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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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@grandmateri5, being a caregiver serves many challenges. Being a divided caregiver forces difficult choices. I'm sure it was really hard to be separated from your mom when she was admitted to hospice while you were supporting your son through his life saving transplant.
I hope you were able to have the confidence that your mother was well cared for by the hospice. Even without knowing you and your family, I'm willling to bet your mom would have supported you being where you needed to be at that moment in time -- with your son.
How is your son doing now? Have you had time to sit with the loss of your mom?
@soul
Really important to remind ourselves that the literature says that caregivers over age 70 face a 63% higher mortality risk of dying before the people they are caring for, compared to non-caregivers. And those under 70 are also at risk--between 18 and 40%. Self-care is not selfish, and feelings of guilt about exercising it are not uncommon. For several years--until my own caregiving responsibilities became more profound--I raised money at our local Area Agency on Aging. I learned first-hand of the amazing list of services this nation-wide organization can provide for caregivers. Please, please take advantage of them. Far too often, AAA's are invisible resources within a community, so you may need to do a bit of research to find your local branch. But I promise, it is worth the effort. Bette
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1 Reaction@smrw2026, it's nice to know that reading the posts of others has helped with putting feelings into perspective. I look forward to your posts when you're ready or want to share. In the meantime, sending you a virtual hello and thinking of you.
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1 ReactionIt’s so hard living though someone with dementia, I hate myself when I get angry and try and remember that he would take care of me and how many great years we had before this took over our lives? He is on Lupron also for his prostrate cancer 3rd recurrence, the Lupron will hopefully stop the progression but the cancer remains. I haven’t mentioned this to him what’s the point? His doctor said a year ago when he was diagnosed that his survival rate would be 1-3 years we have just passed a year but with the dementia which will come first? That sounds awful I know. Plus he also had 3 fractured disc in his back in a year. I feel my life is passing me by and know that I should do more to entertain him but I am so tired and find trips to the stores are enough? how do you tell a friend that you are living from day to day no one really understands. Enough whining for today, thanks for listening.
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6 ReactionsWhat a day we have had the worst ever…. My husband was not feeling well and said he felt pressure on his chest I thought it better that we check it out at ER. We were given a room while they did blood work and a CT,
And the doctor said he would recommend a stress test because an echo scan which he recently had does it always show everything. My husband kept saying I don’t want to stay can’t they order the test for tomorrow and I can go home with you, it was the worse feeling ever but not realizing the worse was to come. I went with him to his room and got him settled but he pulled off his blood pressure, monitor oxygen etc and tried to rip out his IV.
I let for an hour for dinner and it appeared all seemed okay that they were handling these issues. Upon my return I find they have him restrained to say he was not happy was an underestimate he was furious. He somehow managed to remove the restraints which took three nurses to get them back on and my husband swearing and pleading please don’t put them on me. It was the worse he pleaded with me and asked me to remove them when I said I couldn’t he said wait until you need something, while I was there he managed to get them off 2 more times so I asked the nurses give they could give him some thing to relax and sleep which they did. Meanwhile he is still pleading with me and I said I was going to go home as nothing I could do helped .His reply was if you leave don’t be there when I come home I don’t want to see you again. I wish I had never taken him there and I am scared of the repercussions of him being restrained and if it will make his dementia worse. Right now I hate myself how could I have left him he would never have done that to me……😩😩
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6 Reactions@bettes Iam 66 soon and been a carer of family for decades, still caring for a daughter with issues.
@jeanadair123 Sometimes it is difficult to know the right course of action to take for our loved ones. We believe the health care providers know best, however in the case of a patient with dementia, the physician should have known to handle this situation differently. Unless your husband’s life had been at risk, he should have let him go home and return the next day for the test. Everything your husband endured while spending the night there couldn’t have been good for him mentally or physically.
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4 Reactions@labrown
Luckily when I went this morning he seemed okay, no restraints but I called before I went. The doctor who was going to schedule the Lexascan came to talk to me before he did it, he was super nice and suggested that maybe it wasn’t such a good idea to do it with his dementia and he wanted to know I felt about it, I was totally on board since it was a stress test. He took me to a computer and went over all his tests with me. Super super nice. He said that he could go home then. But I have to say his wrists are black and blue from the restraints, I have not mentioned this to him since he is just happy to be home and is currently taking a nap in his recliner outside, it is 75. Lesson learned this will never happen again. I told my girlfriend and she said in the past she was told by some facilities that they do not use restraints that they are against the law. This I shall check into. Thanks for replying.
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4 Reactions@jeanadair123 oh my goodness- you poor girl! You cannot feel guilty that you went to have dinner! Theres no way you couldve known he would have problems— this disease is so awful— its not your fault— its not his— its the disease. Im sorry for you— because we never want our husbands to become upset like that, or to be restrained— but the dementia caused it, not you.
Dont hate yourself— you are a good wife- a good caretaker— and you are in unchartered waters whether you want to be or not…be kinder to yourself…it's going to be ok… this too shall pass. You are not alone.
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6 Reactions@rebeccagrover
Thank you for your kind words.
It was certainly an awakening. Somehow I feel I am able to accept this a lot more. Knowing he is happy and that’s all that counts. 😍
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5 Reactions