Coping with caregiver guilt– before it crushes you
erasing guilt

As usual, I was multi-tasking.

I had one load of dirty clothes in the washing machine and one load of clean clothes running track in the dryer. The timer was set to notify me when the pot of potatoes I’d set to boil would be done enough to mash for Rodger’s lunch. I was trying to remember where I put the cordless phone. I didn’t want to have to scurry around looking for it when the nurse called to discuss the continuing fluctuations in his blood pressure.

And I was trying to figure out how to deal with the guilt.

I wanted be more like my friend, Dana. Dana does not multi-task, claiming that it takes less effort to do ten things consecutively than it does to try to do five things all at once and she insists that feeling guilty is a complete waste of her time The weight of guilt will crush you unless you take steps to let it go. | Coping with Caregiver Guilt-- Before It Crushes Youand energy.

“Get over it. Guilt is a useless emotion.”

She is probably right. I just don’t know how she does it.

I tried doing fewer tasks at once but I never got down to doing only one thing at a time. No matter where I was or what I was doing part of my mind and most of my heart was with him. I went to sleep puzzling over how to add flavor to his diet of pureed food and thickened liquids.  I woke up wondering what his blood pressure reading would be.  I often stopped in mid step, listening to the too still air, hoping for a small cough or sneeze to signal he was still breathing.

Caring for him reminded me of caring for my babies the first days of their lives when they seemed too fragile to be of this world and I feared that any misstep on my part would bring disaster.

He had a heart attack. He almost died. Again. And I felt so guilty about that.

Shouldn’t I have seen the signs before it got that far? Looking back, he did seem more tired than usual and his heart rate was slow enough for an alarm to be sent to his doctor through the tele-health monitor in our home.  Still, everyone agreed he seemed to be doing okay and the readings weren’t dangerously low.

“We know you’re taking good care of him,” his care coordinator said. “We’ll keep an on this for a day or two and see what happens.”

Now we know. A heart attack happened. I realize that his EKGs had been fine up to that day. I know he never complained of chest pain or shortness of breath until the moment the blood clot hit him. I know that I did the right thing when I called 911 right away.

“Time is critical in a situation like this, the paramedic explained. And you got us here fast. You did good.”

I didn’t feel good. I felt guilty. I wanted to know how to deal with that.

And I wasn’t the only one to feel it.  Not by a long shot.

My husband felt guilty because I spent most of my time caring for his father. On an especially hard day he apologized many times.

“My poor honey. I feel so guilty.”

I kept telling him there was no reason for him to feel any guilt. He went to work every day to earn the money that supported us. We planned for this long before it became necessary. We agreed on the division of labor. But still he felt it and it showed in his face even when he didn’t say it.

I understood.  My own father, older than Rodger, was also quite ill. He was being taken care of by his stepson in Florida while I cared for someone not of my blood.  I longed to go to him but I couldn’t and he didn’t to want to leave Florida. I cringed every time I heard him say, “I don’t know what I’d do without Brian.”  Is there someone you can call when the guilt starts getting to you? Everyone needs someone with whom to vent.  | Coping with Caregiver Guilt-- Before It Crushes You

A cousin of mine, so close we are more like sisters than cousins, was filled with guilt because her mother was being cared for by her daughter. Grandmother and Granddaughter lived in the same town and shared a special bond.  My cousin lived across the country, visited often and called almost daily.

“She’s doing what I should be doing. I feel such guilt,” my cousin said.

“There is nothing wrong with your daughter being there for your mother. It’s what they both want, and she is on good hands. It’s okay,” I insisted. But in my heart I felt guilty for not having a better answer for her.

Rodger, my father, and my Aunt were all getting good care. The problem was not with them, it was with us. The caregivers. The ones who try to do it all and can’t.

The timer on the stove went off almost simultaneously with the buzzer on the dryer. The phone was ringing and Rodger was making his way down the stairs. I could deal with all that. That part was easy. But I needed to know how to deal with the guilt.

How could I get over that?

When things finally settled down I picked up the phone and called Dana.

Is there someone you can call when the guilt starts getting to you? Everyone needs someone with whom to vent. If you don’t know where to turn, get in touch with me. I’m a great listener.

Written by Bobbi Carducci
Bobbi Carducci was an in-home caregiver for her mentally and physically ill father-in-law, Rodger, for seven years. Her blog, The Imperfect Caregiver, is written for women and men caring for loved ones in their home. She hopes the honest depiction of her experiences will be of comfort to caregivers now coping with the challenges she faced and that it will bring them a sense of peace knowing they are not alone when experiencing the doubt, frustration, and guilt that come with doing the most difficult job you will ever love. Bobbi is a writer by profession, her book Confessions of an Imperfect Caregiver is due to be released by Open Books Press on July 26, 2014. Bobbi was the luncheon keynote speaker at the 26th Annual Pennwriters Conference in May 2013 where she also taught an intensive workshop on writing creative nonfiction.

