The Caregivers' Guilt Dumpster - Open for business

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 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,

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,

Peace, strength, and courage to you @tavi

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.