the only problem is that I don’t always forget as quick,this is a man that has never uttered a mean word to me in 45 years. I feel like I am dying a little everyday and the only enjoyment I get is buying something nice for the house. How sad is that? It’s been 7 years for me, I also wonder what the future holds? 😍
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1 Reaction@emteenest2 Thank you for the info. Every little helps 😁
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2 Reactions@jeanadair123
I am so glad that you found someone to help and give you a break! Seven years is a long time. I’ll be praying it goes well. I am so sorry that your husband has spoken hurtfully to you. Such a change in nature has to be painful for you. I know how hard it is to forget that hurt. I have been reading some about trying to see our care recipients in a new perspective not subject to our expectations that are based on our past relationships, expectations that they cannot meet in their new reality. I have a hard time achieving it myself. Praying a lot about it. But please remember you always deserve respect and safety!
(And I totally get the shopping for the house outlet. My current escape is streaming FBI International episodes and FBI. 🤣)