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9 Comments

  1. After leaving the military in 1975, my husband and I wanted to be close to our parents, so we could be there in their later years, our parents lived a mile a part, so we brought our home between them. Over the years we made a good life, successful in business and raising our girls. We had it all, happy family life close knit family. Then in 1998 my husband fell 40 feet, working on our farm, 5 months in a trauma center in Atlanta Georgia. He lived and he has been amazing, being in a wheelchair don’t slow him down. But it took time to get him to that point, meaning I had to retire at 47 years old. We were worth 2.5 million dollars, coming out of the trauma center we owed 3.5 million. If I had continued working he would have never lived , I choose life over money, and never looked back!! We lost everything but each other and our girls, but when you have life you have hope, everything else is just stuff. To make a long story short, now my Mother, my Mother in Law, my brother and sister are all losing battles with their health, and for a year now my husband has been completely bedridden. 6 years ago my Father died, and during that time I tried to convince my Mother and Brother to let me come home, so I could be there for Moma, but they said no..over the years watching Moma I saw her going down, I tried to get my brother to get to a lawyer and set himself up on her banking and living will to take over, when the time came, he said Moms was fine, she just was falling to get attention, after the first two strokes, he realized after talking to the lawyer, that if he had done want I said, that everything would have been in place, so then he had to go to court to prove Moma could no longer take care of business, also realized he really needed me there, but my Moma says no still.. I have had guilt for years about not being where I could help, but finally I realized I have offered over and over, but I cannot be in two places at once… I love my family, and they love me, they though I had to much on me, and the professionals told them I couldn’t do it, but all of us together could get a lot more done then then one sick person working with another sick person… Now they see..but won’t go against Moma’s wishes…. I hate not being there, but I no longer carry any guilt …I’m soon to be 65 years old, and in great health, I take no meds. at all….We are blessed!!!

    Reply
  2. I’m caring for my 88 year old mother who has dementia. I have a hard time being her caregiver. she wants to doctor herself and makes up illnesses. she is in assisted living. when I go to see her she talks about all these things that are wrong with her but in reality she has some mild to moderate short term memory loss. other than that she is ok. but I can’t talk to her like a daughter to a mother anymore. she is a pro at “The old poor me”. and I feel guilty. she is an unhappy person and I’m just realizing that she has always been unhappy. I cant fix it but I want to. i think that’s my problem. I want to fix her. does this make any sense? my family doesn’t understand how hard it is on me to see my mother like this

    Reply
  3. Guilt…I know it well. I have been caring for my mother who suffered a stroke 15 years ago. At first I was so happy to be my mother’s caregiver, because finally I was going to be able to repay her for all she had done for me. Guilt set in so many times over the past 15 years, but then I realized, I am doing all I can for her and she has a better quality of life because of it. The guilt I feel now is all those times I told my husband I couldn’t go on that vacation or outing because I had to care for my mother. Well, that has changed now too. I decided this year I was going to make my husband more of a priority and do things like take that long anticipated vacation, go to the movies and enjoy my life with him more. Changing my attitude and getting some much needed help with my mother has made things so much better now.

    Reply
  4. Such a great post. I so understand TLC. I am only child, 50 yrs. my health failing. Trying to be there for two parents in 80’s that refuse independent living due to finances. Running over 160 mikes a day between work and their home. My mom is very difficult and my home is smaller would be very hard for them here plus she us very stubborn and very temperamental. I get very worked up around her despite my love for her. I have wo work. Without my job, we would lose everything we own. My life with husband is at a breaking point. I am so run down, immensely depresssed and full of guilt.

    Reply
  5. I know exactly what you’re talking about! It’s so hard to not feel guilt when we are taking care of someone–guilt because we feel guilt, too. It’s humbling to acknowledge that we’re not super-people and we must rely on others to help us out. But we’re so much happier when we do!

    Reply
  6. I have been surfing nline more than 4 hours today, yet I never
    found any interesting article like yours. It’s pretty worth enough for me.
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    Reply
  7. Spot on with this write-up, I truly believe that this amazing site needs a lot more attention.
    I’llprobably be back again too see more, thanks for
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    Reply
  8. My parents live in a different town. Actually it takes me about 2 1/2 hours to drive to their home. My dad is mostly bedridden. My mom takes care of him. The Hospice nurse aide comes in for 1 hour Mon-Fri. to help out. A RN nurse comes once per week also. It is very hard trying to be two places at once. My dad really hates for me to leave but yet I have a family at home. Does anyone know how to get rid of this kind of guilt? The kind that you know isn’t your fault but yet it is still there. My dad isn’t able or even willing to come and live with me. And, I can’t just leave my husband and family and move in with them. What do others do in this situation?

    Reply
  9. Hi Bobbi. It sounds like you have had your hands full. As a wellspouse caregiver of my wife, who has been effectively bedridden by MS, and a parent with her of two children, now 14 and 11, and a self-employed owner of a small business, I can relate to the business you describe. Someone from a wellspouse support group of which I am a member brought your article to our attention, which led to some group discussion. If I may, I would like to share my perspective on dealing with guilt. This is what I would say:

    Listen, I would say, you will have too much to do, with too little time and too little money. Do the best you can; give it everything. Love your spouse, your kids if you have them, keep the house clean if you can, go to work if that’s what you need to do financially. But this is bigger than you, so after you’ve done your all and it’s still not enough, don’t beat yourself up because you can’t do the work of 2 or 3 or 4 people. Don’t take on that guilt. It’s false guilt, and carrying it around will only hurt you. And where your going, you can’t afford to hurt yourself needlessly.

    Thank you for sharing your thoughts on the subject of guilt in caregiving. I hope for you and for all of us we can let go of any false guilt we may be carrying around with us.

    Reply

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