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The Caregivers' Guilt Dumpster - Open for business

Posted by @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!

REPLY

What a great idea, Scott. You’re so right. Guilt doesn’t have to be rational to be real. And it is very real for many caregivers. Sometimes I just feel like marching around with a placard and shout “Down with Guilt” or “Guilt be Gone! We’re Doing the Best we Can.” But alas, feelings of guilt seem to go hand in hand with caregiving.

I like the idea of dumping our guilt here, to share it with others who get it and can help us lessen the burden we place on ourselves. I’m tagging other members of the Caregivers group to bring them into the conversation. @sma1952 @lindabf @lisa_sj99 @besrus5 @soul @sylviapf @tavi @sandydominy1 @bbams @burrkay @rozalia @kwilbur @chesneydell1965 @martyc2016 @dawn_giacabazi @rjm62 @shortshot80 @azjulie @macbeth please read Scott’s message above.

What guilt burden would you like to leave in the “dumpster”?

Feeling guilty comes from the judgement of the caregivers and the final outcome of the patients. Everyone of caregivers give and provide the best to the patients. Contribution and support physically , emotionally, mentally …. The best of it. We don’t know since individual case is so different among the patients. In order to make the good judgement, caregivers should monitor patients’ condition daily and discuss closely with the doctor in order to move on with the medical procedures. We are the caregivers, we sometimes have to work as coordinators or messenger base on the truth, sincere, kindness and patience. We should ignore and disregard the Unnecessary guilt. Open communication is the best practice of the transparency. The communication should always clear and precise between the doctor and the patients. All the caregivers have to be aware of every step of what to do next, why, when and how. I would welcome you all advice. Best regards, Soul

Guilt dump! I’ve been frustrated lately since my husband was so down and out and not helping himself. I will do anything for him but for the first time in a while seeing him able, or what seemed like able, to help and he wasn’t. And by help I mean chores such as: hose down patio, empty dishwasher, etc…easy things. So guilt 1: not just letting it go and let him sulk on the couch all day because he certainly deserves to. And also guilt because it was more my stubborness about the principal, not the actual chores. And my worry about his emotional stability also important.

Guilt 2: even though he seemed somewhat ok he wasn’t. All the tumors had grown so big that if this chemo treatment doesn’t work (started today and I’m sitting in the room now)then… I can’t even finish this sentence because it’s too freaking hard to fathom. SO guilt 2: he’s been worse than ever and I’m annoyed that he’s not helping around the house!!!! AHHH!!!! What was I thinking?!?!

Guilt 3: 9 months and 6 days ago we were planning a huge wedding on a boat, with an awesome band, 200+ people, I had purchased my beautiful gown,etc. We cancelled when he was diagnosed with cancer and we got married in our living room with a few friends in March and it was perfect. other than not being able to wear my gorgeous ball gown haha, I’ve never regretted our decision to cancel it nor have I been sad about cancelling it. Well… That big wedding was supposed to be tomorrow. And I feel INCREDIBLY guilty because for some reason I’m thinking about that… and I’m a little disappointed…. And we are in an extremely scary situation now and I’m facing losing him yet I’m thinking about a cancelled party!? What!!?? Guilt. Ugh.

Venting about guilt complete 🙂 Good idea @IndianaScott !!!

@bbams

You’re a human being. Of course, with such big plans, this outcome is bound to be disappointing, even with bigger, worse things going on. I think most of us would see ourselves in the context of what was planned vs. what has actually come to pass, and feel some disappointment. As far as helping with house work, I think most of can relate to your frustration. My husband has been a better partner than I ever thought I would find. He has made a real difference in my life. Yet, sometimes the pressure of caring for an adult in failing health, plus keeping up the house, all of the business, all of the errands, laundry, appointments…you name it, seems overwhelming, and we may lose our composure momentarily. Allow yourself your moment, then, do your best to get back on that horse!

My husband and I were care givers for my mom and dad for close to 40 years. The last 10 years was very difficult for me seeing my mom failing and tearing dad apart verbally. My sister and brother would visit occasionally (2-3 x a year) but never really accepted that my mom was having problems. We moved them closer to my sister and brother three years ago so that they would get to see family more often which also included grandchildren and great-grandchildren. They lived in independent living for 2 years before having to move mom into memory care. Dad remains in independent living. I am now 2 1/2 hours away and visit e/o week.
I spend pretty much the whole day there. Two hours with mom and 4-5 hours with dad. Since mom has been in memory care (I’m the lady that visits once in awhile — she doesn’t know me as her daughter) I have enjoyed being the “daughter” again and just visiting without all of the other responsibilities. My sister is now trying to guilt me into coming more. She visits a couple times a week, for short periods, and my brother visits daily (he works next door to the facility). They both feel very guilty that nothing was done to help mom prior to their move. I tried for 2-3 years asking them to help. How do I explain to them that they do not need to feel guilty. Mom is being well taken care of. Dad is doing fine. They need to love them as their parents. God has blessed us with extra years to share with them. They are not a burden. I don’t want them to burn out by thinking they have to make up for lost time. What do I do?

It is very difficult for me to write about anything specific right now but I do want each and everyone of you to know how much I appreciate your efforts to put your experiences into words…. you are helping me. Thank you.

@bbams

Guilt dump! I’ve been frustrated lately since my husband was so down and out and not helping himself. I will do anything for him but for the first time in a while seeing him able, or what seemed like able, to help and he wasn’t. And by help I mean chores such as: hose down patio, empty dishwasher, etc…easy things. So guilt 1: not just letting it go and let him sulk on the couch all day because he certainly deserves to. And also guilt because it was more my stubborness about the principal, not the actual chores. And my worry about his emotional stability also important.

