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The Caregivers' Guilt Dumpster - Open for business

Posted by Scott, Volunteer Mentor @IndianaScott, Sep 4, 2016

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!

Interested in more discussions like this? Go to the Caregivers Support Group.

Profile picture for dianaml
dianaml | @dianaml | 4 days ago
In reply to @cath50 "@dianaml I am relatively new at caregiving, 3 yrs in. I totally relate to your feelings..." + (show)
Profile picture for cath50 @cath50

@dianaml
I am relatively new at caregiving, 3 yrs in. I totally relate to your feelings of frustration, anger not at him, but of our situation. My husband has very severe back pain as well as Parkinson’s. Cognitive issues are appearing every day now. He’s just so needy and I work so hard to keep him comfortable, nutrition, med schedules, and doing the activities he enjoys. He is processing things very slowly and I know I need to give him more time to respond and initiate movement. I’m trying to give myself some forgiveness in my frustration about trying to have a normal life. I know he didn’t sign up for this and I didn’t either so I need help in accepting how this life is going to move forward without resentment and loss of hope.

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@cath50
Yes I understand...it's tough. He forgets so many recent conversations. Cannot seem to keep dates and times straight. Hard to make plans. If I try to correct, which all the literature says never do, he accuses me of having to always be right. I feel like I just can't win.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | 3 days ago
In reply to @cath50 "@dianaml I am relatively new at caregiving, 3 yrs in. I totally relate to your feelings..." + (show)
Profile picture for cath50 @cath50

@dianaml
I am relatively new at caregiving, 3 yrs in. I totally relate to your feelings of frustration, anger not at him, but of our situation. My husband has very severe back pain as well as Parkinson’s. Cognitive issues are appearing every day now. He’s just so needy and I work so hard to keep him comfortable, nutrition, med schedules, and doing the activities he enjoys. He is processing things very slowly and I know I need to give him more time to respond and initiate movement. I’m trying to give myself some forgiveness in my frustration about trying to have a normal life. I know he didn’t sign up for this and I didn’t either so I need help in accepting how this life is going to move forward without resentment and loss of hope.

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@cath50 Welcome to Mayo Clinic Connect! I know that you been on the sidelines for about 1 years, but today you really joined in because you wrote a message of your own! Have you been able to learn from the other members in this discussion group? I hope so and i hope that you’ll continue with this discussion!

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dederickve | @dederickve | 3 days ago
In reply to @emteenest2 "@jeanadair123 there are more And more days I feel as you do. Supermarkets are about all..." + (show)
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@jeanadair123 there are more
And more days I feel as you do. Supermarkets are about all i can handle. I could meet a friend occasionally for a breakfast or lunch. What would I talk about? I don’t want to whine and complain. I wake up every day with intentions of going to the library for book discussion, or even shopping for some spring clothes. I don’t. Maybe tomorrow. I do understand if that is any comfort to you at all. I wish you well

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@emteenest2 Walmart and dr appts. Sunday church, for 1 hr. My life.

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dederickve | @dederickve | 3 days ago
In reply to @dederickve "@emteenest2 Walmart and dr appts. Sunday church, for 1 hr. My life." + (show)
Profile picture for dederickve @dederickve

@emteenest2 Walmart and dr appts. Sunday church, for 1 hr. My life.

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@dederickve Walmart as quick in there as possible. No just looking around.

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dederickve | @dederickve | 3 days ago
In reply to @jeanadair123 "It’s so hard living though someone with dementia, I hate myself when I get angry and..." + (show)
Profile picture for jeanadair123 @jeanadair123

It’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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@jeanadair123 I sure do understand !

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dederickve | @dederickve | 3 days ago
In reply to @jeanadair123 "What a day we have had the worst ever…. My husband was not feeling well and..." + (show)
Profile picture for jeanadair123 @jeanadair123

What 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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@jeanadair123 Nothing your fault !

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dederickve | @dederickve | 3 days ago
In reply to @cjme "@tunared I have found from this group there are many of us who lose our loved..." + (show)
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@tunared I have found from this group there are many of us who lose our loved ones of many years, before they leave this earth. I think each of us feel alone, each situation has differences and similarities. I have been married 50+ years also and this is not how I pictured this phase of my life. I'm glad you have day care. It took me a while to to hire help 1-2 days a week. No one can give him the care I can, but if I don't get help I won't be able to do it either. We're hanging in there with ya!

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@cjme No longer is he the man I married. It’s almost like I am living here alone. Hate these feelings.

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jenniferkr | @jenniferkr | 1 day ago
In reply to @dederickve "@cjme No longer is he the man I married. It’s almost like I am living here..." + (show)
Profile picture for dederickve @dederickve

@cjme No longer is he the man I married. It’s almost like I am living here alone. Hate these feelings.

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@dederickve or living with a child. Definitely not the man I married

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mkcc | @mkcc | 5 hours ago

My husband is showing signs of MCI complicated by his poor hearing. In some situations, I don't know if he didn't hear me, doesn't understand, or doesn't remember. Sometimes I think it's all of these issues.
Many years ago I participated in a monthly face-to-face support group for dementia caregivers (my mother has Alzheimers). It was so valuable to learn my mother's actions, etc., and my reactions were not unusual and get suggestions on how to cope.
Reflecting last night on how I wasn't dealing with N's situation, I acknowledged I needed a support group but given where we live (very rural, far from a metro area and family) it might need to be online. And I found this! Scanning through the posts, I feel better just knowing my emotions and struggles are not just me....it's part of the disease. Thank you.

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royce | @royce | 4 hours ago

Welcome to the forum. You probably already have read from others who are going through the same thing or already have experienced it. It's good to have access to all of that knowledge and experience. You can also share what you have learned with the rest of us.

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