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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’m back. Three bad days, I need counseling but since looking I have only found video counseling but that would be impossible. Most are marriage counselors/ addiction etc I want someone to help me cope not to just listen to my issues. I am tired, exhausted and feel like I am just a person to do the chores and cook, although my husband always appreciates what I do for him. He won’t wear his hearing aids he said he doesn’t have a problem so I find what’s the point in talking and I can’t keep shouting all the time. One wonders what life has to offer now, I’m not depressed just tired all the time which makes it harder to move ahead during the day. My girlfriends mother is 99 and she said the same thing no one prepares you for this. Also whenever I go out with my friend for coffee he always gets ready to go when I explain where I am going his face drops, it’s so sad.. he also wants to go out everyday but grocery shopping appointments etc seem enough for me right now and even that is a chore. Okay thanks
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4 ReactionsWhen we were no longer capable of taking care of my MIL (and she had Alzheimer's), she had to go to a nursing home. Since I had more job flexibility and we lived close to the nursing home, I would take her out to lunch 2-3 days a week, After lunch she would always ask to go home and it hurt when I had to explain that she could not go home because we couldn't provide the 24 hour medical care. Good luck and God speed on your journey
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2 ReactionsScott, thank you for this dumpster! it is sorely needed by a lot of caregivers.
my guilt? not sure where I start. a couple. of months ago, I had to call my son for a ride to the emergency room because I was having trouble breathing. Needless to say the hospital was excellent because they got me breathing again and my son stayed with my wife (who has stage 3 dementia) for the two nights I was in the hospital. However, I received at least a dozen calls in the hospital from my wife telling me "I know you are really enjoying yourself with whoever you're with but I don't ever want you home again". My son cooked for her, tried to calm her down and made sure she was taking her medication but he was exhausted when I got home. The hospital did not want to release me and I had to sign myself out against the doctor's order because I had to get back to my wife. Oh, and when I got home, my wife thought I was only outside shoveling, She didn't realize I was gone for 3 days and she didn't realize my son had stayed with her those days.
My guilt? for putting my son out and having him realize how bad a condition his mother is with this disease and leaving my partner of over 55 years alone for a few days. Thanks again Scott
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6 ReactionsFeeling a lot of guilt these past few days. DH has been in hospital for 11 days. Pneumonia (resolved) heart issues (still trying to stabilize) and hospital delirium. I sit at home, alone at night and look around at all our beautiful furnishings. Then, I think of him in a small hospital room, next comes a small SNF room, one day perhaps a small MC room. He worked so hard to give us a comfortable life with nice things, it breaks my heart to imagine he may not always get to enjoy them. I felt such guilt eating a home cooked meal (my first since he was admitted) and knowing he can't swallow without choking so he's getting nothing by mouth. I can't enjoy even simple pleasures because of the deep guilt I feel.
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6 ReactionsI was talking to my sister-in-law a week ago. We were talking about her sister, my spouse. At one point I said, "In my life my grandmother died in one day from a heart attack and I went through that grief and it is what we are use to. My father died of lung cancer and was only sick for a week. My mother died on the day of her surgery and then I had the responsibility of settling her estate and handled the grief and missed her terribly. But Alzheimer's is not the same, its a reverse grief process of dealing with someone you love." There are moments they are there, but many when they are not. It is not what we are use to in our life.
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3 ReactionsNot sure of all your story. But my heart goes out to you. I know the uncertainty and black hole you must be feeling. Well, i dont know your particulars but i can relate as to what i have been through. We dont KNOW unless we have been in those same shoes but i can relate to what you are going through to a certain extent. PAIN HURTS. I know the feeling of trying to enjoy a once happy meal that you and loved one shared to now eating alone. I know the feeling of looking around the house and reminicing happy times and feeling serile like you are suddendly disconnected and it all seems like a dream. It is numbing. I try to pull from my faith when that feeling of solitude hits me. That is all i can do is try to be still and shut out negative thoughts.
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4 ReactionsI totally get it - it’s SO hard to always try to remain “ pleasant” —— we are all human and doing our best , and you sound like you love your dad very much
and doing a great job of caregiving - peace to you !
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5 ReactionsYou have no reason to feel ANY guilt (although, of course, feelings have a mind of their own and aren't easy to control). The reasons you should NOT feel guilty are:
1. Your son should know his mother's condition and he should know what you have to go through every day to care for her. He's your child, but he's not a child. Unless he has some serious health issues of his own (since you didn't mention any, I'm assuming he doesn't), he needs to know the situation. Since he stepped up and did what needed to be done, you can be proud of him.
2. You have no reason to feel guilty about leaving your wife alone for a few days either. Yes, she apparently had moments of feeling neglected and suspicious of where you were, but the little piece of silver lining of her condition is that she doesn't remember that. Her angst was short-lived, since now she doesn't even realize you were gone.
3. But the main reason you shouldn't feel guilty is that you needed to take care of yourself—not only for yourself, but for your wife and your son. It worries me that you signed yourself out against medical advice. Who will take care of your wife if you're dead or unable to? How much will your son beat himself up for not helping more? Please, please, PLEASE, do not neglect your own health for them and for yourself. And ask for help with your caregiving. Paid help, if you can afford it, or volunteer help from your son and other relatives if you can't.
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8 ReactionsBclane thank you for your kind comments. They are much appreciated.
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2 ReactionsCan someone tell me how to change the setting so that I can read the latest postings.
When I open the page, I have to scroll through all the postings beginning in 2016.
I’m positive it’s user error on my part! Thank you.