Guilt 2: even though he seemed somewhat ok he wasn’t. All the tumors had grown so big that if this chemo treatment doesn’t work (started today and I’m sitting in the room now)then… I can’t even finish this sentence because it’s too freaking hard to fathom. SO guilt 2: he’s been worse than ever and I’m annoyed that he’s not helping around the house!!!! AHHH!!!! What was I thinking?!?!

Guilt 3: 9 months and 6 days ago we were planning a huge wedding on a boat, with an awesome band, 200+ people, I had purchased my beautiful gown,etc. We cancelled when he was diagnosed with cancer and we got married in our living room with a few friends in March and it was perfect. other than not being able to wear my gorgeous ball gown haha, I’ve never regretted our decision to cancel it nor have I been sad about cancelling it. Well… That big wedding was supposed to be tomorrow. And I feel INCREDIBLY guilty because for some reason I’m thinking about that… and I’m a little disappointed…. And we are in an extremely scary situation now and I’m facing losing him yet I’m thinking about a cancelled party!? What!!?? Guilt. Ugh.

Venting about guilt complete 🙂 Good idea @IndianaScott !!!

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@bbams I marvel at your strength and power as you and your husband continue your challenging journey.

There is so much which is uncontrollable in caregiving. Demands by our patients, demands of our lives, the up and downs of life, so your guilt is so very, very understandable as are your feelings of loss.

Other than our patients, I believe no one experiences loss more than caregivers. Even a patient’s doctors and nurses come and go, are in and out, but we caregivers witness the loss each and every day. There is no avoiding it.

Managing loss and grief in caregiving is a challenge all its own and I applaud your strength and courage!

Glad you used the dump 🙂

Peace,

@kateia

My husband and I were care givers for my mom and dad for close to 40 years. The last 10 years was very difficult for me seeing my mom failing and tearing dad apart verbally. My sister and brother would visit occasionally (2-3 x a year) but never really accepted that my mom was having problems. We moved them closer to my sister and brother three years ago so that they would get to see family more often which also included grandchildren and great-grandchildren. They lived in independent living for 2 years before having to move mom into memory care. Dad remains in independent living. I am now 2 1/2 hours away and visit e/o week.
I spend pretty much the whole day there. Two hours with mom and 4-5 hours with dad. Since mom has been in memory care (I’m the lady that visits once in awhile — she doesn’t know me as her daughter) I have enjoyed being the “daughter” again and just visiting without all of the other responsibilities. My sister is now trying to guilt me into coming more. She visits a couple times a week, for short periods, and my brother visits daily (he works next door to the facility). They both feel very guilty that nothing was done to help mom prior to their move. I tried for 2-3 years asking them to help. How do I explain to them that they do not need to feel guilty. Mom is being well taken care of. Dad is doing fine. They need to love them as their parents. God has blessed us with extra years to share with them. They are not a burden. I don’t want them to burn out by thinking they have to make up for lost time. What do I do?

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Hello @kateia. You bring up a very valid and important caregiving point. How others act and react in response to guilt they may be feeling, but more often than not, haven’t verbalized before.

I encountered this in my caregiving and actually with one family member it is worse now that my wife has passed on. I wish I had an easy answer.

All I can say is I developed a ‘stock answer’ I used saying something along the lines of ‘for MK’s benefit, we have to focus on the future and our time together from today on. Yesterday has become unimportant.” This helped moved them off their guilt (sometimes only after they heard it about the 100th time) and it helped me, too, in remembering I had to focus on today and tomorrow and not the losses of yesterday.

Strength and peace,

@tavi

It is very difficult for me to write about anything specific right now but I do want each and everyone of you to know how much I appreciate your efforts to put your experiences into words…. you are helping me. Thank you.

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Peace, strength, and courage to you @tavi

@kateia

My husband and I were care givers for my mom and dad for close to 40 years. The last 10 years was very difficult for me seeing my mom failing and tearing dad apart verbally. My sister and brother would visit occasionally (2-3 x a year) but never really accepted that my mom was having problems. We moved them closer to my sister and brother three years ago so that they would get to see family more often which also included grandchildren and great-grandchildren. They lived in independent living for 2 years before having to move mom into memory care. Dad remains in independent living. I am now 2 1/2 hours away and visit e/o week.
I spend pretty much the whole day there. Two hours with mom and 4-5 hours with dad. Since mom has been in memory care (I’m the lady that visits once in awhile — she doesn’t know me as her daughter) I have enjoyed being the “daughter” again and just visiting without all of the other responsibilities. My sister is now trying to guilt me into coming more. She visits a couple times a week, for short periods, and my brother visits daily (he works next door to the facility). They both feel very guilty that nothing was done to help mom prior to their move. I tried for 2-3 years asking them to help. How do I explain to them that they do not need to feel guilty. Mom is being well taken care of. Dad is doing fine. They need to love them as their parents. God has blessed us with extra years to share with them. They are not a burden. I don’t want them to burn out by thinking they have to make up for lost time. What do I do?

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I agree that focusing on the time that we have left with mom and dad is what is important now. I have been so blessed to have had both my parents live to an older age. Mom is 85 and dad is 90. So many of my friends wish that they could still visit with their parents who are now gone. I will cherish each and every minute that I have with them. I will also encourage my sister and brother to do likewise. Thank you for your comment.

@tavi

It is very difficult for me to write about anything specific right now but I do want each and everyone of you to know how much I appreciate your efforts to put your experiences into words…. you are helping me. Thank you.

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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.

@tavi

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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Hi @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!

@tavi

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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Providing 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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